The other day I felt really angry, for me at least because I’m not a person who angers easily. However when I was younger, there were periods in my life when I felt really angry. My Auntie taught me that the things I was getting angry about may not be as simple as they seemed and to find out what the truth was. As I got older I questioned more and endeavoured to understand. I shied away from anger believing that it had no place in my life, that it would only bring negativity and pain. And although I still believe that anger is best kept in small quantities, anger can push us forward, it can prevent us from accepting the inequality within society and instead motivate us to fight for change.
The last five years have been especially hard on the disabled community and there have been many times when it would have been easy to be consumed by anger. Even before the last general election, the tabloids had increased the disproportionate amount of articles that falsely claimed or gave the perception that benefit fraud was sky high. And not only has this continued but it has steadily worsened.
Over the last five years society has been bombarded with an underlying ideology that disabled people that claim welfare are a problem and are not part of society.
This negative ideology is only further perpetuated by the Government. With a speech on the fairness of seeing the “closed blinds of their next door neighbour sleeping off a life on benefits” and the near constant references to those who “work hard and get on” and “hard working families” to name but a few.
But this simplistic and discriminatory view implies disabled people who are not in work are simply choosing not to do so because of the perception, that a life on benefits is an “easier” life. This shows an absolute lack of understanding about those who can’t work and of how restrictive disability can be.
But with this being portrayed as an injustice to the rest of society it is easier for politicians to form a regressive welfare policy if people believe that those in the disabled community are fraudsters. Because the perception then is of a government that is simply righting a “wrong” and not the truth, that this causes society to stagnate and discrimination towards the disabled community to worsen.
You would think with a government and the media that is so eager to criticise the disabled for not working it would be shredding away the barriers to work to enable those that could, with the right support, variety and flexibility in the work available but alas no. This Government that is so eager to criticise has not only failed to remove any barriers to work and social inclusion as a whole but it has closed or reduced existing schemes like the Independent Living Fund and Access to Work.
The prime minister only days ago stated “a life on benefits, is no life at all.”
This goes back to the same perception that a disabled person without a job, has no purpose, no life. It also implies that a disabled person’s value simply rests on their ability to work or not and belittles the huge contribution that disabled people have made in society. In the same way as the rest of society, the disabled community pursue interests and contribute to society as others do outside of their employment.
When highlighting the Government and the media’s position with the public and with people I know, it is obvious to see how much this distorted perception of the disabled community has influenced many peoples’ opinions.
In its more milder form it is not unusual to be told that the “Government are obviously not talking about you, you're obviously genuine”
I know I am but given that the vast majority of people claiming disability benefit are genuine, chances are however much this person may perceive me as genuine, another member of the public who doesn't know me may not and may discriminate against me. This feeds into the public's belief that benefit fraud is 34 times higher than reality.
For anyone that has read my blog you will know I have psoriatic arthritis and hypermobility alongside additional conditions and that I deal with pain every day. Although I walk with a stick and have had to use a wheelchair at times, I may look “normal” to an outsider that doesn't take more than a second to glance at me or get to know me.
I have had my disability questioned and have faced discrimination by passers by and those who even know me. I know that isn’t helped by the fact that stereotypically, arthritis is seen as a mild condition and one that only affects people in their old age. But the real crux of it is, that not only is the reality of my condition further from the public’s often misguided perception, I often receive discrimination and less understanding than someone who has the flu.
This is what I find truly ludicrous. I would love to say that this is uncommon but I and so many who live with invisible conditions have our validity questioned just because we don't have a snotty nose. It is even more ludicrous when you factor in that my arthritis can create a immune response that is equal to a severe bacterial infection or even burns.
Not only do disabled people have their validity questioned by society and even by people they know, they often are excluded from social gatherings and if invited the lack of an accessible venue or seating may mean they are unable to join in when they otherwise could of.
I have learned since the onset and the gradual worsening of my disability that friends that knew me well accept that my disability is just another aspect of me and that if they enjoy my friendship, they will make time for me as they did before. There are friends that care after every hospital stay and friends that will wait with me whilst I sit and rest, and there is the friend that has done all she can so I could be at her wedding.
Because of those friends and when I meet members of the public that give me their seat before I stumble, for those that don’t glare at me and instead open a heavy door, and for those that ask me questions with a thirst for understanding, you are the reason I do not submit to that anger.
The discrimination has been completely engineered to pull the public's attention away from the real causes of the inequality in other sections of society to easily blame those in the disabled community.
Society has gone backwards and peoples' perceptions have worsened. But this is not an problem created by the disabled community, it is one of a complete lack of acceptance. It is so hard for the disabled community not to be blinded by rage from the injustice experienced. The realisation that this shouldn’t be up to the disabled community to fix. There are those in society that will judge the disabled and do not want to change their ignorance and to those people I do not need to justify myself or spend time on you. To those that ask questions and want to reach out to understand, I am here.
(I know im late this year but better late than never)
Showing posts with label Arthritis. Show all posts
Showing posts with label Arthritis. Show all posts
Sunday, 3 May 2015
Tuesday, 10 March 2015
The NHS: should we all have care?
So I was looking at 4OD, looking through the factual section when I found NHS: £2 Billion a Week and me being me, who has watched so many documentaries I was intrigued to find out what it was and when I did my heart sunk.
The first episode of NHS: £2 Billion a Week follows three patients; a women in need of a breast reduction, a man in need of a liver transplant and a couple in need of the support of a Dementia nurse. After each of their stories were shown, it was detailed how much their care would cost and what the same amount of money could provide in other areas. Selected tweets were also shown live commenting on why each person should receive their care or not.
First was a women in need of a breast reduction. Generally, it is often felt that any breast augmentation is purely cosmetic and stories shown in the media like that of Josie Cunninghams only serve to reinforce this further. Many breast augmentations undertaken in the UK are for cosmetic reasons. However there are people, like Kim, who have particularly large breasts and this extra weight attached to the front of them day in day out will eventually take it’s toll on a person’s back.
She also referred to how she had and was working when explaining how she needed help. I have seen this more & more, consciously or not, many are using language to almost promote their “worth” before they are “allowed” to receive help both in the welfare and NHS system.
Then you have people like Josie Cunningham who had breast implants on the NHS and yes, she plays the villain well for the media. But the simple fact is she had no breast tissue, she was at the extreme other side in breast augmentation and for many girls they find this truly difficult to deal with psychologically. Do we therefore not allow anyone any argumentation because of the socially unpalatable person that came before them?
The cost of surgery was used to compare what the same amount could provide for elsewhere. It resulted in an inevitable tweet “Shall I miss dialysis for 6 weeks and die so you can reduce your boobs.”
Cost of Breast Reduction £4,000
the examples given for the money spent elsewhere
1,000 inhalers for children with asthma
6 Weeks of Dialysis
100 GP visits
Next patient Mark, who has alcohol related liver disease and needs a liver transplant. Any transplant given is obviously a gift that anyone should be thankful to the donor family for giving and thinking of others at such a sad time.
However, there was the inevitable tweet stating “why give an alcoholic new liver so he can drink more give it to someone more deserving.” This person isn’t alone in their opinion, many feel this way. But because this is due to alcohol he or anyone else is not allowed a second chance to change and turn his life around?
Another tweet however, reminded people that alcohol is an addiction and an illness, albeit one that society finds unpalatable. One that too often we judge to be the individual’s doing, a choice. It is a choice but not to become an addict but one to escape from life and what the person’s feeling. Access to drink and drugs are available within minutes but access to mental health care can be months if well over a year away. With the systematic lack of mental health care provision and mental illness being too often viewed by society as something people can help if only they tried, there should be no surprise that when given the choice of lessening your pain (and emotional pain is legitimate) that people often chose to forget with drink or drugs.
Cost of a Liver Transplant £73,000
the examples given for the money spent elsewhere
A nurses salary for 2 years
9 Hip replacements
40 hospital beds for a week
The third, Barrie, has Dementia and his wife and carer Ros wanted access to a specialist Dementia nurse who would support the couple. The couple are dealing with an awful disease which is only going to increase in frequency in the UK as the elderly population rises. Many will be supported by their carers who often aren’t supported and often are overlooked. The government knows these carers won’t abandon the person they care for and too often carers take the strain at a cost to themselves.
Cost of a Dementia Nurse £375 a year
the examples given for the money spent elsewhere
2 Meningitis B jabs
2 ambulance call outs
19 blood tests
For me this programme brought up notions of the workhouse and the “deserving” and “undeserving” poor. The simple reality is the NHS is affordable but at present is being woefully underfunded and portrayed as unsustainable. The program detailed the costs of each procedure requested and what the same money could buy if used elsewhere. Instead of creating an environment where people feel they need to prove themselves “worthy” of help, the equivalent costs could have been shown for how much the same procedures would have been under a private health care model. The government want to portray the NHS as unsustainable, for us to reduce the NHS to the bare bones so those that can pay are forced to top it up with private health care and those that can’t go without.
