This time last year I wrote a post about how I had been recently diagnosed with Rheumatoid Arthritis. At the time I was feeling lost as having to accept this strange life I had suddenly thrust upon me. I don’t think I was thinking about how I would be in one years time. But I am sure I though I would be on a treatment plan and in some form of remission. What I certainly wouldn’t have expected was to be now battling two primary auto-immune diseases and two secondary conditions. It is the gift that keeps on giving.
I still have a form of inflammatory arthritis, possibly Rheumatoid but now suspected Psoriatic Arthritis. The two conditions are similar enough not to go into explaining them, swollen joints and no end of pain. I was coping with this knowledge when I got slapped in the face with a second diagnosis of Fibromyalgia to explain the extreme fatigue side (many Auto Immune disease overlap with symptoms so diagnosis can be difficult, the fatigue could be part of the inflammatory arthritis but it may be a condition entirely on its own. Hell I could write an entire blog on that subject never mind one post). I describe it as a slap in the face because I was furious at the rheumatologist for giving it me. He didn’t give me the disease of course, so it was a case of shooting the messenger. I’m not so sure why I was so angry about it, mainly because I had enough problems but also because Fibro has so much stigma attached to it. It wasn’t until fairly recently that Fibro was medically proven, it is for the record a neuro-muscular condition. Put simply some chemicals in your brain don’t work quite right causing you to feel constant pain and extreme fatigue. The severity can alter day to day and from person to person. But the thing that is tricky about it is that it is hard to diagnose. Today a test is done which involves scoring pain when a set of points on the body are pressed. Brain scans can also show neurological problems but these tests aren’t done as standard. So you would think with all this medical evidence that would be that. Yet because Fibro was not proven for so long it developed a stigma that it was an ‘imaginary’ condition, that people claiming it were just lazy. Then you get idiot journalists writing this load of old tosh in the Sun:
ÔÇ£My New YearÔÇÖs resolution for 2012 was to become disabled.┬áNothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades ÔÇô fibromyalgia, or M.E.ÔÇØ
ÔÇ£And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.ÔÇØ
ÔÇ£I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.ÔÇØ
If I was ‘a bit peaky’ it would be a relief. I would love to be a bit peaky. Instead I have days where I sleep right through them. I have days where I can only curl up in a ball because I feel like every single bone in my body is being crushed. Because of this illness I was pushed out of a career I had been to university for the last eight years, leaving me with an insane amount of debt that I was told I could easily pay off once I got this job I had worked so hard for. It isn’t fun having to stay at home all day. I actually do not claim benefits but if I did I would bloody well be entitled too, being a tax payer and all. I might like to be fashionable but this for sure is not one I would recommend following! It goes without saying that Liddle is ignorant and a lazy journalist who cannot be bothered to actually research the illnesses he mentions. He is like many other ‘journalists’ looking to stoke a fire and get┬á a bit of attention. Much easier than researching and writing a brilliant piece of journalism. But the point is he, as a journalist for The Sun, wields a lot of power. The power to reenforce stigma about a genuine illness. Many people will take what he says as the truth, they will not bother to go out and research what these diseases really are. It will stay in their minds, that these are ‘made up’ and people who claim to have them are not really ill at all and hey if they are also claiming benefits then they are spongers too. These diseases are not new, but the advances in medical research are, allowing them to be identified and further defined.
Things haven’t really changed all that much for me, I have extremely bad days, yes, but mostly I have OK days which is fine by me. I haven’t responded well to any of the treatments yet. There are more to try and it is a long process but I have no choice to stay hopeful for the next one. Taking so many medications have their own pros and cons. One weird one is that one of the meds I am on seems to be amplifying the condition Sjogrens. The first thing I noticed was how dry my skin was, then my nose and my eyes. All easily eased with lotions and drops. Then my mouth got really dry, it is too hard to explain how that feels. All your teeth hurt, so I have artificial saliva. This is totally gross, it feels like having someone else’s spit sprayed into your mouth, why on earth they didn’t think to make it mint flavour I don’t know! Then I was having a bad day and burst into tears, but no tears came out. Not one drop. I can’t cry any more. Which is strange and a bit funny, but also so very sad.
One good thing I can say has come out of all this is that is has given me more time to pursue working in fashion. It felt right in a way walking away from my old job, it was a weight lifted. I don’t know what the future will bring, we shall see. I’ve always been a big believer in fate.
As a result of the Liddle debacle, sports commentator Mark Robson spoke out, he give a very accurate description of what living with M.E is like (M.E and Fibro are very similar diseases).