The Good Days and the Bad Days

Yesterday, I was better. I wasn't lightheaded for once and I drove to the store. It was sunny out, too hot, but beautiful. And I actually enjoyed driving. The only thing that was really bugging me was the Lyme arthritis. Other than that, I didn't feel too bad. And I was pretty much okay in the store, too.

The whole day made me wish I could keep the car. I know I can't afford it. If something goes wrong with it, I cannot afford to fix it. And the mechanic already told me he wants alot of money to pass it in the Winter. But I feel like I'm too young to give up driving. I'm only forty. And on good days, I like it. I don't know what will happen yet with that. I have to be able to sit, so public busing is out. I can't be at a bus stop with no chair, and I can't fight with scary city people to be allowed to sit down when I don't look sick. I have to see if I can get the disabled curb to curb busing. But my honest wish is, I want to keep the car. On good days, I can drive, even if those good days are rare. I don't want to give it up. And it's also my last link to a normal life. I don't want that taken away like everything else has been from this disease.

So when I came home yesterday, I had the usual rigor mortis stiffening up all over, tons of pain. Ended up taking my pain med, which only helps to a degree. It doesn't work on stiffness.

And now, this morning, BAD day. As good as I felt yesterday, I am that bad today. Feel like I didn't sleep. Pain all over. Light sensitivity. I'm really, really not doing well today. So, today is going to be alot of resting. The pain and fatigue are phenomenal. I'm just dying. Can't go anywhere, can't do anything.

I'm just so tired of these ups and downs. You get a fairly good day, and you think, OMG, maybe I'm getting better. Maybe it's going into remission. And then the next day, you are so sick, you feel like you are literally dying, and you wonder how much time you have left to live. And no one believes you that it is that bad. That you actually have that feeling that you are going to die.

It's a really cruel disease. It's like someone is saying, this is what you would be like if you were almost well, but guess what, tomorrow I'm going to take it all away again and beat you up very badly. And this torture just goes on and on year after year, and it never ends.

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Hang in there Carrigon, maybe this IS the year it's going to end! Hopefully now, there will be an all out push to get us a treatment to make up for what they've unneccesarily let us live with for so long!
 
I know exactly how you feel, I think. The inconsistency is perhaps the most maddening part of this disease.

But (as my name indicates) I really do think the tide is starting to turn. Hang in there. Chronic illness will be for the 21st century what infectious illness was for the 20th. Big changes are coming.
 
I totally know what you mean, but honestly at this point, I would almost be happy with the ups and downs, bc I don't seem to get anymore "good" days.
 
The thing is, on a good day you have to guard that flame of heath returning. It is so easy to blow it (out) by trying to do all the things you can't possibly do when you are worse.

I sold my car a couple of years ago, because i no longer could trust my ability to drive. I get vertigo sooo bad. Luckily in my town, the buses are designed to take wheelchairs. If that is not the case in your town, Carrigon, how's about putting the scrap value of your car towards some crutches, or other visual signal of how much you need that seat?

Just a thought...
 
Actually, Clouty, one doesn't necessarily need crutches (although I thought once, it would be good to have special crutches, plaster casts or slings for ANY sufferers of an invisible illness).

Most of the time these days, I am a relatively active FM sufferer - going for slow, but longer walks, shopping etc.

But deep steps on/off public transport are hard with a painful hip, so I side step (very slowly) getting on/off. I always have to put my left leg first stepping UP, and drop my right leg first (going DOWN a deep step).

I DO find that this slowness getting on a bus or tram, sometimes scores me a seat in a crowd.

Passengers don't like to wait in queues to get on public transport, but generally, if they see you having trouble getting on, they show a lot more consideration. And the same if you have a shopping trolley.
 

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