Kim’s breast reduction would have been £4,000 on the NHS, the same privately would cost nearly double. Even if people paid more in tax, the NHS is still cheaper and more efficient. Its not perfect but satisfaction is often no better in countries that have a private health care model.
For me, the programme highlighted how decisions are often based on the short term in order to “save” money. Kim was refused a breast reduction and it was costly to decide this. However not once was she seen by a (NHS) plastic surgeon to assess the reality that if she lost weight (which she already had) would it reduce her cup size. Long term, the medication she is taking will be more costly than providing the operation. Providing a Dementia nurse also long term is more cost effective, supporting people in their own home, away from hospital which is so much more costly.
The programme also highlighted how society’s disregard in helping those with addiction is so much more costly and simply because it is seen as “immoral.”
The cost of not treating addiction is added to policing and seen in the increases to home insurance with both costs recurring. By not treating addicts, the odds are stacked against them being able to achieve recovery without the support. It is something that crosses all social barriers and could happen to anyone.
This programme opened up the debate on Twitter of who was deserving and who wasn’t. Many believed that addicts weren’t. But if were to get rid of the limited and woefully inadequate amount of support available for addicts, what is to stop the same happening to the next illness society finds unacceptable?
What would be the criteria? Do we exclude those who don’t work in favour of those that do? Or ration treatment for the elderly? Or no treatment for those that smoke? It would be a nasty downward spiral.
I am worth it. I personally won’t apologise nor justify myself because I have a disease that was not of my own doing, that I won the shit health lottery or that it happened to me when I was young. I will however say my gratitude for the NHS can not be summed up in a few mere words, the NHS is worth fighting for and is cheaper than private health care. You may be healthy now but probability states that you will need the NHS in your lifetime, it only takes a second for things to change.
We have already seen councils placing elderly and disabled up on bidding sites for social care providers, reduced to a list of conditions like you would sell an old Jacket you no longer wanted. How would you feel if that was your relative? Nobody should feel unworthy of care and feel like they have a price on their head.
Everyone should receive treatment but we are a generation that were born in the NHS and so often don’t understand the realities of not having it to rely on. People need to use each service responsibly. We can not let this be reduced to an argument about which condition is more “deserving” than the rest. The NHS was created at a time we could least afford it because it was the right thing to do, it is one of the best things this country has done and it will remain as long as there are people left to fight for it.
The first episode of NHS: £2 Billion a Week follows three patients; a women in need of a breast reduction, a man in need of a liver transplant and a couple in need of the support of a Dementia nurse. After each of their stories were shown, it was detailed how much their care would cost and what the same amount of money could provide in other areas. Selected tweets were also shown live commenting on why each person should receive their care or not.
First was a women in need of a breast reduction. Generally, it is often felt that any breast augmentation is purely cosmetic and stories shown in the media like that of Josie Cunninghams only serve to reinforce this further. Many breast augmentations undertaken in the UK are for cosmetic reasons. However there are people, like Kim, who have particularly large breasts and this extra weight attached to the front of them day in day out will eventually take it’s toll on a person’s back.
She also referred to how she had and was working when explaining how she needed help. I have seen this more & more, consciously or not, many are using language to almost promote their “worth” before they are “allowed” to receive help both in the welfare and NHS system.
Then you have people like Josie Cunningham who had breast implants on the NHS and yes, she plays the villain well for the media. But the simple fact is she had no breast tissue, she was at the extreme other side in breast augmentation and for many girls they find this truly difficult to deal with psychologically. Do we therefore not allow anyone any argumentation because of the socially unpalatable person that came before them?
The cost of surgery was used to compare what the same amount could provide for elsewhere. It resulted in an inevitable tweet “Shall I miss dialysis for 6 weeks and die so you can reduce your boobs.”
Cost of Breast Reduction £4,000
the examples given for the money spent elsewhere
1,000 inhalers for children with asthma
6 Weeks of Dialysis
100 GP visits
Next patient Mark, who has alcohol related liver disease and needs a liver transplant. Any transplant given is obviously a gift that anyone should be thankful to the donor family for giving and thinking of others at such a sad time.
However, there was the inevitable tweet stating “why give an alcoholic new liver so he can drink more give it to someone more deserving.” This person isn’t alone in their opinion, many feel this way. But because this is due to alcohol he or anyone else is not allowed a second chance to change and turn his life around?
Another tweet however, reminded people that alcohol is an addiction and an illness, albeit one that society finds unpalatable. One that too often we judge to be the individual’s doing, a choice. It is a choice but not to become an addict but one to escape from life and what the person’s feeling. Access to drink and drugs are available within minutes but access to mental health care can be months if well over a year away. With the systematic lack of mental health care provision and mental illness being too often viewed by society as something people can help if only they tried, there should be no surprise that when given the choice of lessening your pain (and emotional pain is legitimate) that people often chose to forget with drink or drugs.
Cost of a Liver Transplant £73,000
the examples given for the money spent elsewhere
A nurses salary for 2 years
9 Hip replacements
40 hospital beds for a week
The third, Barrie, has Dementia and his wife and carer Ros wanted access to a specialist Dementia nurse who would support the couple. The couple are dealing with an awful disease which is only going to increase in frequency in the UK as the elderly population rises. Many will be supported by their carers who often aren’t supported and often are overlooked. The government knows these carers won’t abandon the person they care for and too often carers take the strain at a cost to themselves.
Cost of a Dementia Nurse £375 a year
the examples given for the money spent elsewhere
2 Meningitis B jabs
2 ambulance call outs
19 blood tests
For me this programme brought up notions of the workhouse and the “deserving” and “undeserving” poor. The simple reality is the NHS is affordable but at present is being woefully underfunded and portrayed as unsustainable. The program detailed the costs of each procedure requested and what the same money could buy if used elsewhere. Instead of creating an environment where people feel they need to prove themselves “worthy” of help, the equivalent costs could have been shown for how much the same procedures would have been under a private health care model. The government want to portray the NHS as unsustainable, for us to reduce the NHS to the bare bones so those that can pay are forced to top it up with private health care and those that can’t go without.
Kim’s breast reduction would have been £4,000 on the NHS, the same privately would cost nearly double. Even if people paid more in tax, the NHS is still cheaper and more efficient. Its not perfect but satisfaction is often no better in countries that have a private health care model.
For me, the programme highlighted how decisions are often based on the short term in order to “save” money. Kim was refused a breast reduction and it was costly to decide this. However not once was she seen by a (NHS) plastic surgeon to assess the reality that if she lost weight (which she already had) would it reduce her cup size. Long term, the medication she is taking will be more costly than providing the operation. Providing a Dementia nurse also long term is more cost effective, supporting people in their own home, away from hospital which is so much more costly.
The programme also highlighted how society’s disregard in helping those with addiction is so much more costly and simply because it is seen as “immoral.”
The cost of not treating addiction is added to policing and seen in the increases to home insurance with both costs recurring. By not treating addicts, the odds are stacked against them being able to achieve recovery without the support. It is something that crosses all social barriers and could happen to anyone.
This programme opened up the debate on Twitter of who was deserving and who wasn’t. Many believed that addicts weren’t. But if were to get rid of the limited and woefully inadequate amount of support available for addicts, what is to stop the same happening to the next illness society finds unacceptable?
What would be the criteria? Do we exclude those who don’t work in favour of those that do? Or ration treatment for the elderly? Or no treatment for those that smoke? It would be a nasty downward spiral.
I am worth it. I personally won’t apologise nor justify myself because I have a disease that was not of my own doing, that I won the shit health lottery or that it happened to me when I was young. I will however say my gratitude for the NHS can not be summed up in a few mere words, the NHS is worth fighting for and is cheaper than private health care. You may be healthy now but probability states that you will need the NHS in your lifetime, it only takes a second for things to change.
We have already seen councils placing elderly and disabled up on bidding sites for social care providers, reduced to a list of conditions like you would sell an old Jacket you no longer wanted. How would you feel if that was your relative? Nobody should feel unworthy of care and feel like they have a price on their head.
Everyone should receive treatment but we are a generation that were born in the NHS and so often don’t understand the realities of not having it to rely on. People need to use each service responsibly. We can not let this be reduced to an argument about which condition is more “deserving” than the rest. The NHS was created at a time we could least afford it because it was the right thing to do, it is one of the best things this country has done and it will remain as long as there are people left to fight for it.
Thursday, 1 January 2015
and a Happy New Year!!
Blwyddyn Newydd Dda
So Happy New Year to everybody! We rang in the New Year watching people standing in the no doubt freezing cold weather watching some pretty fireworks whilst Techiecarer & I sat at home with one very excitable bunny bounding around us, he seemed so very pleased to ring in the New Year.
There was some lovely times this last year & some sad especially with my Dad’s passing & although it is part & parcel of my life, it is truly ridiculous to see how many hospital visits I’ve had.
I’m not for resolutions. Promises that so often you don’t keep to yourself. However as always I have things I want to do but on the understanding that I may not complete some of the things I would like to do this year but that doesn’t mean I never will. I also know that I will no doubt do things that I hadn’t even planned for this coming year.
