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.

World Arthritis Day: Arthritis & the extras.

So this is my second time writing a post for World Arthritis Day, an event that I never knew that I would be writing about, as many others would have never have thought they would do either & my first blog post can be found here.

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.

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!