So I met Jeremy Corbyn.

So me and Techiecarer went to hear Jeremy Corbyn speak.

Even though we arrived early the hall was already packed. Asking for help we managed to get seated after someone had kindly offered their seat. Before the event had started the hall was filled with people spilling out of the doors and crowding around the entrance of the hall desperate to hear him speak. I obviously thought that this was likely as the same scenario seems to have been played out up and down the country. So arriving to a rapturous applause he began his speech.

He was the first politician I have ever heard to categorically state that those on welfare are not to blame for the UK’s problems, that we should be proud of the welfare state, that the NHS should be free from the point of use and that society has failed so many people in need of mental health treatment. That immigrants fleeing atrocities should be seen as people in need and not as swarms, as if they were non human. That we need to invest, tackle tax avoidance and increase public housing and pay. That we should have more public ownership, look after our environment and invest in education. That people should be able to learn what they want without worrying about fees at any point in their life. For the most part I agreed greatly with what he said even though I still have some questions on some of his policies.

After his talk he took random questions from the audience.

He then dashed around to talk and take selfies with everyone that wanted one. There were people at the event who were obviously struggling in their lives but he approached them with no less interest than anyone else and listened to what they had to say. Too often politicians seem awkward when talking to ordinary people and it was nice to see they were treated no differently.

Initially I didn’t think I would manage to grab a word with him, I was low on spoons and trying to ask something in a crowded room is not the easiest especially as I was sitting down. I thought I would only have a second as he was rushing to another event but he stopped and smiled. I spoke to him about how the disabled community felt especially about Labour’s actions and the discrimination faced due to the negative stereotypes portrayed in the media. He answered and when I mentioned my health asked about how I was managing. I also spoke to him about care leavers and he actively asked about my experiences.

Although he was in a rush I can honestly say there was not a moment where I felt he wanted to rush the conversation. I shook his hand and he reached to the side of me to shake Techiecarer’s hand, as well as the lad to the other side of me.

The main point that resounded with me from his speech is when he stated that no party has the automatic right to exist and that the public should play a part in helping shaping its policies.

I have supported the party in the past, as well as other parties but more recently like others I haven’t felt like I could. Labour's inaction to hold true to its roots has been infuriating. The election campaign was run on an attitude that voters must vote for Labour otherwise the Tories would get in and that voters must accept austerity light. That any disgruntled Labour voter who votes instead for another left wing party are allowing the Tories to get into power and obviously this attitude did nothing to win voters over. Throughout the Labour leadership campaign, the other Labour candidates and political commentators have stated that Labour lost the general election because it was too left wing. The fact that they state this shows how little they are listening to the public. Labour lost because it was offering austerity light. So people either decided not to vote or instead voted for other left wing parties. Instead of coming to the realisation that people were voting for other parties because they didn’t believe in Labour's policies, Labour decided to attack them stating how much their vote would be wasted. It is true that under the current electoral system for Westminster that these votes are more often than not “lost” but Labour did not understand that people wanted to vote for policies they believed in and I respect anyone holding on to what they believe in.

It is often stated that people do not care about politics any more but if that was truly the case why is this man packing halls up and down the country with people spilling out of the doors and jumping up to windows in the hope to hear what he wants to say?

Yes Corbyn could be like any other politician, this could be an act and he could totally change if he becomes leader or even prime minister but at the moment he seems to have been the most genuine politician that I have met. There is also no guarantee that the party, like any other might not backtrack on any election promises made. With how current opinion is within the Labour Party, there has been doubt cast on whether the party will allow him to lead if he gets elected as leader.

But you can not tell me that people aren't interested in politics, they just want policies they can believe in, an alternative whatever the party.

#BADD2015: Don't shove me into your stereotypical box.

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)

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.

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.

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

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.

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)

For me he sums up one of “those” Doctors, that think so highly of themselves & because they are convinced they are an expert, that they don’t need to listen to what the patient is telling them & instead come up with their own random conclusions. I think many with chronic illnesses have met this type of doctor before & I am one of them.

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.

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!

Who cares about carers?

I have heard many a time on forums & such people stating, why should we pay a benefit to people for caring when surely if they care & love the person in question that requires the care, they would do it anyway?

The thing is, yes they all would.

Caring includes everything from round the clock nursing, to completing some tasks & aiding the disabled person to do the rest themselves, to being more of a personal assistant.