However the main thing I want to try & do this year, is not to care about peoples’ judgement as much. I always try to be a nice person & be someone who cares but when I know that I am doing all that I can & that I need the help & support that I receive I still however get judgement. For me, it makes you feel like you have to explain, to justify yourself, where there is in fact nothing you need to justify yourself for. I have always known that for some they will never accept how things are regardless of what you say. So I’m going to try to conserve my energy & not defend something I don’t need to defend. I also want to make sure that I don’t let people define my worth by my disability or my lack of a job, my disability is part of me but it is not the only part & that just because I don’t have these things does not make me worthless nor mean I have no purpose.
I also want to write more. Manageable amounts that aren’t necessarily huge essays & to not worry about what I’m writing as much as I do & to improve upon it. For me with my dyslexia I have always found speaking a breeze but writing is a lot harder especially coupled with brain fog & fatigue. There are also so many small things I’m thinking about focusing on & will mull it over in the coming days & I know that Techiecarer has his own challenges ahead for this year but I know how very I proud of him I am.
To everyone I wish you a very happy new year & for everyone to be kind to themselves this coming year. To be helpful to others, to stand up for whats right & for the disabled community to support each other, to not allow people to create a climate where disabled are made to feel inadequate.
No one should define you but you.
Sunday, 23 November 2014
Counting Spoons
So what has happen since my last “spoonie” bod update?
Well all I can say is having multiple overlapping conditions is just damn complicated & inconsiderate some times, well a lot of the time. Too often than not I have learn’t that you can calculate how many spoons you may need for a particular task & often half way through a plus changes to a minus & you have to deal with the “fabulous” consequences.
But on the whole there have been many hospital appointments, GP & nurse appointments & I underwent surgery.
I was waiting to have a nerve test done which i've had & my nerves at least are doing what they are suppose to. Great, but that obviously doesn't explain the pins & needles in my feet & legs. The guy however that was doing the test said I need to be sent for a head & spinal scan & also mentioned that Doctors have found that some people on Anti-TNF treatment have discovered that it has messed up their nerves.
Oh, well that's peachy then !
It’s not like I can really choose not to take medication for my arthritis so it does "slightly " complicate things some what however there are a few similar medications that I could switch to if need be.
I've been off my Anti-TNF treatment for awhile as I had to have an operation & as my medication suppresses my immune system, my rheumatology team took me off treatment so to try & give my body the best chance of healing afterwards . Although not great, it’s worse to be left on the medication (for me personally anyway) like my old team would (different treatment but it still suppressed my immune system) as often I wouldn't heal properly & I would be more prone to infections.
The operation hurt, I was awake though sedated. I'm not a wimp about these things been as I have pain all the time but I tried to tell the anaesthetist that when I had sedation previously at this hospital for a non surgical procedure, I was barely sedated at all & obviously as this was surgery I didn't want that to happen again.
Unfortunately he took this as me having a low pain threshold instead of having a higher level of pain to deal with but I didn’t try & argue & just agreed with him as it was easier. He told me not to worry that the sedation that he was going to give would be enough but it wasn't, he had to give me more sedation & pain relief because I was too awake.
I then had to lie in recovery for an hour whilst I came round & after you have eaten they move you to a chair recovery before you are seen by a doctor & then discharged.
So half way though being discharged I started to feel bad & that I was going to be sick so I told the doctor who asked if I "hold on for a minute" & they would get me a sick bowl. Ookk? So shes talking about my discharge whilst I try & concentrate on not throwing up on her or that's what I thought. About a minute maybe? Later she asks me if "I'm ok" I proceed to slightly shake my head, mumble "no" & then I blackout. I mean how it happens in films, think Harry Potter & the dementors without the dementors, soul sucking & the screaming. I came back around to people holding me up right on the chair on oxygen with a blood pressure cuff on & O² sats monitor. They proceeded to plonk me on a trolley & wheel me back into the recovery for another hour & a half.
Nooooo! I was trying to escape!
Turns out that my blood pressure had got really low 60/40 but by the time I left recovery (for the second time) it had got nearer normal at around 100/80. I asked the nurses if TechieCarer was ok throughout this & she said “Oh yes but you scared the doctor half to death”.
Whoops, well I did warn her!
Anyway other than an early infection which my GP was awesome quick to treat, I healed as I should & when I went to my doctor to talk to him about some other tests I had & my bowels, (I know! but everybody has them) he suggested that I had another blood test.
This was to check my ferritin levels which is an important little protein for those that don't know that stores & realises iron. I had had my red blood count done, the amount, size & shape were all as they should be & usually if they aren’t, it is a good sign of anemia. However when I had my ferritin checked my levels were really low indicating that although the other signs were fine I was infact anemic because I was deficient in the little protein that knows what to do with the iron.
This is also likely one of the main reasons I blacked out after my surgery & so I’ve now been put on quite a significant dose of iron tablets to try & get everything to how it should.
Also my usual physio is off sick (Boo! Hope she is better soon) so I have been seeing a new physio who is really nice. She had me trying wax therapy which is very odd & since I have been off my medication I’m in quite the flare & have been having alot of inflammation in my joints. My hips have been especially more painful which the physio has said is because I have bursitis in my hip (again) & inflammation in my pelvis. So unfortunately i'm not going to be able to avoid a steroid injection this time but hopefully it should get the flare inflammation back under some kind of control.
So yep that’s what's been occurring
Tuesday, 18 November 2014
Chronic illness, disability & a box that doesn’t “quite” fit
So I am referring to a blog post I have read titled “Please Stop Framing Disability as Just a Welfare Issue” & although I refer to the piece it is not an attack at the bloggers character but criticism of a piece that I felt was deeply one sided in parts.
I have linked to the blog post that I am referring to above & about half way down the post it refers to a section of the disabled community as the “Sick movement”.
I can’t see how refusing to accept a section of the disabled community as that, disabled, is suppose to support a move to have the disabled community included fully into society?
Just because someone may personally believe that these people do not “fit” into the definition they have of disability doesn't make it true.
It is also deeply disturbing & damaging to imply that if one person is perceived to have a severe disability & can do a proportion of work, that people with perceived “less severe” disabilities should have no excuses. When in reality most have additional difficulties that are not taken into account when casting judgement, which in itself can often be most damaging to the individual & will not support any idea of being confident living with their disability.
I have several overlapping medical conditions including psoriatic arthritis & hypermobility & although some conditions with the appropriate medical treatment can be well managed, medicine is still not perfect & often a person's condition is still disabling.
I have a condition which as a result causes disability & so therefore i am DISABLED. My arthritis causes me pain, fatigue which restricts my movement. I am restricted in my movement by the inflammation & pain & I can not carry anything heavy because my wrists will physically give way & this is just to start. Although I have medical treatment, I am one of those where medicine can not control the disabling aspects of my condition.
Disability by definition is a restriction & a limitation. It is not because we aren't trying hard enough, that we’re not “determined” or that we are giving in. With all the will in the world it won’t necessarily be enough if the body can’t keep up, even if the person had unlimited support & adaptations & this is not a failing on the person’s part.
It is bad enough that the government & the media consistently bash the disabled community on its legitimacy (which creates a more ablest environment) without members of the disabled community excluding people, often newly disabled, because they don’t believe that these people belong in their definition of disability.
However much the blogger in question may not like welfare being part of the immediate debate it is because if people are left without money & security when you are disabled (especially newly so) it will worry the life out of you, as it would for others disabled or not.
At the point when the brown envelope hits the mat the last thing a disabled person is thinking about is how to change disability policy for the better but instead are hoping that they will have a roof over their head, food & heat. The blogger makes it come across as if the first thing that enters a newly disabled person’s mind are pound signs but instead it is worry.
The work capability assessments work on the basis of the person is "guilty" or has something to hide & it grades on how “damaged” a person is. I would argue that the work capability assessments are the immediate basic problem for many. They are disabling in the way they are carried out & inspire no level of confidence from the individual that they will receive the support they need.
From what I have taken, from what the blogger has written, I agree that society is disabling but even if we had some beautiful utopia (oh how I wish) people will still be disabled especially those with chronic illnesses until medicine advances further. The WCA is broken & campaigners are drawing attention to the failings of the assessment to try & improve the situation. If the WCA was altered or removed this wouldn’t be the end to campaigning, it is only the start.
It is not seen as a "black or white" issue or that simply welfare is the only issue affecting disability. I find it incredibly patronising that people who campaign for improvement in the WCA apparently want the "protective feeling of a hospital environment".
The campaigners that campaign against the WCA want greater support given to disabled people so that they can realise their full potential. However many of the policies that were moving towards this have been cut, altered or greatly reduced including the ILF, PIP & access to work. Although imperfect, these were steps towards giving greater support to disabled people to realise their full potential & to be independent but due to the cuts the progress that has been made is largely being undone.
Disease does disable people & so does society. I would love society to lift the barriers around access to transport & buildings, for flexible working, job sharing or variable hours. But also for society to see that some people can't do paid work but could volunteer & that some can’t work but still have valuable contributions to make in other ways & to appreciate the value in it.
