Post Exertional

I think what always surprises me the most is how I think I am well enough to do something, then I go to do it and I can't, or it's insanely hard. Anything from small things like hanging up a pile of clothing to larger things like cleaning off my car.

Today, I really thought I was well enough to go out there and clean off my car from the snow. I really believed I was okay enough to do it. I wasn't. My arms were so weak, I could barely move the snow at all. I had to rest every minute. And I got lightheaded, like I had to sit down. It was bad. I still pushed it and cleaned the car off and the maint people who work here used a snowblower and a plow around it, so I can take the car out if I want. However, I've now made myself so sick that I can't go out. So, it was almost pointless, depending on how long the PEM lasts this time.

I'm really flaring tonight. It could last awhile, I never know. We'll see how I am tomorrow. It's not supposed to snow here again until the twentieth. Hopefully. So I have awhile to get out to the store again.

Fever, dizzy, headache, fatigued, pain all over. Totally dying.

I don't know how much longer I'll be able to do these things. The truth is, I need someone to help me. But I don't get anyone in because they all steal. My family had horrible experiences with that. My grandmother and my mother had things stolen from them. And my aunt had terrible experiences all last year with that. I am just not up to being stolen from. I've been through too much, and even though I don't have alot of things, some of them are sentimental and I don't want to lose them right now. So, I'm struggling horribly all by myself. No one has been helping me with anything. And it's really hard to do this stuff alone. I'm just not well.

Today was a massive thing. But I get this sick just doing regular stuff. I actually have to rest while hanging up clothing or folding laundry. Like I have to stop after a few minutes and rest up in between doing it. It happens if I just want to freshen my cat's food and litter. Like I'll wash her water dish and put fresh water out, put fresh cat food out, then I have to rest before I can change the litter box.

Everything is always I have to sit awhile, I have to rest. I have to lay down. No matter what I want to do, I start stuff and a few minutes later, it's I have to rest. I'm only forty, you'd think I was a hundred and ten. And the sad thing is, there are plenty of old people with a hundred times my energy.

Comments

Carrigon,
your so not alone, i can relate to everything you wrote? like you i always seem to think i can do stuff & then i make myself really sick. i used to be a go getter, multitasker. i never stopped.i sure miss those days.
Unfortunately, im married to a man who dosent think im sick, and dosent do anything to help me. I sure hope this XMRV thing pans out, maybe we will have a chance at a life, whats left of it.
ooh yea, i have aunts that are in thier 60's and 70's that run circles around me.it dosen't make much sense does it.
Takeit easy, especially in this bad weather! it makes things so much worse!
{{Hugs}} Kat
 
This is what really kills me. I am a workaholic by nature. And I was one of the most reliable people ever, and the one you would want in an emergency. Now, I can't do anything. I'm totally benched. I can't volunteer for anything because I'm no longer reliable and too sick. Can't work, can't keep up a friendship. Just plain stuck.

I'm sorry your husband doesn't understand. I couldn't stay with someone who didn't.

We have hope with XMRV and with the Chinese outbreak. If they push for something, it will benefit us.
 
YES! same here the volunteering thing Kills me also. about 5 years ago i so wanted to go with habitat for humanity to build houses.but i knew i couldnt do it, and also what hit me in the gut was i signed up to be a marrow donor after my brother in law had lymphoma.
aout 6 months ago i got an update from them, then i realized.... i can't even give someone my Bone marrow if i was a match!!!
People don't understand how much this disease takes away from us! it's not just Pain, or i don't feel good! it takes away a little chunk of everything. as far as the hubby goes, im at the point of not caring anymore. i can go it alone, as long as i have Insurance,lol.
i know it sounds harsh,, but after 25 Yrs 2 children, and Taking care of all the crap he just had/has to have. he owes me at least that! so when it gets bad, i just go away from him. even i it's only in the other room:)
Take careof yourself & dont go playing in the snow!
 
About two years ago, I volunteered at a senior center, just some mild secretarial stuff. It was only for about two hours three days a week. Well, I got sicker and sicker and finally by the third week, I collapsed on my front lawn and hairline fractured my leg in two places. Couldn't walk for four months. And that ended any further idea of my volunteering anywhere. I loved being there at the senior center. Just being out with people, doing something normal. I loved it, mentally. But physically, I wasn't capable of doing it. The phone work nearly killed me. I'm sound sensitive and the voices in my ear with the phone were so painful that I was getting mean on the phone from it. And sitting at a computer, which was different from what I do at home, I was getting bad leg cramps. Like at home, I can be in bed with the pc or on the couch, but when you are at a place you are in a hard chair sitting up. I was just dying. I wish I could go back, just to be out and doing normal stuff, but it was too hard on me physically.

I don't think we belong giving blood. We probably never did.

Here's another thing I don't do because of this disease. I don't enter contests anymore. It's so crazy, but it's like, well, what if I win and I can't go where it is. So I no longer bother to enter. My luck, I'd win a trip to the islands and not be able to go and then I'd be even sadder.
 
Hey there...I hear you too. I have OI and this DD stops me in my tracks with most everything. I think, oh, I can go out. But I have to be taken and I have to stay quiet and I cannt engage and when I get home and the nest day etc. sick with PEM. How do you explain it to anyone, how can they understand...oh, you look ok and yet...I sit there, most of the time in a haze, looking out through strained eyes and pretending that I am ok. Mostly I stay home, stay quiet, go outside in my wheelchair and stare at the trees and try to remember what I used to do in the world. Arghhhhhhh, I hate this DD. Think if I ever even try to volunteer anywhere, it would have to be for a small library where it is totally quiet and all I do is put books on shelves I can reach...LOL
Hang in there, hopefully we will be rescued someday...JJ
 
JustJack, it will end one day, at some point. Our curse seems to be looking well, doesn't it? Blessing and a curse. Who wants to look sick.
 

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