On one of the support groups that I am a part of, a friend - Belle, wanted to know what it feels like to NOT be in a flare i.e. an acute phase of Lupus.
This was my response:
For at least the last twenty-four years I don't remember not having been in a flare. I was correctly diagnosed finally in '99. But from a long time before that I remember symptoms and episodes that indicated Lupus.
From when I was eight, I had to use a topical steroid cream to control the lesions that would appear on my face. None of the doctors consulted connected the problem to the sun at that point.
In the middle seventies I used to be feverish every evening. Three times a week before going to attend Karate classes I'd need to take a Paracetamol. I seemed to have an attack of some ...itis or other all the time.
By the early eighties, I always ached all over and had low-grade fever all the time. While out in the sun I tanned 'beautifully' - never realising that it was all hyper pigmentation and not once connecting that it always appeared with the increase in fever, body ache, giddiness, a throbbing headache and fatigue.
I regret the fact that when I my daughter was an infant I didn't have the energy to play with her, take her to the park. There are many things that I wanted to do for her as a mother, but I never was able to.
Anyway, before the diagnosis I lived in agony for a couple of years. Since then, although the drugs are supposed to have kept the symptoms under control, I have never been symptom free.
Now of course I am in particularly unpleasant flare, and I have no idea when I will come out of it. But, I do not have soft tissue involvement yet (fingers crossed), so I am lucky.
Apart from when the bipolar plays up, my brain also seems to work fine. I do find that my memory is progressively worse, may be that is because I am not making enough effort. I have to deliberately try to register things, and am often muddle headed. It could be the drugs that I am on. I am not going to think that this may be the beginning of some kind of a CNS involvement. I will deal with it if and when it comes to that.
I don't sound optimistic at all, do I? But there ARE many reasons to be positive - friendships that survive in spite, opportunities that a regular life wouldn't have offered - because my body is dysfunctional, my sensory responses are more in focus – my subconscious more receptive than it has ever been.
The fact that I am able to mostly control what I wish do with time is no small blessing.
And because there are physical limitations, I have learnt to accept the limitations of my nature too and so I either deal with them or move on. I no longer think I always have to be on a conquering trip. I approach the rest of the world with the same attitude, so I have much less to complain about than ever.
Am I making any sense?
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