But this takes time & for society to care, which seems to be happening less & less with the increasing scrounger rhetoric portrayed by the media. Disability doesn’t fit into a tidy box or category it is as unique as the individual affected. The blogger only sees the final goal, not appreciating that we can not ignore the issues of the WCA if we want fair treatment for disabled people.
The process takes time.
Sunday, 12 October 2014
World Arthritis Day: Arthritis & the extras.
However, this year I thought I would focus on the often missed “extras” as many often see arthritis as just a disease that you have in your pension years that gives you “Creaky Bones”. When in a matter of fact that is only the headliner, the “star attraction” & there are many added extras that come with it & that these “extras” can vary from type of arthritis, down to the individual, with people experiencing the same disease quite differently.
For myself personally, I have Psoriatic Arthritis (along with other conditions) so I will be referencing my experiences & my specific type of arthritis.
As well as inflammation affecting the joints, there can be inflammation affecting the ligaments, cartilage, other tissues & even an individuals organs. I often have inflammation affecting the muscles & cartilage in between my ribs & have had many bouts of tendonitis (inflammation around the tendons). I’ve also have had bursitis which is inflammation of the synovial fluid in the joint, none of which did I know could happen when I was first diagnosed.
Also a major factor is fatigue & this occurs due to elevated levels of inflammation in the body.
The best way to describe it to someone who doesn’t have the disease is to think of the worse bug you have ever had & how exhausted you felt. You were exhausted because your immune system is going into overdrive fighting the bug (so obviously hence why you're tired) & when someone has psoriatic arthritis, their immune system is overacting but with no infection present.
People don’t know exactly why the immune system is overactive, the general consensus is that it’s likely caused by a genetic fault &/or triggered by an infection.
Because my immune system is overactive, I have to take a drug called Humira which is an anti-TNF to suppress my body's immune response, thus lessening the inflammation. For some people they find that it halts the active inflammation & for others a level of inflammation remains which seems to be what has happened in my case.
I take my Humira with the use of a subcutaneous injection (didn’t think i’d be doing that) & as a result of the medication it means that i am immune compromised, didn’t think that would happen either. Obviously, when you're immune suppressed you're more susceptible to infections & this unlocks a whole new level of possible sucky extras. There is some suggestion that people with arthritis may experience added dental problems & for me this has certainly been the case where I had some dental work completed & all seem successful.
However, it is believed that a small gap had remained & due to my immune compromised state, a cyst formed which later became infected. Due to the infection I had to come off my arthritis medication in order to not compromise my immune system further. However this meant my arthritis was uncontrolled for 6 months whilst my dental cyst was diagnosed, treated & I recovered. As a result of being off my medication for that period I now experience pins & needles in my feet & legs which they think has happened because of damage caused from high levels of inflammation in my system. I am currently awaiting nerve tests to confirm the cause & extent of the damage.
This only briefly highlights some of the issues that I have experienced, one individual with one type of arthritis & is by no means the complete story. Many won’t experience what I have, they may experience different symptoms depending on the type of arthritis but I am writing this to highlight that arthritis isn’t as simple as just “Creeky Bones” & is still greatly misunderstood by the general public.
It’s not surprising when there are between 100 & 200 different types of musculoskeletal conditions depending on reference cited & many people still view it as a disease of that you get in your elder years. People still don't understand the great impact arthritis has on someone’s health & they often miss how complex a disease arthritis is & that although you may not see an effect outwardly, it can have a deep effect on the individual.
The public needs to be made more aware of the complex nature of arthritis so that to better understand some of the difficulties someone with arthritis may face. To also understand that there needs to be more research conducted & that arthritis research still receives markedly less in funds than other conditions. There also needs to be a more inclusive nature in the campaigns that arthritis charities conduct, as too often they focus solely on older people with disease & when charities do focus their campaigns, they are often at children & teenagers, often missing those in between. This will help to change peoples’ perceptions towards those that are not elderly & have arthritis & may also help with some of the hostility that often these people may face.
Finally if there is anyone reading this that has been newly diagnosed with arthritis, don’t freak out. I know that is harder said than done but arthritis is really very unique to each individual & often people don’t experience the complications I have. However, I have no doubt that it won’t be as you expect & my best advice is don’t panic, don’t think you’ll get everything & become as informed as you can.
Wednesday, 30 July 2014
There will always be bends in the road (& in my bones)
So, I haven't posted in awhile!
Its not because I haven’t wanted to but as life does, it throws up bumps in the road that we can not foresee & everything can come at once.Top that with having a spoonie body & things can easily grind down to a halt.
So, since my last post I have seen the duty rheumatologist (again!), as I have been experiencing pins & needles in my legs since my last flare. The rheumatologist thought it was either steroid diabetes or something wrong with the nerves due to the inflammation I had in my legs. So I’ve been tested for steroid diabetes & its not that so I’m now currently waiting to have nerve tests on my legs… sweet! (urgh)
I’ve have also been diagnosed with another skin condition (my immune system hates me!!). So this means that although my psoriasis is now under control (thanks to my Humira) it is now being replaced with another skin condition, oh the irony!
I’m grateful that my new Doctor is really nice but its been a pain in the backside trying to get appointments because the administration is so messed up. To top it off, I have to also have surgery, luckily it should be small. The bigger issue though is that I will have to be off my arthritis meds for two weeks before & six weeks after, urgh. So there goes my rheumy nurse’s wish for me to have a solid run on my meds. You see this is what a lot of people don’t understand, complications arise & people don’t seem to understand that arthritis is not just a dull ache.
And then to end unfortunately my Dad passed away, I’ve left it until last to write about not because I don’t care, I really do but I just don’t know what to say really. He had been ill for awhile, not that that is a comfort & although things in my family haven’t been simple, many families aren’t simple, I do miss him.
So yep! you get the general gist, its been a bit tough & this doesn’t even include tearing my shoulder muscle or computer problems etc. I’m hoping to start posting again soon but you can see why I haven’t
So bye for now!
Its not because I haven’t wanted to but as life does, it throws up bumps in the road that we can not foresee & everything can come at once.Top that with having a spoonie body & things can easily grind down to a halt.
So, since my last post I have seen the duty rheumatologist (again!), as I have been experiencing pins & needles in my legs since my last flare. The rheumatologist thought it was either steroid diabetes or something wrong with the nerves due to the inflammation I had in my legs. So I’ve been tested for steroid diabetes & its not that so I’m now currently waiting to have nerve tests on my legs… sweet! (urgh)
I’ve have also been diagnosed with another skin condition (my immune system hates me!!). So this means that although my psoriasis is now under control (thanks to my Humira) it is now being replaced with another skin condition, oh the irony!
I’m grateful that my new Doctor is really nice but its been a pain in the backside trying to get appointments because the administration is so messed up. To top it off, I have to also have surgery, luckily it should be small. The bigger issue though is that I will have to be off my arthritis meds for two weeks before & six weeks after, urgh. So there goes my rheumy nurse’s wish for me to have a solid run on my meds. You see this is what a lot of people don’t understand, complications arise & people don’t seem to understand that arthritis is not just a dull ache.
And then to end unfortunately my Dad passed away, I’ve left it until last to write about not because I don’t care, I really do but I just don’t know what to say really. He had been ill for awhile, not that that is a comfort & although things in my family haven’t been simple, many families aren’t simple, I do miss him.
So yep! you get the general gist, its been a bit tough & this doesn’t even include tearing my shoulder muscle or computer problems etc. I’m hoping to start posting again soon but you can see why I haven’t
So bye for now!
Friday, 2 May 2014
#BADD2014: Things are not always what they seem
Please take a seat, sit back & tell me what you see?
You may see the same thing as someone else, you may see many things.
You see perception, is a funny thing.
Its not static, it is changeable & it is different for all of us. Our experiences, personalities, history, the people in our lives & our environment mold it, but it can also lie to us.
I have Psoriatic Arthritis, Hypermobility, Bile Reflux Disease to name but a few & I am also young.
So when I venture out into the outside world society perceives that if you are young, in general you should be “well” but this isn’t always the case. And this is the problem, no one fits perfectly into a “box”, we are all unique, disabled or not. As a result, young people with disabilities visible or not, often experience a great variety of response when venturing outside from good to down right nasty.
I too don’t like putting people into “categories” but in the spirit of saving time & to explain how society can perceive disabled people, please bear with me.
There are people in society who are empathetic & quite often have disabled friends &/or family & so understand more than most how things are & are willing to give help if needed.
Then there are people who are oblivious to you or lack knowledge. This isn’t necessarily purposeful, we all get preoccupied with our own lives at times & if you haven’t come across a particular situation you won’t necessarily react correctly.
Yes, often these people can be confused with those that just don’t care because they sit in the disabled seats so they can have a bit more leg room & don’t offer you the seat when you hobble on to the bus, but often although they are looking at you, they are too preoccupied with their own lives to notice those around them. This is the same when I have had to use a wheelchair & have be stepped or lent over.
This is however not ok, pre occupied or not so to these people please pay attention.
