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Sleep, eat, repeat!

Amanda Thorpe


The last two years have been, quite frankly, terrible. 730 days of sleep, eat, repeat.


To recap for you, I was diagnosed with diffuse systemic scleroderma in 2007, heart involvement nearly "took me outta the game" in 2010 (I reckon my foot ulcers begin around then) and I had 3 episodes of cellulitis within a 5 month period, consequently landing in hospital twice, the last time suffering an acute kidney injury and a bout of colitis. Needless to say this isn't a complete list, rather, a summary of the salient points, the magic moments memories are made of.


I know that whether scleroderma actually had flares is disputed by some doctors although there's no doubt that the disease can wax and wane. What the difference is supposed to be I don't know but for my purposes the worsening of my symptoms from 2013 to 2015 will be known henceforth as a flare.

Initially said flare caused tight skin that had slightly softened to tightened again and I now know this to be a red flag announcing the arrival of a flare. My foot ulcers had started before the flare but interestingly they did not heal until it ended. They were literally open for years despite help from everyone including being assessed for skin grafts which were declined. Timing turned out to be the key in their healing, a new dressing introduced at the tail end of the flare did the trick.


During the flare, pain was worse which meant that I had to use a wheelchair constantly, no longer able to shuffle around indoors on a good day, I became wheelchair dependant. I even had to have a stairlift fitted, but then at 46 years of age I was just too old to crawl up the stairs on my knees and take the descent courtesy of my derriere. However necessary the stairlift was, I bristled at tv commercials advertising the device, never seeing anyone tackle the stairs using my crawling/bumping bum technique, only someone in their seventies standing at the foot of the stairs gazing up longingly, shot almost in black and white to emphasise longing and loss. Then, technicolour bright, wearing wooly, patterned jumper, with facile smile revealing mighty white dentures (real teeth are NOT that white), they motored their way upwards. Give me a break!


Fatigue became so bad that of the last two years I spent most of the 730 days in bed asleep. During a four month period I went out of the house socially once. Once! For a time, Ma took over the few domestic chores I did but a cleaner became a better and permanent solution. As well as earning a living, Michael did all shopping and cooking whilst I did absolutely nothing. Even my commitment to the ISN community was reduced to the bare minimum.


Day after day and nothing improved. No change. Sleep, eat, repeat. So long elapsed between washing that I had to diarise it to remember when it happened and so as to know when to do it next. I felt helpless, pointless, living an aimless life that would never have direction again. Many times Michael reminded me that what I felt wasn't necessarily reality. More than once we had the "quality vs quantity" debate, coming down on the side of quality. Every time. Problem was, I felt like I didn't have any!


I felt the terrible pressure of lying in bed while my husband went to work, came home and worked, shopped, cooked and ran the home. He never complained and never added to my burden of guilt. I felt my life had become meaningless, my contribution negligible. I wondered if my illness would ever improve, concluding it would not I assumed that this was it, the end and I wasn't even that bothered.


Strange as it might sound it wasn't all doom and gloom though, it couldn't be, given what my husband and I are like as individuals, together and most importantly, with our faith. I would also like to give credit to the others who helped but alas there aren't any, apart that is, from the scleroderma community. Whether virtually, via these forums and blogs, or through my overall involvement with the ISN, I still had a purpose, however small and I still belonged to a group of people who understood. Even though my reliability was non existent, even though Shelley Ensz and Jo Frowde carried the lionshare of what the three of us do, they never acted in anyway to make me feel insignificant. I did what I could, "hooray!" and what I couldn't do "tomorrow will be better..." Never criticism, never disassociation. At home, Michael and I still met with our scleroderma support group although some meetings were cancelled. Again never criticism or disassociation. I wonder why family is always the exception, why always the pair of concrete slippers making sure you never surface? A close relative actually admitted that they ditched me because being ill made me unreliable and on the occasion I actually made it out, I was"zombie" like. I'll talk about this in more detail in another blog, or maybe on the psychiatrist's couch!


To conclude, the flare is now over and not a moment too soon. I had started to consider it in terms of, the end, my end, game over and I'm not even a glass half empty kinda gal. I am now able to share the demise of two terrible years, here, at the beginning of a new one. Okay, technically, we're nearly halfway through the year but I reckon I wanted to wait awhile and make sure, before putting my head above the parapet and calling time on two terrible years, 730 days of sleep, eat repeat!


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