Lupus (SLE), The Spoon Theory and Assistance Dogs

Pre pickup 2 weeks 3 days old


If you're looking for information on whether you can have a service/assistance dog with lupus please read my more recent post here.


So, until this post I haven't actually said what condition I have. Suddenly today I thought it was about time - and past it. I don't know why I have been cagey about mentioning it. I guess I still have issues accepting what has happened to me over the last several years. However, I thought it was kind of silly having a blog all about getting an assistance dog (hopefully, cross your fingers for me) and being unwell and all, and just keeping the manner of unwellness to myself. Especially when I can use this blog to educate, rather than just hide away. Many people don't know what Lupus is, and even when they do, they don't know how amazingly under researched it is, and that only now are we in the first trials of the first new Lupus medication since the 1950s.

So yes, I have lupus, otherwise known a Systemic lupus erythematosus. Or at least, they are like 99% sure. Because it can be a very difficult condition to diagnose - some people can wait 10 years for a confirmation of diagnosis. My diagnosis has firmed up in the last year or so. Systemic lupus is a systemic (in other words, it can effect the entire body) autoimmune condition, where your own immune system can attack anything it jolly well pleases, pretty much. In me it is characterised by joint pain, muscle pain, fever, rash, at times extreme fatigue, sweats and nausea. Well, those are the main symptoms, I could go on all day really :P . In addition I have a couple of bad side effects from medication I take - immune suppression (I get sick easily, eg I got very very sick with swine flu) and dysphasia (I often cannot find the words I want and feel like I have dementia, sometimes misspell obvious words).

An assistance/service dog forum I am a member of linked "The Spoon Theory" (pdf) by Christine Miserandino, someone who has lupus whose article has had a great deal of impact upon many people. I highly recommend you read it, not only is it a great analogy for anyone with a disability, but it gives you a very very accurate idea of what it is like to live a day in my life. A lot of people in disability circles have read the spoon theory these days, and you hear people refer to 'saving my spoons' etc. It hit me quite hard in that it was someone with lupus who had written it, but it also helped me to know that there was someone who day-to-day was going through *exactly* the same balancing act I was. So thank you Christine, wherever you are out there in the world. I am pretty poor with saving and balancing spoons still, I give into people - and myself - too easily, but more importantly, I think having an assistance dog around would give me an extra several spoons per day. As someone with a very limited spoon supply, that is something I very very much need!! So now I have mystified you completely with my talk of spoons - GO BACK AND READ IT! :D