However often when they do spot you, they often ask questions & as long as these questions are not just plainly rude or intrusive most disabled people should be happy to answer them but if not please respect that. I know there are some that aren’t & that’s their choice but especially for those with invisible conditions, if we want things to improve without the need to tattoo it on our foreheads we need to communicate so that people can understand.
I have been asked many questions about why I’m using a stick or I’m in a wheelchair. When they find out I have arthritis they usually say I’m too young because its associated as being an “old age disease” as most people don’t understand there are hundreds of musculoskeletal conditions & even children can have it. I’ve even had people argue with me that it wasn’t possible for me to have arthritis because I’m young which is obviously not ok.
Then I, like many with disabilities have been given “advice” which generally the rule of thumb is if you aren’t disabled yourself best to leave well alone as not to offend.
It has ranged from the wildly misguided to plainly offensive. With comments of have you tried glucosamine, to wrapping myself in copper (copper bracelets, insoles etc), to have you tried exercise & juicing. These won’t cure me, a healthy diet is always beneficial for anyone but to suggest that it will stop my immune system attacking itself is misleading at best & for some very damaging.
One particular topic which can also be offensive is when talking about joint pain & an able bodied person says, “me too.” Our pain is our own & it is significant to each of us but it is not the same as my immune system attacking itself. Another is fatigue. Fatigue is not sleepiness, it’s not “I’ve only had two hour’s sleep”. It’s different for all of us but the most simplistic way I know to describe it for someone with arthritis is, if you think of when you had the flu or a really bad infection how drained you feel, that’s because your immune system is elevated trying to fight infection & for someone with arthritis they live with a immune system that “flares” up far greater than flu & a lot of other infections thus creating fatigue.
I go into more detail about my arthritis here
And lastly there are some people that just don’t care, have prejudices of their own or have been influenced by the media & the Government.
In recent years the news & media have become increasingly biased, with certain newspapers writing a constant barrage of “articles” involving a tiny minority of people who have misused the welfare system. This in no way is representative of those who are disabled & never mentions that not all of those with disabilities don’t work, people do. It also doesn’t cover the difficulties that disabled people face trying to get work & how support to help has been taken away which Bendygirl mentions in her blog here.
Another example of how the disabled community is losing support is DSA. A support scheme that is being striped to the bone. Because of a misperception made from the use of a small survey of students that said most students had a laptop upon entering university & so most will now not be provided with one. Same with note takers & readers & many, many more. As someone that studied in uni as my disability got progressively worse & who is dyslexic, I can not see how this will not make it even harder for disabled people to reach their full potential & for it not to have an impact on the student’s health with the extra strain imposed. This is not as simple as “you need to try harder.” You can read more at Spoonydoc’s blog here.
The media & the government often dresses up welfare reforms as something positive, that they will help more people & improve peoples lives. But policies are mostly ill thought out, with support being removed & more people falling through the net.
But as I have covered before, something doesn’t have to be true for people to believe it, as long as it is repeated often enough, history has taught us that of course this is going to skew peoples’ perceptions. You can see my blog post here
These “stories” have impacted the disabled community significantly. From rude remarks to physical attacks. A common remark heard all too often is “I know so & so who’s faking it” on the basis that they see that person for a moment of their day.
Because of the media & the Government’s influence, at present we have been told that there are many of these “scroungers” lurking in every neighbourhood so perception changes & we try to see what’s often not there, the two faces instead of the vase.
But rarely will you see the effort that it takes for that person to go out & what the costs are. I’m not talking about financial but instead energy & effort because disabled people still want to do things they enjoy, like anyone but the difference is we will pay for it like hell the next day. But because we enjoy it, regardless of the agony we’re in the next day the enjoyment will keep us going & make us feel normal.
But the rest of the time it is learning to pace yourself & find different ways of going about it. For example blogging, I have witnessed many a blogger being harassed, told they’re a scrounger & they should be working but what they don’t understand is they only see what is on their screen, the blog or the tweet but not what is going on behind the scenes. People writing from their beds using their phones & assistive software. Having to change position from their beds to their desks & back again. And of course having no deadline so when your condition throws a tantrum you can rest. Tweeting & blogging connects us to each other & makes us not feel so isolated.
It has also been particularly hard for the disabled community to be portrayed so badly but as a result of this distorted media, a new type of activism has formed within the disabled community, knowledgeable of the bias “news” that’s being reported we found a common bond. The community listened to those affected by the most devastating “welfare reforms” ever seen & over time produced their own reports (Spartacus Report & Beyond the Barriers) when the Government refused to. More of the media is taking notice & more people are seeing things for how they truly are.
It has made the disabled community stronger. However it has also made a certain section of the community harder on others, people saying things like “we must get on, we must not whinge.” I agree we must be strong, however we must understand that there are people that have just been diagnosed, they naturally want to be how they were before, its a loss & they’re trying to work out how to manage their condition & it’s as individual as we are So please, let’s be kind to each other.
But to the rest of you, I would like to ask you to come to your own conclusions based on unbiased research.
So for last time I ask you kindly to look again & tell me what you see. Thanks guys :p
Acknowledgements
I would like to thank my dyslexic head for being a pain & not deciding what it wants to write. I would like to thank there for being so much stupid in the world that my head couldn’t decide what to WRITE! It took me a long time to write it & my “mutant” body did not want to co-operate so I’m sorry its late but this is how it goes some times.
You may see the same thing as someone else, you may see many things.
You see perception, is a funny thing.
Its not static, it is changeable & it is different for all of us. Our experiences, personalities, history, the people in our lives & our environment mold it, but it can also lie to us.
I have Psoriatic Arthritis, Hypermobility, Bile Reflux Disease to name but a few & I am also young.
So when I venture out into the outside world society perceives that if you are young, in general you should be “well” but this isn’t always the case. And this is the problem, no one fits perfectly into a “box”, we are all unique, disabled or not. As a result, young people with disabilities visible or not, often experience a great variety of response when venturing outside from good to down right nasty.
I too don’t like putting people into “categories” but in the spirit of saving time & to explain how society can perceive disabled people, please bear with me.
There are people in society who are empathetic & quite often have disabled friends &/or family & so understand more than most how things are & are willing to give help if needed.
Then there are people who are oblivious to you or lack knowledge. This isn’t necessarily purposeful, we all get preoccupied with our own lives at times & if you haven’t come across a particular situation you won’t necessarily react correctly.
Yes, often these people can be confused with those that just don’t care because they sit in the disabled seats so they can have a bit more leg room & don’t offer you the seat when you hobble on to the bus, but often although they are looking at you, they are too preoccupied with their own lives to notice those around them. This is the same when I have had to use a wheelchair & have be stepped or lent over.
This is however not ok, pre occupied or not so to these people please pay attention.
However often when they do spot you, they often ask questions & as long as these questions are not just plainly rude or intrusive most disabled people should be happy to answer them but if not please respect that. I know there are some that aren’t & that’s their choice but especially for those with invisible conditions, if we want things to improve without the need to tattoo it on our foreheads we need to communicate so that people can understand.
I have been asked many questions about why I’m using a stick or I’m in a wheelchair. When they find out I have arthritis they usually say I’m too young because its associated as being an “old age disease” as most people don’t understand there are hundreds of musculoskeletal conditions & even children can have it. I’ve even had people argue with me that it wasn’t possible for me to have arthritis because I’m young which is obviously not ok.
Then I, like many with disabilities have been given “advice” which generally the rule of thumb is if you aren’t disabled yourself best to leave well alone as not to offend.
It has ranged from the wildly misguided to plainly offensive. With comments of have you tried glucosamine, to wrapping myself in copper (copper bracelets, insoles etc), to have you tried exercise & juicing. These won’t cure me, a healthy diet is always beneficial for anyone but to suggest that it will stop my immune system attacking itself is misleading at best & for some very damaging.
One particular topic which can also be offensive is when talking about joint pain & an able bodied person says, “me too.” Our pain is our own & it is significant to each of us but it is not the same as my immune system attacking itself. Another is fatigue. Fatigue is not sleepiness, it’s not “I’ve only had two hour’s sleep”. It’s different for all of us but the most simplistic way I know to describe it for someone with arthritis is, if you think of when you had the flu or a really bad infection how drained you feel, that’s because your immune system is elevated trying to fight infection & for someone with arthritis they live with a immune system that “flares” up far greater than flu & a lot of other infections thus creating fatigue.
I go into more detail about my arthritis here
And lastly there are some people that just don’t care, have prejudices of their own or have been influenced by the media & the Government.
In recent years the news & media have become increasingly biased, with certain newspapers writing a constant barrage of “articles” involving a tiny minority of people who have misused the welfare system. This in no way is representative of those who are disabled & never mentions that not all of those with disabilities don’t work, people do. It also doesn’t cover the difficulties that disabled people face trying to get work & how support to help has been taken away which Bendygirl mentions in her blog here.
