Friday 24th May - LIVING! with Diffuse Systemic Sclerosis

Two down, and four to go!

I'm currently having a course of six cyclophosphamide treatments to subdue my over-active immune system. When I was told that this was what was required, I might have been more apprehensive, if it hadn't been for the calm, matter-of-fact way the consultant presented it to me, and my total ignorance.

I've not been given any specific treatments for this auto-immune condition that crept into my body maybe as many as twenty years ago; diffuse systemic sclerosis. There, it's typed out in hard-edged letters. It was formally diagnosed back in 2001. I had a brief look on the internet, but it filled me with such dismay that I soon stopped doing that. Instead, I decided to focus on my life as it is NOW, rather than worrying about a life that might never come to pass. I trundled to the specialists every year, had regular tests, and was told that the disease is progressing so slowly that no treatment would be necessary.



Lungs look so gory that I thought I'd add a picture of lungfish instead
copied and pasted from wikipedia

The initial effect of the disease is in my lungs, so that I became breathless walking up hills, or slopes, and now gentle inclines. That's not a big deal - I can still walk to the top of the South Downs or the Brecon Beacons. It just takes a long time! I pace myself, walk slowly, pause frequently to admire the view.




this looks prettier too
http://wordplay.hubpages.com/hub/valentine-hearts

Then my heart became affected - but I was lucky enough to have the opportunity to go on a drug trial for pulmonary hypertension for several years. The results have been encouraging, and I have been stable for several years.

Recently, my lung function deteriorated, and I was prey to recurrent chest infections, and so the cyclophosphamide was proposed. And I suddenly found myself taking nine different medicines, seven times a day. Oh Whoa! It is quite hard to think of oneself as basically "well" when you are rattling full of pills and ticking them off a checklist every day.



not this kind of drip
http://en.wikipedia.org/wiki/Stalactite

So, back to this cyclophosphamide business. It's really not too bad. I catch the early train to be at the hospital for 9 am. Blood tests straight away, then wait for a couple of hours for the results. If everything is clear, then a drip for an hour, wait for an hour, and then home again, with a couple of pills to be taken at specific times. Make sure you drink PLENTY - apparently the stuff is very harsh on your bladder and it is important to drink lots. That's it. Oh, one more thing; take a really, really good book that will see you through all the sitting around and waiting.

I arranged for a friend to come up on a later train (she spent a lovely morning at the Victoria and Albert Museum) to accompany me back, as you are advised not to travel on your own in case you "come over all peculiar", but it I didn't feel particularly fragile. As a precaution, I booked myself in for the treatments on days when I can take the next day off, but I haven't actually felt so tired or unwell that I couldn't have done a day's work rather than loll about reading books and watching day-time TV.

The really important thing to me is for me to stay busy, to carry on with my passion for teaching music, with all the movement and singing and activity that it involves. I want to live my life to the full for as long as I can. There may come a time when I can't do as much, and my world closes in around me. Or that time might never come. Who knows? I know that worrying about the future really won't be helpful, and will only spoil the present. 

I did ask the consultant whether I should be "preserving" my health, and being careful not to exert myself. His reply was brief, and to the point. "Use it or lose it". Good. I don't have to cocoon myself in cotton wool, and be conservative about what I do. I'm as active as I want to be, and when I get tired, or run out of breath, then I stop. Until I'm ready to go again!