What is actually wrong with me (a non-sewing post)

I guess we're all all too aware these days of how many scammers there are on the internet, lying about fake illnesses that they have out of some desire to feel special or to get money or something. So, I feel like I should say first and up front that I didn't write this post to scrounge for sympathy or anything else. I've never really tried to hide the fact of my illness on this blog, and obviously (as seen yesterday) I do whine about the impact of my illness quite regularly, but in general I don't want this to become a blog about being sick. Recently, however, I've had a couple of questions about why I am stuck at home/unable to work/talk about being sick so much, and so just out of the knowledge that it's irritating to be cryptic all the time, here is a brief explanation. I imagine most people will just skip the rest of the post, and that's perfectly OK with me.

Over the last few years I've been struggling with an illness that I came to realize I had had for a while. From 2012 -- oddly enough, from right about the same time I took up sewing -- onward it escalated significantly but it wasn't correctly diagnosed until after I ended up in hospital a couple of times in mid-to-late 2013. I bounced around a lot of different specialists until finally I was told that I have a very rare genetic condition of a type known as an auto-inflammatory disease. The type I have (not listed on that website) causes acute pain by causing chronic inflammation of my major internal organs (heart, lungs, liver, stomach). Sadly, I don't respond to the main drug that works for many people in my situation, and I have been trapped in bureaucratic wrangling with the NHS for over eighteen months now trying to access an alternative (expensive) treatment instead, which may or may not help if I should ever be given permission to try it. This situation is of course very frustrating.

In the meantime, I take steroids, which prevents about 90-95% of the inflammation. Like most people I get heavy duty side effects to go along with my heavy duty steroid dose. Over the last two years or so I've mainly learned to ride the line between how much pain I am able to tolerate and how many of the steroid side effects I am able to tolerate. When I have bad weeks, it tends to be because one or other of these (pain or side effects) slipped past the toleration point. In general, I've found the best way to keep myself stable is not to try to do too much. Sadly, "avoiding doing too much" has turned out to include avoiding doing almost everything I previously took for granted about leading a normal life. I am very very fortunate that my family have been able to provide endless emotional, financial and practical support to help get me through this period of my life.

To circle back round to my actual sewing: as I've mentioned before, the biggest effect has been that my life is pretty limited -- I don't leave the house much because too much exertion triggers the inflammation -- and so the range of things I sew is a bit limited. The most aggravating thing about my illness from a sewing perspective is the constant weight fluctuations. Many people gain very significant amounts of weight when they are on steroids at my dose level for as long as I have been on them. I have been fortunate to avoid that, although "fortunate" is a funny way to put it because it's partly because I feel so violently ill most days that I don't even want to look at food. However, my weight has bounced up and down quite a lot, and unfortunately when you gain weight on steroids it all goes on (a) your abdomen ("steroid belly"); (b) your upper back ("buffalo hump") and (c) your face and chin ("moon face" or chipmunk face) and then it STICKS THERE, even if you lose weight again! I can't say any of this makes me happy, especially the chipmunk face thing, but there's nothing I can do so I am just... I don't know, working on cultivating something like a zen attitude about it all?

I guess that's my de facto way of dealing with the whole thing, really. Mostly, I just try to get on with whatever facsimile of my life I can have right now. Sewing has been a great plus in my life. When I am well enough to be up and about around my house, it gives me something to do. I'm able to buy almost everything I need on the internet, so the fact that I can't go out to the shops doesn't really matter. When I am less well, it's something think about in the many empty hours that I would otherwise spend staring at the walls. From the outside, I can see it probably looks a little obsessive at times, but in the grand scheme of things I'd rather have a few strangers on the internet think I'm, for example, weirdly over-invested in wardrobe planning than give up on a major source of amusement.