Another example of how the disabled community is losing support is DSA. A support scheme that is being striped to the bone. Because of a misperception made from the use of a small survey of students that said most students had a laptop upon entering university & so most will now not be provided with one. Same with note takers & readers & many, many more. As someone that studied in uni as my disability got progressively worse & who is dyslexic, I can not see how this will not make it even harder for disabled people to reach their full potential & for it not to have an impact on the student’s health with the extra strain imposed. This is not as simple as “you need to try harder.” You can read more at Spoonydoc’s blog here.
The media & the government often dresses up welfare reforms as something positive, that they will help more people & improve peoples lives. But policies are mostly ill thought out, with support being removed & more people falling through the net.
But as I have covered before, something doesn’t have to be true for people to believe it, as long as it is repeated often enough, history has taught us that of course this is going to skew peoples’ perceptions. You can see my blog post here
These “stories” have impacted the disabled community significantly. From rude remarks to physical attacks. A common remark heard all too often is “I know so & so who’s faking it” on the basis that they see that person for a moment of their day.
Because of the media & the Government’s influence, at present we have been told that there are many of these “scroungers” lurking in every neighbourhood so perception changes & we try to see what’s often not there, the two faces instead of the vase.
But rarely will you see the effort that it takes for that person to go out & what the costs are. I’m not talking about financial but instead energy & effort because disabled people still want to do things they enjoy, like anyone but the difference is we will pay for it like hell the next day. But because we enjoy it, regardless of the agony we’re in the next day the enjoyment will keep us going & make us feel normal.
But the rest of the time it is learning to pace yourself & find different ways of going about it. For example blogging, I have witnessed many a blogger being harassed, told they’re a scrounger & they should be working but what they don’t understand is they only see what is on their screen, the blog or the tweet but not what is going on behind the scenes. People writing from their beds using their phones & assistive software. Having to change position from their beds to their desks & back again. And of course having no deadline so when your condition throws a tantrum you can rest. Tweeting & blogging connects us to each other & makes us not feel so isolated.
It has also been particularly hard for the disabled community to be portrayed so badly but as a result of this distorted media, a new type of activism has formed within the disabled community, knowledgeable of the bias “news” that’s being reported we found a common bond. The community listened to those affected by the most devastating “welfare reforms” ever seen & over time produced their own reports (Spartacus Report & Beyond the Barriers) when the Government refused to. More of the media is taking notice & more people are seeing things for how they truly are.
It has made the disabled community stronger. However it has also made a certain section of the community harder on others, people saying things like “we must get on, we must not whinge.” I agree we must be strong, however we must understand that there are people that have just been diagnosed, they naturally want to be how they were before, its a loss & they’re trying to work out how to manage their condition & it’s as individual as we are So please, let’s be kind to each other.
But to the rest of you, I would like to ask you to come to your own conclusions based on unbiased research.
So for last time I ask you kindly to look again & tell me what you see. Thanks guys :p
Acknowledgements
I would like to thank my dyslexic head for being a pain & not deciding what it wants to write. I would like to thank there for being so much stupid in the world that my head couldn’t decide what to WRITE! It took me a long time to write it & my “mutant” body did not want to co-operate so I’m sorry its late but this is how it goes some times.
Monday, 28 April 2014
One of "those" doctors
Yesterday
I read a blog post a friend had tweeted out about a Doctor in the US
that has a radio show & what transpired.(See link to Red Hairings
blog here)
I have had Doctors not pay an ounce of attention to what I have said because they have already made their own assumptions. I’ve been ill in hospital & on several occasions had one of these bozos show up, intent on not listening to a word I would say which particularly on one occasion led to what the hospital calls an “incident” which is code for messing up so badly it could have risked my life.
Thankfully Mr Techie Carer insisted on a second opinion when I just wanted to go home.
And thats the thing. If you’re in hospital especially in A&E you’re likely going to feel awful & be in pain, couple this with a doctor unwilling to listen & its easy to feel upset & despair. And if you did get upset or cry it seems to validate what they were saying to their mind. I have no doubt that people with mental health issues face even further problems with the “its all in your head” stigma.
But when Mr Techie Carer came into the picture & would meet these type of doctors with me, they still wouldn’t listen but then he would back up what I was saying or repeat it & suddenly what we were saying was accepted.
I can’t help but think is the magic trick that you need a penis or two people??
This of course doesn’t work every time but usually in these cases I have learnt to play the wait music in my head & tune them out whilst they redirect all their doctrine at him (poor guy) & then we ask for a second opinion from the other hospital because unfortunately when they make up their mind, there’s nothing more to say.
I’m extremely glad of the support of my partner but people alone & understandably overwhelmed shouldn’t have to go through this.
However, saying all of this, there are some fantastic doctors like my GP who always has time for you, listens & works with you. These doctors are the ones that trundle away in the background, want to get to the bottom of things, keep everything going & don’t call themselves experts.
And you may be an “expert” but we all have something we can learn.
Saturday, 5 April 2014
My spoonie self & shinanigans
This has summed me up recently. I have come to the ultimate realisation that baby gremlins have been slowly stealing my spoons over time & making off with them, little scamps.
Well since my last update I'm still in a bad flare up, my arthritis has given my bones a heck of a beating but finally I’m back on my arthritis medication (Humira). I’ve always imagined Humira as a sweet guide/friend for my ever confused immune system, forever trying to steer it in the right direction & away from beating itself over the head with a frying pan.
When I finally got the ok to go back on my medication, my rheumy nurse made me an appointment to see the Locum rheumatologist. Obviously they were concerned how my poor bod was fairing & thought it was likely I would need a steroid injection to calm down the inflammation until the Humira was back in my system again.
He was a really nice guy, who had trained overseas & didn't agree with the UK system of steroid injections instead favouring tablets. I can understand why, its a logical argument as steroid tablets give u a balanced dose whereas an injection gives you a large dose that fades off over time.
However, I was reluctant to accept the tablets as I was concerned about how my stomach would fare, as I had had tablets before & knew they could be quite harsh but he reassured me it would be fine.
Sure enough it wasn't & I had to stop the tablets after bringing up dollops of blood as my stomach couldn't handle it. So I went to my GP & received a kind reprimand saying that "You know your body, you shouldn't be on them & not to take them again" & after all of that, I had the injection after all.
A month or two later although the first injection helped, I was still in a flare so my rheumy nurse arranged for me to have another. I held off, wishfully thinking that my Humira would kick in but alas no & I had to admit defeat at my next appointment where she confirmed that I had bursitis in my hips. I can only describe feeling as like gremlins gnawing on the bone....painful. But even this wasn't enough & I had to have another, this time directly into the joint. We'll just have to wait & see if it works.
I never thought when I was first diagnosed, that in my wildest dreams that arthritis would mean this. Oh how I lacked knowledge of what living with arthritis truly meant.
When most people think of arthritis, they think of "creaking joints" & being the equivalent of a human weathervane. But often people don't understand that it doesn't simply affect your joints & different types of arthritis affect people differently.
I have Psoriatic arthritis & associated issues that people often don't know about include fatigue which is really common, that you are more prone to dental issues, tendinitis, inflammation in the eye & other organs to mention a few.
There are often also complications due to medication like being immune suppressed, that can lead to infections & additional conditions along side AKA in my case having an infected dental cyst.
Thankfully the wounds are healing up as they should after surgery & as I know I am more prone to issues, I'm going to be dragging myself to see my dentist more frequently despite how phobic I am & how much I want to hobble out of there as quick as I can!
Also my awesome, if not a bit quirky Physiotherapist arranged for me to have thumb splints because my thumbs slip in & out of place due to my hypermobility, it can be pretty severe so hopefully these will help to stabilise my hand. It also doesn't help that because I had to be off my arthritis medication for over 6 months I now have damage in my right middle finger which along side my dislocating right pinky has made my right had pretty unstable.
Additionally I had to have a manometry pH test. Which first involves going off all the medication that helps you not be sick & then sticking a very uncomfortable tube down your nose & slowly bringing it back up whilst asking you at certain points to swallow sips of water. After this they remove the tube & “kindly” replace it with another which they leave in for 24hrs.
The first test is to see how your throat is working. They found my throat squeezes too hard in the middle which explains why for me, bile randomly comes up of its own accord without me needing to cough or be sick (although that does happen) which doctors usually ask which is the case & are perplexed when I usually say neither.
The other part is to see if there is acid reflux present which for me there isn't (which I knew) but the test did reconfirm bile reflux disease.
And the other main thing I’ve been doing is sorting out my hard drive. Which is no mean feat given that due to my spoonie body I often haven't had the spoons to sort it & that it is filled with duplicate documents so it has got to the point that I really must. We also got a Western Digital wireless hard drive that I’m hoping will do the trick.
I should be doing another post soon when the spoons allow, bye for now!
Friday, 3 January 2014
Happy New Year
So welcome to 2014!
2013 was a odd year, lost my bunny that hadn’t been well for a while, we then got a beautiful mini lop that unfortunately passed away so young but the short time we had with him was so precious. Then we have our current mini lop Aslan who is so beautiful, even if he has issues (I think he thinks he’s a puppy). He’s such a content bunny.