It’s not about the grand sum of £59.75, if the short change that the government pays to carers was paid to a care provider to instead provide the ‘care’ it would equate to £1.70 an hour & I can’t see any outside care company providing anything for that, no where near close to the minimum wage.

This you are only entitled to if you provide 35hrs of care, of which there are many carers that provide way over this many providing 24hr care, always on call with very little respite & others that provide less & don’t get the “marvellous” sum of £59.75 but still care & aren’t any less valuable

Carers & the disabled people they care for don’t want pity mind you. Although disabled people have some limitations due to their disability, it doesn’t mean that they don’t have aspirations. By completing the tasks that the disabled person can’t do or the tasks that would take so much out of them, can mean the difference between the disabled person just ‘existing’ & the disabled person being able to concentrate on some of their own life choices whether this be working, studying, arts & crafts etc. Disabled people in this country have valuable contributions to make to society & their carers are vital in enabling disabled people to fulfil their life choices.

Carers also look after friends or relatives that are living with some of the most challenging or terminal of conditions. For a carer to slowly see their loved one taken by dementia for example must be heartbreaking, to slowly lose someone you care about over time.

People also don’t realise how heartbreaking it can be to watch someone you care about so deeply go through pain & illness. I myself always deal with a level of pain all the time, people often think how the disabled person is dealing with their condition but often the distress that the carer feels is often overlooked.

Carers often see & face the hostility that disabled people have to contend with from certain sections of society.

Carers are often the people that fight your corner for what you need, often it can be when rushed to hospital & as you are too ill, you no longer have the strength to argue yourself to remain in the hospital for treatment (you would rather be in your own bed) as the Junior Doctor fails to fully understand your condition & the gravity of the situation & wants to send you home. Your carer fights your corner, makes a “fuss”, insists on being seen by the registrar which when you do, they apologise as the information you had given the Junior had not been shared & now the registrar understands the gravity of the situation & how serious it could have been. The carer had seen it all along, this isn’t unusual.

I always wonder were carers fit into the Conservative’s “Hardworking Britain ?”

I detest this statement, what is your definition of hardworking? Would a person that owns a multi billion dollar company be your idea of hardworking because they make so much money? Would they still be the ideal hardworking person if their company dumped chemical waste & exploited their workers? Would they still be the ideal person if they never saw their family?

Just because a person may not make millions, does it mean that their contribution is any less?

Hardworking has nothing to do with the amount in which you are paid, some of the most important things that keep our society together are done by people that get no or little financial reward. We must focus on making a conscientious society & as well as a strong economy but not one where the focus is on obtaining the biggest financial reward at any cost to society.

Carers are deeply under valued & unappreciated by the state but they don’t care for people because the state tells them to, they see they are needed & are valued enormously by the people they care for. Our ability to care is one of the best aspects of humanity & if carers stopped caring the cost to the state would be enormous. The fact is that even with giving this small amount of £59.75 (too low in my opinion) to the carers in this country, it is much more “cost effective” than if the country had to employ an army of carers. It also means that even a small amount can allow the carer a break & allow them to do something they enjoy. Caring isn’t the same as looking after a loved one that has the flu. Many people often don’t understand the effort that people put into caring often the putting the person they are caring for before themselves & often can’t have a ‘day off’.

The thing is you can’t put a price on the care & support that the carers of this country provide

Carers enable, carers are anyone. They are wives, husbands, sisters, brothers, mothers, fathers & friends & regardless they will always keep on caring.

Carer’s UK

The Big Benefits Row: Facts, fiction & a whole lot of yelling

The show began first with a montage of multiple clips from the bewildering amount of benefit shows that have been produced recently from it being mentioned in the papers, to the news, in documentaries & through benefit bashing tv.

The long & short of it is, the small percentage of fraud that occurs is drowned in the sea in coverage it receives & I think this is the single most important point that people don’t understand. This is a trend that has been seen throughout history, that it is not necessarily a reflection of the reality of the time but instead reflects the attitudes of society which I covered a bit in  The evolution of benefit tv.

Question 1: “Do you think the benefits system is fit or unfit for purpose?”

Apparently 66% believe that it isn’t.

I’d love to know how many people actually know what support the benefit system provides & how many voted unfit because they were thinking instead about even with the countless forms filled in & assessments people have, that many people found “fit for work” are having their benefits reinstated on appeal.

At the start you had Katie Hopkins as usual never pausing for a moment to engage her brain before running her mouth. She started as many have done on this topic trying to pass off prejudices & stereotypes as fact but was pulled into reality by Mathew Wright.

