For the past ten years I have been living with numerous symptoms related to chronic illness. I suppose that although getting a diagnosis was - and is - important to me, it is the symptoms that really count. Those are what decide what I can and cannot do. I was diagnosed with fibromyalgia in 2006, though not all my symptoms stem from that or fit into the medical model for that condition. Also listed on my diagnosis list are endometriosis, migraine, pain amplification syndrome, asthma and neurological issues including numbness, tingling and cognitive and speech impairment. Yeah, I know, I sound rotten to the core!
Pain amplification or centralised sensitivity are fairly common in fibromyalgia; I found quite an interesting article on it here pain amplification. Basically for me there are times when even my clothing feels like a sander being moved over my skin, a touch on the arm can feel like a punch. Pain is probably the biggest symptom that I have, but surprisingly it isn't the one that I find most difficult to manage. There are things I can do to limit or manage my pain, such as wearing certain types of clothing or adjusting my (very limited) activity levels.
The symptom I struggle with most is fatigue. There are hundreds, thousands, of articles and pages of information on the subject of fatigue. For me it isn't just exhaustion but also muscular fatigue - I feel as though I have just finished running a marathon with lactic acid surging through my muscles, when in reality I have perhaps done as little as turn over in bed. It isn't always just that, obviously because it is a variable condition sometimes I am a little better and can maybe make it out of bed and into the living room (thank goodness everything is on one level!) There are some rare occasions when I actually make it out of the flat, although that is mostly when I have medical appointments.
Yet last summer I found that when we had a couple of weeks away in Wales I was able to be out of bed almost every day and sit in one position for longer periods of time. I still couldn't walk more than a few metres even with both elbow crutches, but being out of bed that often, that's a big deal for me. Anyway I deteriorated rapidly when I came home again and had a really very bad, very painful winter where I seemed to need injections of additional pain relief on a more regular basis; something I had been trying to avoid. I had a pretty rough time of it and was feeling incredibly fed up come Spring.
We decided that it would be interesting to perhaps spend a little longer in Wales and see whether there was an improvement over a longer period of time than a couple of weeks. I wasn't well enough to go to Wales until the latter half of the year. However when I did go I found that I improved again. Once more I was able to sit for longer periods of time and was able to be out of bed most days. My asthma was far less significant, though I still found that I had quite bad reactions to things as silly-seeming as the smell of clothes washing products, spending a good fortnight having to use the inhaler far more frequently again.
My improvement this time wasn't as much as last time, though that could just be because I've deteriorated further again. I didn't have asthma this time last year, yet this year I have reacted to so many things. The improvement that I did have did last however and I felt much, much better just being able to breathe fresh air.
Back here and I once again deteriorated significantly. In an ideal world I would move to Wales and at least have a little bit of a better quality of life. Although I feel like I have worked hard at trying not to let medical conditions rule my life over the past decade, the reality is that things are getting worse. I have achieved a lot - two degrees, both 2:1, a diploma and graduate level certificate, as well as volunteering (though I haven't been able to do that for around 2 years now). I would love to do a Masters in Children's Literature that I have seen, as I achieved a distinction in that particular module of my latest degree, however just completing that final module was a serious struggle. My tutor kept contacting the University on my behalf trying to find more support for me and more alternative ways of allowing me to study but by the end of the module I was in serious trouble. It was a huge relief in many ways to reach the end of studying.
Right now I don't have anything to focus on, which is something that I think I need. On the other hand I have deteriorated so much that I just don't think I can manage anything else. It is going to be interesting to see how I am over the coming winter and whether I remain at my current state or whether I get worse still. I am crossing my fingers that I stay where I am. I suspect that getting any worse is going to start to impact my mental health as well as my physical health.