Health wise it has been pretty poor, stomach bleeds which finally lead to me being diagnosed with bile reflux disease. I have got further tests to have on my stomach & throat & throughout the year doctors have suspected a range of pain disorders including Fibromyalgia to go along with the Arthritis, Hypermobility & such.
Also as with every year I have had to deal with something that I know I’m not alone with, that many people deal with the same but its also something that many people don’t understand is an additional complication in someone’s condition & how it makes a condition very unstable.
I have to take medication for my arthritis which means I’m immune suppressed, this means that I often get infections, so then I have to stop the medication, my arthritis flares up & the infection makes this worse, I get over the infection then I have to restart the cycle all over again.
Its frustrating as you never truly establish a plateau level with your condition but this for some is unrealistic & instead I’ve found my efforts are best placed trying to learn to live with a condition that is unpredictable.
This year this has occurred many times but the main occurrence was when I had to go over 6 months without meds, arthritis flared up pretty bad & later found out that I had a cyst in my face resulting in surgery.
2013 was definitely a year of what’s next in politics, knowing that some knee jerk reaction to put another poorly thought out ‘plan’ into action at the last minute would happen in response to something someone might have said or done & wondering how bad the fall out will be. The years of knowing nothing would happen until the budgets are long gone & it is sad knowing how much anxiety people are facing, knowing that the rug may be pulled from underneath them at any time. How do you relax? & concentrate on your health?
I also found such a massively determined set of people that won’t be silenced, that deal with a range of health problems & disabilities themselves but know how important it is that the facts reach the public and that people shouldn’t be scapegoated.
I have my own ideas & wishes for the year ahead & have learnt through the years that plans may get derailed or they may have to wait as my spoonie body takes over however frustrating that may be but things can get done with a little time & a lot of stubbornness.
Saturday, 14 December 2013
17# Weekend cute, humour & awesome
My body has not wanted to do anything & hasn’t co-operated at all due to my arthritis flaring up & my hypermobility playing up. Don’t get my started on my stomach >.<
Hope everyone has a brilliant week to come
(I do not own the images but respect the awesome)
Wednesday, 11 December 2013
A Spoonie body, politics & a cute fluffy bunny.
So I haven’t been able to do much that I’ve wanted to do recently as
my body has been taking its sweet time to decide whether or not to heal
after my surgery & because I have been off my arthritis medication
for so long my body is taking a real battering with a lot of
inflammation in addition to what I normally have. Also with my arthritis
flaring up the fatigue has been worse with it. Fatigue as always is so
fricking inconvenient, with you not being asleep nor awake, losing hours
at a time.
It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”
So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.
Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.
I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.
Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.
They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.
http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html
This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.
I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.
We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.
Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.
So here is the little cutie
And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.
http://epetitions.direct.gov.uk/petitions/43154
It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”
So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.
Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.
I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.
Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.
They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.
http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html
This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.
I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.
We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.
Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.
So here is the little cutie
And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.
http://epetitions.direct.gov.uk/petitions/43154
Monday, 18 November 2013
A lack of understanding
So hi there!
So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.
I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.
I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?
My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.
In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.
It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.
Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.
So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)
Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.
In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.
The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.
So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.
So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)
By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.
So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.
When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.
In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.
They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.
So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.
However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.
So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.
The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.
So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.
So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’
I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.
The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.
However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.
I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.
If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.
Anyway I hope that I can get back to normal posting :)
So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.
I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.
I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?
My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.
In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.
It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.
Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.
So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)
Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.
In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.
The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.
So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.
So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)
By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.
So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.
When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.
In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.
They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.
So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.
However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.
So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.
The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.
So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.
So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’
I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.
The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.
However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.
I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.
If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.
Anyway I hope that I can get back to normal posting :)
Sunday, 13 October 2013
World Arthritis Day
My diagnosis
I struggled tremendously to get diagnosed, it took years. I started experiencing mild niggling symptoms when I was about 15 on & off until I was about 18 when the symptoms got much worse beginning in my knee. I was sent to see a physiotherapist by my doctor at the time, as I had a golf ball type swelling on the top of my knee & he was the first to suggest & was convinced that I had arthritis. So off I went back to the doctors to tell them what he had said but they were convinced that I was far too young to have arthritis. In the end they conceded enough that they agreed that there may be at least something wrong with the mechanical side so sent me to orthopedics, one MRI later & they confirmed that it was arthritis.
1. You’re too young to have arthritis & why do you walk with a stick?
I have had full blown arguments in the past with people that have argued, sometimes nastily, that I couldn’t possibly have arthritis because I was too young. Most people that have approached me, have thought that I walk with a stick because I must of hurt my leg in some way, they never think that its arthritis.
Unfortunately people are less aware that young children can have arthritis so it really affects people of any age.
2. What kind of things do people say when people find out I have arthritis.
Can’t they cure it? No at best they can manage it
But I’ve read that supplements, diet & exercise changes can cure it? Again no, although a healthy diet & low impact exercise (which not everyone can do) would help a little for people with inflammatory arthritis, supplements such as Glucosamine, diet & exercise isn’t a cure.
I’ve tried to think of the best way to explain inflammatory arthritis. I live with it & I’m still trying to understand it. But I’m going to try & explain it briefly
Inflammation occurs naturally when people are sick or injured, if you did a blood test some of the same markers may come up in someone with inflammatory arthritis but they would also have additional blood markers. Someone with inflammatory arthritis still gets inflammation if they’re sick or injured but their body also produces an inflammatory response that starts to attack the body affecting bones, tissue & cartilage. People experience an array of symptoms including pain, discomfort, stiffness & fatigue & scientists are still not certain as to why it occurs
This is in contrast to osteoarthritis which is degenerative & without the inflammatory response seen in inflammatory arthritis.
People with osteoarthritis still have pain & discomfort but that’s because there is damage present whereas with inflammatory arthritis the pain can be present even before bone damage has occurred as well as after.
This is why for example for some people with osteoarthritis, exercise to strengthen the muscles around an affected joint can help support it, whereas although it is beneficial to have strong muscles for someone with inflammatory arthritis, unless the inflammatory response is treated with medication, minimal benefit could be achieved and this seems to be where peoples’ misunderstanding lies.
3. So if you have a certain type of arthritis is everybody affected the same way?
You guessed it, Nope. I have Psoriatic Arthritis which some people may be affected quite mildly by but i’m one of the few that get affectef quite significantly. I also like many have additional conditions as well as my arthritis.
4. So what is it like dealing with your arthritis?
My day to day living - I have difficulty doing various tasks even personal tasks (that i’m not going into) but even being able to brush my teeth can be too painful because of my wrist, similarly with other tasks around the house. This also includes any task that includes sitting, standing or walking. Kneeling is out of the question.
Going out - For example you may want to go to an event so you book tickets & go. For someone like me you would need to….
Check accessibility. Are there seats? can they provide wheelchairs? if not, can we hire one nearby? what if there’s too many people & we start getting crushed? & then plan the travel arrangements & then back up arrangements & booking assistance for the travel arrangements & so forth.
Then additionally we have to deal with various GPs, Consultants, nurse & physiotherapist appointments & such & not just for my arthritis. It’s common for me to have three appointments a week but as my Gp said dealing with long term chronic conditions is like doing a full time job when you’re sick all the time.
I’m not going to go into more of the personal details of how my arthritis affects me because I have to explain so often to doctors & in forms that if I don’t have to I don’t want to :)
However, I am very thankful & lucky to have the support of my amazing fiancee & carer who helps me greatly.
5. How do people treat you?
People seem to fit into three categories.
The ones in their own bubble who don’t see you so may inadvertently walk into you or ignore you without knowing.
The people that do see you, may glare at you, muttering things at you or verbally assault you. Unfortunately these people believe the propaganda, that there is huge benefit fraud, that things are harsher for them because people are getting huge amounts in benefits & receive things that they don’t.
I think that there is a misunderstanding of benefit entitlement, that people believe you must be bed bound to qualify & they don’t understand how difficult it is to manage a disability & maintain any level of normality.
And finally the last group of people that have an understanding of disability, usually because they know someone that has a disability.
For me personally, although at the start I had just a few niggles, now I’m always in some degree of pain (not just because of my arthritis) & things that you never needed to consider without the disease you now have to. I have found a great way to explain the types of compromises that people have to do when dealing with a disability is through the spoon theory.
I’ve covered a fraction of what its like to have arthritis but the best thing to come through more awareness, would be for people to see a girl struggling to get on a bus with stick in hand & instead of ignoring her existence or thinking shes a fraud, offer a seat before she stumbles? Please educate yourself as intolerance can be worse than dealing with the condition itself.
There are many types of muscular diseases. Depending on the source there are up to 200 hundred different types which shows how there needs to be more awareness & that for each type we are all affected individually. People need to start asking if they’re unsure (reasonable questions) & for us to be open to answering them.
