I've been quite crashed since Saturday.
Very very fluy and weak. I've been needing at least an hour of rest after a bath. I had to sit on the floor and take breaks while folding laundry - that kind of crashed.
The OI (Orthostatic Intolerance) has been pretty bad too this week with frequent dizzy spells and multiple blackouts and near faints.
The Valtrex is causing some mild dizziness and some mild headaches.
Lots of bed time - and bed time without reading and computer....just plain rest. Probably 90% of my day horizontal presently.
I'm frustrated with being sick and just feeling so ill.
I caused this crash (I'm pretty sure). Last Saturday I went in the back yard where we (meaning my housemates) had done some major construction on the house last summer. There's all sorts of cement chunks that need to go to the dump and it's "free dump" week. On top of it all, one of my house-mates just found out he has a heart condition. So I thought I'd help by just separating a few of the smaller cement pieces from the dirt pile. Really they were small pieces, it was nothing too dramatic.
After doing a few I started getting the dizzys. I would lean down to get one and just black out so I figured I should stop.
If you have M.E you're probably thinking "Why would anyone with M.E. do such a thing?" "What was she expecting?".....sigh....I guess I just wanted to DO SOMETHING. Something to help and something even a little physical. I'm sick of living in the box.
My specialist uses the analogy of M.E. being like living in a glass box. As long as you live in the little glass box (the walls are your limits), you can do OK and avoid most crashes. However, if you try to push past your limits, breaking the walls of your box, you end up getting hurt. Well sometimes I guess I just want to smash the walls of my box all together.
Yes, smashing the walls of the glass box certainly allows one to temporarily feel a sense of normality, however it's usually a kick in the pants in the end. But who could blame you? It's tempting. It's life. It stares you in the face everyday and beckons you to participate. And I don't know about you, but my brain's concept of what it can and cannot do is entirely different than what my body allows me to do. And so we break the glass and then we pay. It's an abusive give/take. We may feel well enough to do something physical that in the past wouldn't probably have even been considered physical, but still we do it and we feel mentally good about it; perhaps even physically good about it for that moment. We feel as if we've made progress. We may feel as if we're approaching the normal line once again or at least managing to live within the limits of this illness and still participate sans repercussions. As if proper pacing can indeed include a bit of physical exertion. And then BAM, post-exertional payback begins and we feel let down; sad; frustrated and dare I say fooled & abused by this mysterious disease we try so mightily to manage. This disease is mentally abusive to manage, as the rules seem to change, while proactive correlations appear near impossible to definitively find.
ReplyDeleteI hate this illness. I hate it for me, I hate it for you and I hate if for anyone and everyone who has to weather the uncertainty of who to see for it and what to do for it. I never use the word hate. Ever. I hate this disease more than my words could ever, ever express. It stole the life I used to know and manipulates the limits of the life I'm trying to live.
Take it easy and please know you're not alone. We're out here and we get it. Maybe up your salt intake for the next few days to keep the OI better in line?
Hang in there,
jenji
Hi upnorth
ReplyDeleteI'm soooo sorry for how bad you are feeling. I did think about why you would do that but then I had to remind myself that my personal assistant gets on me all the time because I do the same thing. You just want to feel like your are contributing somehow. That there is SOMETHING you can do.
I have been doing a lot of research over the past year on ME and I'm learning that everytime we do this, it damages our cns and other areas.
That is why I am doing the "Shield 4ME" fundraiser because it was suggested in my reading that you take a week and do nothing. Don't use your eyes, ears, or voice.
Of course for me to really do that I need a goal to focus on so I thought why not "Sheild 4ME" (fundraiser). Maybe you could do it with me?
Anyway, the idea is that if you improve even a tiny bit, you know you are overdoing it and you need to back up and start over.
I know that this is part of my problem because I have always been told to push and crash and that that was normal. Plus, I was told not to rest EVER during the day. So relearning how to do this has been really hard.
I do hope you feel better soon my friend. This illness is so awful. I laid here today doing absolutely nothing (except listening to the very loud band outside and putting in earplugs after that) trying to see the positive of lying here and resting.
Restorative rest is what it is called but I wish we could somehow restore our lost time, ability, fun, etc.
Despite that, learning that I am doing serious damage to me cns really made me stop and rethink all of this ME stuff and how I am approaching it.
Sending you lots of love, prayers and hugs. Hang in there. You are NOT alone in this.
Sorry for my rumbling. Cognitively I am really struggling today. I proofed this three times but no gaurantees.
Bummer! I guess at least you know why you have crashed so you also know that with some proper rest you will get through it. I totally understand the 'I just want to DO SOMETHING' thing. Once in a while you just have to eve if you know you will pay for it ... otherwise you go crazy!! Try to be patient and let your body recover. xo
ReplyDeleteSorry to hear you have experiencing another bad period : (
ReplyDeleteThe glass box analogy is a great one, AND so true. Every time I go outside my comfort zone I end up paying for it. It's very frustrating indeed.
I hope you gain a bit of strength soon xx
This analogy is such a good one and describes our lives so well. I used to say I lived in a bird cage...I could see through the bars and once in awhile the cage door would open and I could soar! Still, I would have to return to the bird cage to live...never fully experiencing freedom. Sending good thoughts and prayers your way...
ReplyDeleteWell Lee Lee, patience is not my strong point - never was...but you're right. I obviously need to be very careful right now...and not push it....but it's nice to know I'm not the only one who stuggles with this. Sometimes I imagine all the other people out there do a much better job at managing this illness than I do.
ReplyDeleteJenji, you put into words exactly how I'm feeling right now. Describing the PEM. After almost nine years you'd think I'd do it better. I just wish I could have a break from this....I wish we all could.
ReplyDeleteDominique, like I mentioned, I'm really looking forward to seeing how the sheilding works for you and if there are noticable changes. It would be really hard for me right now with the 3 of us in this tiny house and my roomate off for 3-6 months at least just diagnosed with a heart condition. Although I do do a lot of resting which means no computer, book, Tv etc. Let me think on this one for a bit.
Thanks Treya, Thanks Renee.
ReplyDeleteHow are you both doing this week?