Don't know what to do with myself

[tudorose]

Aaauugh. ADHD and RRV DO NOT go well together.

So today I'm at home. I came home from work early on Wed, had yesterday and today off and I've also been given Monday off but I don't know if I'll take it.

I'm feeling a combination of agonising pain, restlessness, boredom, frustration and exhaustion.

I can't play on the nintendo coz it hurts too much, I can't read fiction so that option's out, I've already done 2 loads of washing (which I was not supposed to do and will probably get told off for when DH gets home).

I'm only taking the morning dose of meds so that way if I don't have a brain it might make it easier but it's not really helping.

I don't like being off work. Get too bored and lonely. I'm thinking of going in Monday coz I'm supposed to be doing training but I'm worried that sitting in those conditions that are not at all ergonomic will make it all worse...

I don't know what to do...

[SquarePeg]

Hi, what is rrv, sorry haven´t heard of it, but gather from your posts you are in a lot of pain.

[tudorose]

It's epidemic polyarthritis and causes pain in the joints muscles and lymph glands and fatigue like you've never experienced in your life.

http://www.members.westnet.com.au/prohealth/rrv.htm

There's a lot of debate about how long it lasts but most say 2 months to 2 years probably coz if it's still going on after 2 years they dx you with CFS.

[ana futura]

Oh wow, that sounds like Lyme, but worse. Crap, that's a lot to deal with. Hugs!

[SquarePeg]

Well I had CFS for 10 years but luckily no pain. So with you, would going to work make your pain worse?
I suppose I am trying to say, what is your worst symptom and would going to work make it worse? How can you work in pain and what do you do?

You have obviously tried most things for pain have you tried the TENS machine or similar (there is one different from TENS which uses different frequencies)?

The pain must really wear you out.

[tudorose]

Originally Posted by SquarePeg

Well I had CFS for 10 years but luckily no pain. So with you, would going to work make your pain worse?
I suppose I am trying to say, what is your worst symptom and would going to work make it worse? How can you work in pain and what do you do?

That's what I'm trying to figure out. If I can manage the pain I'm ok but if it gets on top of me then I risk having a relapse. Also it depends on what I get asked to do. Sometimes the job can be very active.

Originally Posted by SquarePeg

You have obviously tried most things for pain have you tried the TENS machine or similar (there is one different from TENS which uses different frequencies)?

I need to get one of those. Thanks for reminding me.

Originally Posted by SquarePeg

The pain must really wear you out.

Yeah that happened this week. I let it go to far and ended up completely exhausted.

I just have a really hard time managing this sensibly because of the ADHD. My brain is still hyperactive and expects the body to follow so I end up pushing myself too hard, doing too much, not resting enough etc.. I find it really hard to know when to slow down or stop.

Also it's been soooo long now. I really want to get better. It's been since July last year. Before that I had a target of 7500km on my bike for the year. Since then I've done about 4 rides.

[SquarePeg]

ok well I can only tell you how I managed my cfs. I was in totally denial for the first few years, mainly because docs told me that it was all in my head, so I accepted that and just carried on going to the gym, working late and weekends (I loved my job).

But it got worse, it was only when I accepted it and "gave into it" and I don´t mean I gave up, I mean I started to listen to and respect my body and adapt accordingly.

So if I had worked late on night I wouldn´t work late for at least 5 days (however much energy or the money tempted me) because I knew I would suffer for it later. The temptation was to do too much just because I was having a good day but of course that would result in a crash.

So even though I was feeling good I really had to force myself to take it easy and limit myself. Trouble with me I am an optimist and always thought that when I had a good few days that it had gone and it would totally shock me when it came back a few days later. Looking back this seems and adhd thing doesn´t it, like I was never able to learn "too much work equals sick", took me ages.

ANyway I´m rambling, so stay home Monday and find something to do that will occupy your mind and not cause you pain. What about going for a massage or something pampering?

[tudorose]

Originally Posted by SquarePeg

So even though I was feeling good I really had to force myself to take it easy and limit myself. Trouble with me I am an optimist and always thought that when I had a good few days that it had gone and it would totally shock me when it came back a few days later. Looking back this seems and adhd thing doesn´t it, like I was never able to learn "too much work equals sick", took me ages.

This is EXACTLY what I'm like. I seem to be a really slow learner when it comes to this.

Originally Posted by SquarePeg

ANyway I´m rambling, so stay home Monday and find something to do that will occupy your mind and not cause you pain. What about going for a massage or something pampering?

Thanks so much for this advice. This is exactly what I need to hear. I've got a physio appointment on Monday so that should help things. It's really early in the morning (before 7am) so I need to not be a silly goose and get tempted to go into work.

Thanks again and you weren't rambling