Stay awesome & at all times keep hold of your spoons :)
Useful resources on arthritis
Arthritis Care - For support & information, they have a helpline & forum
Arthritis Research -For further information
What I have written about is only a fraction about my condition & what I experience. Each condition can affect each person differently. If you are worried or want further advise there are many resources available don’t worry in silence :)
Tuesday, 17 September 2013
Cute "Animal Knee high Socks"
I’ve always liked unusual, unique & geeky fashion. I saw these socks on Next’s website & just thought how awesome they were. I found I pretty much live in long socks especially in the colder months, knee high socks are a god send.
I’ve found they are especially critical for me having arthritis as my joint pain does increase especially in harsh weather & i’ve had times where i’ve been violently shaking because I was ‘THAT’ cold so anything that lessens that even a bit is appreciated.
I always find it nice when I am able to find colourful socks especially as long socks can be often in boring colours. They are priced at £6, the quality seems fairly good however there are some untidy threads on the inside that can cause problems occasionally. I will let you know if any issues arise.
Saturday, 7 September 2013
My wonky ‘OS’, hospitals & randomness!
So I haven’t done any posts recently, mostly because my uncooperative
“OS” has been malfunctioning as it does, making the most simple of
tasks less straight forward as anyone with a disability can relate to.
This has included but not exclusively, inflammation in my shoulder with my wrist & hip slipping out of its socket plus tendinitis in my foot.
Also I’ve had “trochanteric bursitis” which I have to say I had never heard of but again it’s more inflammation, this time in the hip joint. I’ve been having pain running down my tight bone & was beginning to think it must be my head until my rheumatology nurse said otherwise.
I think that after years of having to cope with my previous rheumatology team that instead of helping you, made you feel continuously guilty & that you must have some how caused your immune system to ‘malfunction’ & so there for you should feel guilty about your arthritis.
I can’t remember how many times I had come out of an appointment crying, feeling utter despair & how many times I had felt that because of what they had said implying the pain must be in my head & no one wants pain, so why wouldn’t it just go? I had reached the point that I would rather grimace in pain than go back into that room.
So I went to my GP because I knew deep down that what they had been telling me was not true & that I wasn’t getting the treatment I needed. He was angry & asked for a second opinion at a neighbouring hospital. I went and she was NICE, so nice & kind & agreed I wasn’t getting the treatment I needed. She asked me did I want her to write to my consultant or did I want to move? I ripped her hand off, I wasn’t going to go back to that hospital.
It’s not perfect, my new hospital but I think a nice touch is them not laughing at me & although even with the new treatment I’m on Isn’t fully managing my arthritis as I still have inflammation & joint damage its still more effective than what I was on which shows how important getting treatment is.
Also I some how managed to dislocate my little finger with nothing more than the slightest of pressure. Thankfully I managed to pull it back into place which my GP agreed was the most sensible thing to do & to do the same if it happened again, which although i’ve had some close calls thankfully it hasn’t as of yet.
And I think that the sad thing is that when he believed me without question that it was so nice. Not because I was hurt but in the past when i’ve told doctors something happened including my old rheumatologist it wasn’t uncommon not to be believed. Which I find insane & through them not believing me I feel like a fraud but also suffered from not getting the treatment I needed.
The thing is although my treatment has improved since leaving the other hospital my treatment is still lacking in areas. NHS resources are badly stretched & this vital service seems to be struggling. One of the other rheumatologists in the team has left, which has meant that my rheumatologist is taking on more patients even though they are deeply stretched as it is. There seems to be a pattern in the NHS when people aren’t “let go” the staff instead aren’t being replaced when they leave which I hope isn’t going to be the case.
So will patients suffer? undoubtedly yes in my opinion because as much as my rheumatologist is great even she doesn’t have enough time to make certain that I get the correct level of monitoring, that any non standard tests are issued & that issues are investigated deeper.
They are trying their best to keep everyone’s head above water reacting more to people in the more extremes of their illness than having the ability to keep people stable or to improve difficult cases further.
Don’t get me wrong, I am extremely grateful for the NHS even when the service is patchy as I know there are people left without even basic health care in certain parts of the world. However we should strive for better whether a condition can be stabilised or not. People should have as much health care as they need to improve their quality of life in what ever way possible, however small.
I have experienced the best & worst of the system. As I’ve mentioned my last rheumatology team was abysmal, where as my new Physiotherapist is awesome & is as ‘special’ as me. She really wants to help anyway she can & so seems to have invented a ‘pick a mix’ method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….
……………But no promises ;)
This has included but not exclusively, inflammation in my shoulder with my wrist & hip slipping out of its socket plus tendinitis in my foot.
Also I’ve had “trochanteric bursitis” which I have to say I had never heard of but again it’s more inflammation, this time in the hip joint. I’ve been having pain running down my tight bone & was beginning to think it must be my head until my rheumatology nurse said otherwise.
I think that after years of having to cope with my previous rheumatology team that instead of helping you, made you feel continuously guilty & that you must have some how caused your immune system to ‘malfunction’ & so there for you should feel guilty about your arthritis.
I can’t remember how many times I had come out of an appointment crying, feeling utter despair & how many times I had felt that because of what they had said implying the pain must be in my head & no one wants pain, so why wouldn’t it just go? I had reached the point that I would rather grimace in pain than go back into that room.
So I went to my GP because I knew deep down that what they had been telling me was not true & that I wasn’t getting the treatment I needed. He was angry & asked for a second opinion at a neighbouring hospital. I went and she was NICE, so nice & kind & agreed I wasn’t getting the treatment I needed. She asked me did I want her to write to my consultant or did I want to move? I ripped her hand off, I wasn’t going to go back to that hospital.
It’s not perfect, my new hospital but I think a nice touch is them not laughing at me & although even with the new treatment I’m on Isn’t fully managing my arthritis as I still have inflammation & joint damage its still more effective than what I was on which shows how important getting treatment is.
Also I some how managed to dislocate my little finger with nothing more than the slightest of pressure. Thankfully I managed to pull it back into place which my GP agreed was the most sensible thing to do & to do the same if it happened again, which although i’ve had some close calls thankfully it hasn’t as of yet.
And I think that the sad thing is that when he believed me without question that it was so nice. Not because I was hurt but in the past when i’ve told doctors something happened including my old rheumatologist it wasn’t uncommon not to be believed. Which I find insane & through them not believing me I feel like a fraud but also suffered from not getting the treatment I needed.
The thing is although my treatment has improved since leaving the other hospital my treatment is still lacking in areas. NHS resources are badly stretched & this vital service seems to be struggling. One of the other rheumatologists in the team has left, which has meant that my rheumatologist is taking on more patients even though they are deeply stretched as it is. There seems to be a pattern in the NHS when people aren’t “let go” the staff instead aren’t being replaced when they leave which I hope isn’t going to be the case.
So will patients suffer? undoubtedly yes in my opinion because as much as my rheumatologist is great even she doesn’t have enough time to make certain that I get the correct level of monitoring, that any non standard tests are issued & that issues are investigated deeper.
They are trying their best to keep everyone’s head above water reacting more to people in the more extremes of their illness than having the ability to keep people stable or to improve difficult cases further.
Don’t get me wrong, I am extremely grateful for the NHS even when the service is patchy as I know there are people left without even basic health care in certain parts of the world. However we should strive for better whether a condition can be stabilised or not. People should have as much health care as they need to improve their quality of life in what ever way possible, however small.
I have experienced the best & worst of the system. As I’ve mentioned my last rheumatology team was abysmal, where as my new Physiotherapist is awesome & is as ‘special’ as me. She really wants to help anyway she can & so seems to have invented a ‘pick a mix’ method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….
……………But no promises ;)
Friday, 19 July 2013
Its all about perspective.
(Here is a picture of my beautiful long furred baby Syrian tucking into some cucumber to cool down)
It has been hot this week & today is no exception & it is indicative of us brits to whine when its hot & to whine when its cold.
But lets take some perspective here, I’m really hot & I could wine but it wont make me any cooler & I have two beautiful long furred Syrians & the baby of the two’s fur is like silk & wool. Now we have been keeping them both cool but especially today the baby has had his moments when I’ve found him either lying ‘splat’ on his front or on his back with all his feet in the air. I would be lying if i said he hasn’t whined (he really can for a hamster) but I cool him down again & he gets on with it & snuggles down to fall asleep.
Now the difference is I could think of only of me & whine about how hot it is but I have the ability to strip off to my birthday suit if I so wished (with the blinds down not to scare the neighbours of course lol) whereas my beautiful little hamster doesn’t have such an option.
This is my point. Its ok to whine as long as afterwards we put it into perspective & carry on with what we are dealt because any whining is only going to increase our own suffering. I understand that this is not always possible & especially for people with disabilities because the light at the end of the tunnel may seem so dim & we all have times like this. But for all the benefit bashers out there I can not understand for one minute why you can not be grateful for your lot? why people make stupid suggestions like people should only have food stamps & such? Why can’t you be grateful for your health & what ever you do have because putting other people down wont make you a ‘cooler hamster’
And
To you all " Just keep swimming"
I dedicate this post to a beautiful soul who after battling with cancer earned her wings, Talia Castellano.
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