I have that problem all the time. I am always losing messages before I can get them posted. Sometimes, my mouse strays into the links that are just to the right of the box where you type your message, and it goes off by static, or I bump it. Half the time, my cat jumps onto the keyboard and I have no idea which key she has hit, but the message is gone. Then occassionally I forget you can't leave the page, by the back button, or forward or any link. One of the other moderators composes her messages in Notepad, and pastes them into the message window, so she doesn't lose them while composing. I haven't yet resorted to that, because I like to use the colors and bold, and such.
I remember being in a place like you describe, where it just takes all the energy you have just to stay alive. And I was slipping fast, had all but given up when I finally convinced a Dr to treat my pain. Ever since I've gotten some marginally reasonable pain control (there is still plenty of pain and plenty of room for improvement on the pain control--but I have to play the Drs' game, unfortunately), anyway, since we've partially controlled the pain, I've started to catch back up, but it's been a long slow journey. So I can definitely relate. Especially the cooking. For somewhere between 3 to 5 years, all I could eat was beef, chicken, potatoes, butter, salt and water. PERIOD. No seasoning, no simple herb tea, no juice or soda, no vitamins, those 6 things and that was IT. Of course, no Dr could believe it, they all thought I was a psyche case, and of course, you don't give pain meds to psych cases. It was absolutely a nightmare, so believe me, I understand.
I never got any results from the herbal treatments and vitamins and natural this and that, either, and gave up on it all several years ago. If I could just have all the money back that I spent on that stuff, you know...:-l
"Earthquake" hot flashes???!! lol! Does that mean the earth moves when you get hot, kind of like a volcano?!! No offense, it's just a description I've not heard before. I've been through both the hot flashes and night sweats. I did it "cold", with no hormones or anything, and it's all over for me. And the hot flashes and night sweats were my worst symptoms, night sweats being the worst of the two, and they were just massive sweats. I would wake up completely soaked from head to foot, including nightclothes and all the way through the sheets to the mattress, hair wet even. I'm really glad it's over! Regarding the cream, though, I wonder if you started using it very gradually, whether you might build a little tolerance, so that you can still benefit some by it. Benefit some, if not as much as if you used it all the time. Like maybe use just a tiny amount once per week for a month. Then twice a week for a month, then 3 times, then maybe start using a little more but still 3 times per week, etc. So maybe you can identify an amount that you can use safely, that might not be a full effect, but at least a little bit. Who knows, maybe starting it just really slowly, you might eventually be able to use a full dose. I don't know, I'm not an expert, but it's just a thought.
The floral wreath-making sounds really neat. Do you mean using dried plants and flowers and stuff, or do you make "live" wreaths? I think creativity is my most powerful healing tool, meaning that I make the most progress on emotional or psychological issues when I approach it creatively. I've had some art therapy and some music therapy, and I write on my own, without special therapy. I think that it is a means of resolving the issues on a level not possible by simply talking, a level from which maybe the problems started in the first place. (if that makes any sense) Which is not to say I do creative projects very often!
You mentioned feeling stressed out about being on call for your son 24/7. And I'm wondering if you've ever heard of respite care? There are several different organizations that I've heard of, that offer respite care. In case you haven't heard of it, it means you would be able to leave your son in the care of licensed and insured professonals for some period of time--a weekend or a week. The whole idea is to relieve caregivers of that 24/7 responsibility. Most people that use these services are either parents of ill or disabled children, or children of aged, ill or disabled parents. Anyway, if you might be interested, I would suggest contacting your local United Way agency. They usually maintain awesome lists of agencies and other resources for people in need(any kind of need). And most of them have websites with fully searchable databases, so you could look up the agency or group or individual that provides this service, yourself.
Don't worry about scaring me away, because I've had as many problems as you. I've scared people away myself. I don't think anyone who has CFS would be scared away. We all know how it is. Well, I've probably gone on for long enough. Hope you're doing well as possible. Take care.
brynn, Moderator for Chronic Pain forum
and Chronic Fatigue Syndrome forum