Then Mathew Wright explained that they wanted to separate the facts from fiction.

FACTS?!?!?!?

Excuse me while I wet myself in delight at a show that is presenting the facts instead of perpetuating myths further.

Matthew Wright highlighted that tax evasion is far greater than benefit fraud (with the resources dedicated to tackling this far lower) & Annabel Giles spoke brilliantly even with Katie attacking her in a childish voice that she “wanted to be a model & didn’t make it”.

Katie went on further about people having multiple children & was quickly told it is a very small minority, not the norm. This was followed with people on housing benefit living in posh neighbourhoods, again not the norm & this was finished of with remarks about how “hardworking Britain” had had enough of going to work & seeing people staying at home, this being said without any thought to what the person behind the curtain may have to contend with.

Question 2: “Do you think the portrayal of people on benefits is fair or unfair ?” A close split.

Peter Stringfellow like many doesn’t consider a pension a benefit. He said that his main concern was the “abuse, not the majority of people. I’m looking at people over there” (pointing to the people in wheelchairs) “that deserve everything they can get”. But when Mathew pointed out that the abuse was small he replied “Not it’s not small.”

I doubt that he meant just people in wheelchairs but people with disabilities as a whole. However so often people don’t understand how significant invisible & variable conditions are, how much people struggle to walk on crutches or with a stick & the effort, pain & discomfort they go through. This is particularity important when people in the latter have to use a wheelchair to get around, this can often be on occasion when their condition is particularly bad or dependant on the situation. It can also be when they go out because their condition is such that they can’t move quickly, safely or the pain & exhuastion would be too much & can’t simply “hop out” without a great deal of difficulty.

Ironically this occurred just before the show when Sue Marsh had to leave her chair outside then struggle up into the seats because the disability provision wasn’t adequate. People often don’t understand the effort it takes to do things that people take for granted & the amount of time it takes from you to recover which Sue details in her post about her experience about being dropped from the panel & the lack of provision.

Then there was "White Dee". I thought she was either going to blow her top or say her piece, keep quiet & let Katie Hopkins tie herself in knots which she did beautifully.

Annabel Giles pointed out, that if ‘White Dee’ was well & didn’t have depression of course she would be working & Dee agreed. I can’t understand why some people believe this is the “optimum lifestyle choice” whereas in fact they have no choice at all because they are ill.

Question 3: “Would you support or oppose tougher means testing & rules about claiming benefits ?”

Apparently 66% were in support & I wonder greatly how many have any idea how difficult, demeaning & time consuming the whole process is.

Rachel Johnson was a pleasant surprise, coming from the point of not knowing much about her, she commented on the worryingly high percentage of people being sanctioned on JSA & that for people to get help from a foodbank they need a voucher to Edwina Currie to which she replied “only some of them”

Matthew saw this as a great opportunity for Jack Monroe’s opinion. It would have been nice to have heard more of what Jack had to say, unfortunately Edwina was intent on childishly shouting her down.

Jack explained that “You can’t rock up to a food bank & just ask for some free food” but Edwina disagreed. Jack pointed out that she works with the Trussell Trust, the biggest foodbank organisation in UK which in order to get help you need a voucher.

Then for some bizarre reason Edwina said they only run one & when she’s asked if she’s ashamed that people beg for food, she says no.

Jack started to make a reasonable point about the economy & bankers when she’s cut off again by Edwina.

"You come from a rich family." Jack explains again, no she doesn’t. "Yes you do come from a rich family," Edwina says with all the finger pointing of panto.

I had read that Jack had said these accusations had been happening before the show & she said she wanted to say her piece which she is more than entitled to do. She explained that her mum was a nurse, dad was a fireman & that they were hardworking ‘blue collar’ workers.

Edwina throughout Jack trying to speak made countless rapid interruptions, to the point she spoke so quick at times you could barely make out what she had said. It’s clearly obvious when you’re interrupting someone like this you want to stop them from talking, bate them & nothing more.

Edwina continued with countless interuptions about how they both went to grammer school….so what? Many a kid from council estates did also & that it was Jack’s grandfather who was “rich”, that he was a big property owner. By this point Jack, obviously upset, stated he had died with Edwina stating that she knew because she had seen the obituaries

Creepy.

