Today I want to scream at and shake up and do all sorts of violent things to people.
Before they tell me that I look well, I want them to at least
Ask me how I really am. At six o’clock in the evening I am hanging around my room in my Pajamas not having slept at night, having done nothing all day except perhaps visit a doctor or get some blood tests or some other tests or juggling medications, and am absolutely exhausted and all I get is - you look good!
I have been in the house for the last six months and seventeen days and I look good?
What am I suppose to say – Yes I am feeling better, I am great thanks, nothing wrong with me – when every muscle in my body hurts, my body temperature is just below 100c all the time, I need to stay in air conditioner set at 23c, and need ice bags more often than not? I have ulcers in mouth, sore and dry eyes, and viral or fungal infections compete to enter my system. But never mind, everything is just fine, I look good!
Yes I have pink cheeks – it’s fever and the Lupus malar rash. Yes I am nicely rotund – try a mocktail of steroids, Sertraline, Sodium Valproate and beta-blockers – so will you be.
The option of being fat and alive than thin and dead is not much of an option.
Sure my vocabulary has improved manifolds, if anybody with half a brain had to remember the names of their medications so as to constantly read up to monitor drug interactions, theirs would too.
I have to keep a count of all the pills I have to take everyday, plus two, minus one. Drugs overlap. One painkiller doubles as a mood stabilizer. I am anyway on a different one for the bipolar. Another painkiller that I need to take SOS, which is twice a day, has anti depressant properties, and I am already on an anti depressant. It is also notorious for insomnia yet makes me too drowsy to read or watch TV. Or do anything where I need to use my eye. Beta Blocker would work as yet another depressant, so the choice is to put up with palpitations until the twicking of an anti depressant begins it’s work, when it does and IF.
Please nobody suggest music, because any continuous sound drives me up the wall and hanging upside down from the ceiling. That is Lupus for you. Once I sang before as a soloist in a choir!
Everyday I need to put all this on my frigging needle and knit it. And then I am told – just have a painkiller and come along! I am grateful that they appreciate my company, but it is so not about just the painkiller!
What about the deadly fatigue? What about the sun sensitivity? The fact that I take a one and a half hour round trip to the doctor and I need to be in bed to recover for the next three days? Do I really want to stay at home and not watch a film, or go to meet a friend, or catch a good crafts festival?
The other helpful suggestion is - why don’t I give up my work! And do what? I have had to give up one project after the other, because with each, after a while I got to realise I couldn’t physically cope any more. I was one of those idealists – the 'want to change the world' – kind. I found under-dogs everywhere, in every spectrum of society, and I wanted to look after everybody.
Huh!
I am particularly upset about the last issue because the person who said this I have known for years. We have known each other from much before I was diagnosed, through the times when I’d be sick always and nobody could tell what was up, and as bit by bit, sometimes more than a bit, my world began to shrink. I cannot commit myself to any plans anymore because I have no idea how I may feel, so it is impossible to schedule anything. Even to visit doctors I often need to hold a pill, or double a pill or change the time, whatever. I design. This can be coordinated from the house, people I work with come here, and clients also do when it is necessary. Right now this is what I want to do and can do, even if I am not making much money.
I need to have a life of my own to wake up to.
I DO NOT WANT TO HAVE MY EXISTENCE VALIDATED BY SOMEONE ELSES.
I WANT TO KICK, SCREAM!
OR I WANT TO LOOK SICK!
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