Living with scleroderma has been interesting lately, to say the least. Expletives, curses, profanities, call them what you will … my week has been full of them, right to the brim! I’ve been so full of nastiness that it has been overflowing from my mouth at any given time.
The final straw was when my husband Max and I were driving home from the supermarket after a lengthy shopping expedition. I try not to go grocery shopping very often, as my lungs and heart have had enough and all my joints ache by the time I’ve been all the way around the supermarket. I prefer to order online and have them delivered. But this week was the exception, as we ran out of almost everything and couldn’t wait for delivery.
A woman pulled in next to Max and me as we were exiting the supermarket entranceway, her unnecessarily large SUV blocking our way for a moment or two. It is best I don’t repeat what I said. I am not proud of the names I called her. As Max stared at me in disbelief, I wondered if demons had taken over me. I was behaving like this for almost a week and secretly loathing myself for it, and now I’d finally let it show to my nearest and dearest.
On arriving home, I actually checked the bedroom mirror. No … I still looked exactly like me. No red horns or fiery pitchfork to be seen.
What I did see, was a face wracked with pain — physical pain. It isn’t hard to spot people who are physically suffering. The furrowed brows, tension-filled faces, and wretched look in their eyes give them away. They move stiffly and wince a lot. Exactly the things I discovered when looking at myself.
I have important tests coming up in another week and to prepare, I have been unable to take one of my pain medications as having it in my system may interfere with the results. I was unprepared for the increase in my pain levels and the resulting additional fatigue coupled with lack of sleep. I should have rested instead of pushing myself. I should have spent days at home instead of trying to cope with normal activity. I should have practiced plenty of loving self-care instead of demonizing myself to the point of self-loathing.
Clearly, it was not OK to behave the way I did. However, condemnation of myself rather than recognizing the real issue is a clear mistake.
Scleroderma pain can be extremely hard going. For me, it usually involves most of the joints, chest tightness with pain, dizziness, and nausea. All this on top of secondary discomforts caused by medications. Some of this can be masked by strong pain relief, but I have learned the hard way that this must be taken regularly and without breaks to be most effective.
I am surprised I didn’t anticipate the complications that going without a portion of my meds would bring. And I am a little cross with myself for not preparing better. A fortnight of extra good self-care was called for, rather than carrying on as normal and thinking I would cope.
At the end of the day, it is a great relief to find that underneath the angry red fiery flame-ball exterior that is pain, I am actually still myself. What a consolation to realize that the real Lucifer here is scleroderma and not me!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.