Even more so when you know that she had taken the time before the show to search through Jack’s blog, to find a post she had done & tweet it out before hand. It also shows that before the show she knew she was likely going to bring up her grandfather, to get personal maybe because she didn’t have any defence. She says she admires Jack but her behaviour says anything but.

Also because she wasn’t willing to listen she missed a vital point

Jack is anyone

Jack didn’t come from an abusive family or a family dependent on benefits. The government rhetoric is if you work hard & get on you will be fine & in the unlikely case that you do fall, the system will protect you but it doesn’t and in Jack it proves it. See Jack’s heartfelt post about what she didn’t get to say.

Next they played a clip of “On Benefits & Proud” featuring Emma & Sophie. They explain the programme made them out to be something they’re not, that the system has helped them a lot & no that it wasn’t a comfortable existence.

Yet again, Edwina interrupts “go & get a job” repeating it over & over.

She then got a massive piece of her own medicine, the girl turned around quick as a flash “gimmie a job, innit” repeating it over & over. It reminded me of some Catherine Tate sketch that I couldn’t help but be pleased to see on this occasion.

Question 4: "Would you support or oppose new immigrants being allowed to claim benefits in the first year in the UK?" 76% oppose

Weirdly there was applause from the audience. Often there has been, in the same way as with benefit claimants a lot of stereotyping & myths surrounding immigration issues which people believe including those on benefits. Often pitted against each other, some benefit claimants believe that the reason that they can’t find a job is due to immigration.

Owen Jones brought up points about bankers, tax avoidance & the stereotyping of immigrants & the good that they have done for this country is often over looked.

I think the issue of immigration needed to be on a separate show (which Channel 5 are apparently going to do) as it felt squeezed on to the end, they didn’t have enough panellists to have a proper debate or the time & like with welfare it is yet another issue that has been a used as scapegoat topic.

The fact that they presented facts at the start of the programme was uplifting, I think it is truly disturbing how many programmes are aired with no reference to the actual facts of matter but instead just help perpetuate myths further.

There wasn’t enough time to address everything in the detail that it needed to be. A 45 minute show can’t undo the countless months of government opinion, tabloid “news” & benefit bashing tv, much more is needed to get to that point. People didn’t understand or want people like Katie Hopkins & Edwina Curie up there but the fact of the matter is it’s exactly people like Katie & Edwina that are helping perpetuate myths further because they either do not care about the people affected or that they don’t understand that things that they are annoyed about are myths or don’t represent the majority. When you put people like Katie & Edwina on a show like this against people that know their facts, they show themselves up to be the narrow minded people that they are….as long as people can speak that is.

Fleetstreetfox’s article on her experience

Owen Jone’s article on his experience

17# Weekend cute, humour & awesome

For everyone that feels this way this week.

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)

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

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 :)

World Arthritis Day

I thought I would write a post as yesterday 12th Oct was World Arthritis Day & I thought I would write a little about what I have & what I experience living with this condition every 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 :)

Go back & do it again! The Conservative party conference

So just in case you haven’t been fortunate enough to escape to a distant land or planet or you haven’t been sticking your fingers in your ears with a blindfold on & have being going ” La la la, I can’t here you” you will be aware that the Conservative party conference finished this week.

There have been announcements & leaked documents & to say their ‘policies’ have been hastenly rushed seems like the understatement of the century. It’s like they were doing their homework last minute on the bus whilst gigging with their friends, planning to pick on the vulnerable kid at break, whilst making sure they snatch any treats from any of the other kids.

So out of the array of topics that came out just before the conference & during.

1.The Mirror - Working for benefits

The conservatives seemed to have discarded the persona a little while ago that we are all in this together, leaning more towards the principle that there are whole groups that are just undeserving.
This seems to extend especially to those claiming jobseekers allowance, that they are content to ‘languish’ on benefits & that no one wants to get a job.

So they have proposed that to get JSA claimants off benefits & into a job & to stop the ‘Something for nothing culture’, claimants will undertake 30hrs a week on a community work scheme on top of searching for a job.

But the real reason for this is to appease the proportion of society that has the belief that it is one big party living on benefits & that the majority have no interest in looking for a job, whereas in fact its the exact opposite.

I can see this hindering people with disabilities who claim jobseekers. Will there be flexibility in the scheme? & how are people going to be available for job interviews as most would be scheduled for between 9-5.

On this blog Where’s the benefit they have highlighted many people that were claiming other benefits, have been pushed on to JSA despite being in no fit state to work may now be forced to undergo unsuitable treatment or risk losing their benefits.

