The Cruelest Days

The cruelest days of all for me seem to be the ultra rare good days like I had yesterday.

Yesterday, I wasn't lightheaded, I wasn't weak, dizzy, fevered, nauseated, not even in much pain. Some stiffness, but not enough to be bad. And the light wasn't bothering my eyes, and I was able to go out and drive myself to the store and have the radio on in the car because the sound wasn't killing me for once.

So I was driving and it just felt so good. And I was looking at all the people going to work, and I was like, why can't every day be like this? Why? Why do I have to be boxed in a living coffin all the time? I want a chance to have a real career and work and live in this world. Why am I not allowed to have that? A chance to be successful and a chance to have a real family of my very own. Why can't i have that? I'm not asking for the world and I'm not asking for a million dollars, I just want every day to feel pretty healthy. I want to be able to do real things in life again. It's just so not fair.

I was even able to walk around the foodstore without feeling like I was going to passout or having too much sensory overload. There was some scent sensitivity, but not as bad or worse than usual.

So I came home, mostly because I was out of money. If I had some real money, I definitely would have driven further.

And I still wasn't dead when I got home, which usually I am. So I was able to do some work on the computer and call someone on the phone and it was like this amazing nearly normal day.

Of course, it didn't last. And I started to get queasy. And the CFIDS stomach went back to flaring up and today, I am right back to feeling like a truck ran over me. I'm fatigued and in pain and nauseated and basically just want to die.

I have no idea what causes the very rare times of having a really good day. I did not do anything different to cause it. I simply woke up and was better. Just like I simply woke up today and was worse.

But it's so very cruel because 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 away from you again and beat you and make you wish you were dead." It's cruel. And there are no answers as to what triggers a good day. Not eating or drinking anything different. Do not have a clue.

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Carrigon, Do you think if you just stayed home and rested on the good days, that the next day would also be good instead of flaring up again? I'm hoping for something like that for myself but so far haven't really managed it. It seems there is always something getting in the way, like a doctor's appointment, another illness, some medication effect or something. But I keep hoping if I have a good day and am able to just rest during it and get enough sleep that night that maybe each day following will be good too and that eventually I'll improve. Maybe it's a pipe dream but I can't help but hope for that. I'm glad you had a good day but not that you feel bad today. I hope the good days will somehow get more frequent.
 
No, not one thing changes. The next day is the same no matter what you do. That's why when you have an ultra rare good day, you should use it. The payback will still be there the next day, but the severity depends on if you really overdid it. But even if you choose to sit on your butt, the next day you will still be disabled, you will have simply wasted your one good day.

I've tried it all. Aggressive Rest Therapy, Embracing the Illness as a Part of You, been there, done that. Begged, crawled, pleaded, cried, prayed, bargained, swallowed endless herbs and vitamins and amino acids and antibiotics, and painkillers, and raw foods. You name it, I've been there in over twenty years. The disease will not go away, it can't be bargained with, it can't be reasoned with, it has no mercy. I usually think of it as an invisible entity now, something that does seem to have a mind of its very own. And it attaches itself to you and never lets go. Not even on the rare good days. It's still there, maybe it's sleeping a bit, but it's still there.
 
Shoot, I'm sorry it's like that. I had a feeling you'd say that since I knew if resting on a good day would have helped you, you would probably be doing it already. I know you've been sick a long time and that you know your patterns. I do feel better if I don't do any activity and so far my worse times correlate with activity and lack of good sleep and rest, and don't seem to come on randomly (knock on wood), at least at this phase of my illness. But I know we are all different in our symptoms and also tend to go through different phases with the illness. I know I've gone through several just in this past year. You're right, if you're going to feel terrible the next day anyway, might as well enjoy your few good days. I'm glad you had a good day but I'm sorry it's so rare and also that it's only for one day at a time.
 
And today, I'm so flared up, you would never know I had a good day this week. The pain is unreal. This disease just does what it wants.
 
Shoot. Bad day here too. I have a few different health problems acting up all at once. I hope both of our tomorrows our better.
 
Hi Carrigon, around 99 to 2002 I had six or eight such days, typically around six hours though. It convinced me that at least for some ME is about a functional problem that is in very large part reversible. So the good news is this demonstrates that once the underlying problem can be understood and fixed, you are someone who might expect every day to be like that.

One time my brain really switched on and then I lost it after six hours was very surreal, it was like losing my mind.

Bye, Alex

PS Several of the days I had been eating chicken and avocado and salad. I repeated this many many times, but it was not a reliable way to induce it - though I do enjoy chicken and avocado and salad.
 
Maybe it is to some degree reversible. When I took the Ortho Tri Cyclen birth control pills years ago, I experienced a day where the brain fog lifted for a good ten minutes or so, and there was this amazing feeling. I was in a foodstore when it happened. And I remember looking at all the people in there, and I hated them for taking their daily energy for granted. I hated them because for that short period of time, I could feel what was stolen from us. It's so hard to describe, but it was like a veil was lifted from me and for a very brief time, I felt normal. It didn't last, though. But during that month, my first month on the Ortho, the fibro pain was gone. All the pain in the tender points, gone. I was feeling better. The sad thing is, shortly after that, I was in a car accident where we were hit from behind, and that just destroyed all progress and made me worse and I was never to know if I had not had that happen, and stayed on those pills, would I have just gotten better and better. We'll never know. The pills ended up making me worse in the end, my body seemed to reject them after a time. But I still believe after going through that, there is a hormonal connection with this disease. There have been way too many cases of women saying that when they got pregnant, the disease went into remission during the pregnancy, but as soon as they had the kid, they went right back to being sick. And I've seen it with the Ortho. There's something going on with the hormones. And that could explain the rare good days. Some imbalance gets temporarily corrected. And they never do studies on this, and they should.
 
Hi, sorry to hear that your ME isnt of the type that even if you get on top of things with a good day, that even if you didnt do more then usual that day that the next day you may be back to how you were.

That would be bothersome and like being teased by it with some thrown in better days.

The ME in my own case is most of the time predictable, very related to how much Ive been doing or havent been doing. In a way I guess Im lucky there as it leaves me knowing basically what I can expect with not many surprises.
 
Dear Carrigon
It is like reading my story. I cannot explain it. Made charts, kept diaries, medicine checks. No explanation.I have probably such a day once every 2/3 months.

i would like to receive your story, but I do not know how to send to my email address.
I would like to let some people reed it. The non believers. So that they perhaps can understand from you.
Am I allowed to give my emails address here?
best regards
Josephine
 

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