Not the most uplifting title, but it does get to the heart of the matter. Every time my health worsens, I grieve all over again for the things I'm missing. This process becomes less difficult with repetition, similar to a romantic breakup. It's never easy, however, and it's always unexpected.
At the end of 2013 and into early 2014 I was doing better, able to get out regularly. I had hope for the longer term, for the first time in years. Then the bottom fell out. I have so much widespread pain that it threatens to subsume me, and the fatigue has me practically homebound.
The fierce amount of mental energy required to cope with the pain is staggering. Perhaps people without chronic pain don't understand this concept, how many mental resources are marshaled to push the pain below a conscious level. The pain is still there, of course, but not always at the forefront of my thoughts. The more pain, the more energy is required to attempt block it out. The more pain, the less successful this attempt is. On bad days I can't concentrate enough to watch a movie; I was a National Merit Finalist.
This weekend was the commencement of another round of grieving. I thought I was doing ok, that I was just too sick to miss life. Then the longing for meaning, purpose and connection crashed down on me. Maybe this should be filed away in my journal rather than posted here, but I'd like to help others understand even a little.
Coping with autoimmune disease with grace (sometimes), humor (always) and dignity (rarely). Plus knitting and cats!
March 30, 2014
March 22, 2014
There have been some big changes in my life, even more of them. I don't know whether I needed to let it all sink in, or find a way to express myself, but I hadn't feel ready to talk about it until now. I have a new doctor, and we've discovered that my autoimmune disease is a type of seronegative spondyloarthropathy. More specifically, Psoriatic Arthritis seems to fit, a condition where the immune system attacks soft tissues and joints. It's similar to Rheumatoid Arthritis.
My most disabling symptom for years had been pain, but in the last few months fatigue has taken over. This isn't just feeling tired, or being drained by pain. This is a whole new level of fatigue, where merely standing is difficult and my thoughts move like molasses. It has also caused muscle weakness, dizziness, joint pain, and impaired my thoughts and memories. I am rarely able to leave my home except for medical appointments.
I don't know what the future holds. I felt positive a couple months ago when I finally got a diagnosis. Now I just wish I was able to function enough to enjoy life. I'm grateful to have caring friends who I can keep in touch with online. I have loving family. And I'm still able to knit. I've completed a few knitting projects and hope to share them, health permitting.
Posted by Summer at 1:08 AM 4 comments
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