And just in case you want to complain, there are plans to attempt to withdraw from the Europen Convention on Human Rights, with proposals of new anti-union laws.

2. The Telegraph - Human whatsits?

In the Telegraph, it further explains the Government’s reasons from withdrawing from the European Convention on Human Rights. I can understand how the Government & the public don’t want dangerous criminals in the country & they want them removed but my concern would be whilst they’re there, will they withdraw other rights for joe public? As with the possible new anti-union laws.

3. The guardian - Plant what?

So just before the conference Mr Osbourne stated that “He doesn’t want to be at the forefront of tackling climate change”. This seems to be because Osbourne believes that other countries should also contribute their own share towards alleviating the impact of climate change. I agree but instead of continuing to do the responsible thing, it seems to be more along the lines of “Well they’re not picking up their rubbish, so why should we?”

This isn’t even approaching the real issue, that the living wage is too low & the profit made on energy too high. Personally I would find it more logical to negotiate fairer energy prices but I have the sneaking suspicion that this wouldn’t be as ‘profitable’ for certain members of society.

But on an important point we need to do what we can to be more responsible with the energy we use & the way we provide it. The Earth does go through natural cycles of climate change, it has done through out its history but we are accelerating this one significantly & we must modify our behavior to be able to leave the planet to further generations for them to appreciate it & not to have a harsher existence brought on through our actions.

4. The Daily Mail - there are no words

So I read this……

There has been a green paper leaked that has set out a “Thermal Reduction Initiative” which would be a 9% duty set on champagne sold in public places. According to the paper, chilled champagne adds on average an additional 0.5% to a bar’s carbon footprint. (& no I did not check this one!! but their stats have been awful so don’t take it on face value)

This IS apparently being pushed as an environmental initiative even though it won’t include Prosecco or Cava even though these also are best served chilled.

My brain further couldn’t believe what it was reading when apparently the Lib Dems had taken the energy to lobby to exempt Pomagne & Babycham!

Now whilst making sure to wear my most serious face, this isn’t an environmental measure as it would include every chilled wine & such, this is just for publicity because of what happened with the pastry tax. I would love to know why the Lib Dems put in all that effort to get Pomagne & Babycham exempt, I would assume that its either because it aided the Lib Dems cause in some way or someone has a real liken for it!

When reading these types of stories, you cant help but think that if they put this much effort into this, why aren’t significant policy changes that affect vulnerable people being thoroughly tested to ensure the smallest amount of people fall through the cracks, unfortunately it probably just comes down to profit.

5. The Guardian - Why aren’t YOU celebrating suffering?

This I find disgusting. Leaked documents seem to show that IDS was trying to find a way of making it even more difficult for sick & disabled people to claim benefits. He was also trying to see if he could put in place additional secondary legislation without the need to go through Parliament to give Jobcentres more powers to sanction people.

The article also goes on to explain how the DWP has had its ‘celebration’ week of new tougher sanctions indefinitely suspended.

I find this both alarming & disturbing that they were going to ‘celebrate’ cutting peoples money. I also find it disturbing that he was trying to circumvent Parliament.

It seems that as long as the people that could carry some of the burden don’t, the vulnerable will continue to carry much more of a disproportional share.

So many different benefits & services have been affected. With it being falsely implied that something is the majority, like most claimants are content languishing on benefits & that they get payed exorbitant amounts of money, whereas instead its a very small minority.

I just wish more than anything else that people wouldn’t read or watch something & take it on face value. The spread of inaccurate figures & facts just breeds ignorance.

I have seen & heard so many discussions & comments that include “I know someone who knows someone thats a cheat” or ” There’s someone in my street that’s perfectly capable of working” & this frustrates the disabled community immensely.

Because more often than not they don’t, often it is a misunderstanding or lack of understanding of the individuals disability or entitlement. You don’t know what goes on when they step through their door, taking painkillers, resting, vomiting & such.

It also doesn’t help with the propaganda fed by certain areas of society making people believe that benefits are too high, whereas in fact wages are too low.

Just remember, to get the complete picture you must read as much as you can from as many sources as you can. Once you block your mind to the possibility that you are wrong, you will never learn anything new.

And to finish this post (thank god conferences aren’t every week, this took many breaks & many days) the Conservatives have been doing a #sharethefacts about how their existing policies have been & their new polices will help people but through out the conference, the only #sharethefact tag i could find appropriate to sum up the conference was this……….