I have so many questions, so many things I'd like to know about this disease before my life is over.
The science is so slow, so underfunded and/or non existent that sometimes I wonder if I'll ever know what's really caused me to be so ill for so many years.
I remember the first few years when I switched from seeking answers from traditional medicine and started looking for answers from naturalpathic and wholistic practitioners. A couple years later I'd tried a plethora of supplements and vitamins and techniques and yet I remained just as sick. Not only that, but I was left feeling like I must have done something wrong given all this stuff wasn't working.
These days I try very little at all - very few treatments that is. What I do, is attempt to eek out a life as best I can despite the illness. And I am pretty sure I'm not quite as sick as I was the first 10 years. Having been ill 16 years either that's because I just don't try some of the things I did the first few years (exercise regimes, full time or physical work) and so I'm crashed less, or perhaps there's been subtle improvement.
The thing is, I really think if there were treatments out there that had significant impacts, I'd know about them. I keep up to date with the little bits of science that are happening. Occasionally you hear rumours of something 'working' and then it doesn't work for everyone, or the impacts are short-lived, or the treatment has side effects, or I wouldn't have access to it anyways.
So while I've given up hope that some panacea will be discovered and available in the next 10 years, what I'd really like to know is what is causing this illness? What in my body isn't working? Is it some kind of low grade insidious virus? I mean when I first got ill they said it was a virus than after a year they said it couldn't still be mono despite that fact that my symptoms hadn't changed much (fever, fatigue, PEM, lymph nodes, sore throat, dizziness, weakness, twitches and tremors) - there were more of them and I was even sicker.
I've had a decent summer overall health wise, but the last week has been pretty bad. Yesterday after a lot of rest the day before, I had a good day. I did way way too much, trying to fit in some summer stuff that I haven't been able to do all summer because I've been working (teaching online). For one, there's a little piece of wall in my entry way that had flooring on it. It was so ugly. I pulled the flooring off about 6 mo ago and was left with painted wood, but it had glue patches all over it. Every time I've tried to scrape the glue my arms have felt like silly putty and I've had to quit.
Yesterday, after months, I took another whack at it. I got a fair bit of glue off and pushed til my arms weren't even strong enough to hold up the scraper. And I mean literally, I couldn't even lift my arms. Then the violent muscle twitching and internal tremor/buzzing started - this lasted hours. Today I'm sore and quite weak. I wish people who were acquainted with me could spend one day in this whacked out failed body and actually experience all these symptoms and effects of effort, even minor effort.
Obviously there's some neurological and/or metabolic failure going on. And yet despite my tiny limited suffering life "I look so good". When I'm collapsed in bed on the couch, when I can barely stand for the weakness in my legs and lightheadedness, or when I fail to attend one of the few things I'm part of, it's no wonder people think I'm psychologically weak or an exaggerator.
Hello Upnorth,
ReplyDeleteI forgot to leave my name after my long comment from one of your recent posts. I’m the one who has M.E., POTS, small fiber neuropathy, Multiple Chemical Sensitivity, and Rosacea. My name is Crystal.
Are you feeling any better now since your recent crash?
I am still trying pharmaceuticals in hopes they will help me some. I am tired of being in bed in agony (which you get and live through daily). Maybe because I’m only at the 9 year mark I haven’t learned my lesson yet? My newest medicine I’m trying to wean onto is Wellbutrin. I finally caved into trying another antidepressant, sigh. It’s supposed to be a “energizing” one, yeah right. But I keep trying. I’m going to be a grandma in December and all I want to do is go there for the birth and help take care of the twins. So I’m desperate. However after this one I may give up for awhile. My primary seems to get irritated with me that I say I cannot tolerate the medications I try. I get they have side effects but thats all I get is side effects with no benefits. I already have enough problems, why add to them?
I am hopeful with Ron Davis, Stanford University and the different types of research they are doing in regards to ME/CFS. I know they only got a aggregate of 10 million and that’s just a drop in the bucket when it comes to research but I will be carry the hopeful torch for us both for awhile. :) I am going to watch the Community Symposium on the Molecular Basis of ME/CFS at Stanford University on September 29th. Will you be watching it as well?
I went on a 3 week vacation a couple months back and after the 3rd day I started having tremors and muscle contractions (which is exhausting) and I have never had them before. We were with a tour group and I couldn’t stop to rest and my body couldn’t take me “pushing through” continually. There happened to be a family practice doctor in the group and she had me take 1,000 mg of Paracetamol (she was from London, we don’t have that here in the States but I guess it’s similar to Tylenol) and it stopped my tremors and muscle contractions! During the day I had to take it every 4 hours or they would come back. (You cannot have more than 4,000mg in a day or 1,000mg at a time or you will hurt your liver or if you have liver problems you shouldn’t take Paracetamol. I am not a doctor so please don’t try this without asking your doctor if you are wanting to try it). At night resting in bed I was fine. I just thought I would let you know. Who knows maybe it’s one of those things that only helps me? This disease is odd.
Hope you don’t mind my rather long comments. :)
Crystal