Must not do EVERYthing: The prednisone is controlling... - NRAS

NRAS

36,539 members45,164 posts

Must not do EVERYthing

Azabat profile image
4 Replies

The prednisone is controlling my pain so much that I feel like I should be 'well' again. My acquired brain injury worker has me using a timer to intersperse activity with rest, but it's so frustrating! My hands are giving me hell right now, and Kelly had to come stop me cleaning when the timer went off. *wry grin* I just WANT to be fine, and to finish things. I hate leaving a task in the middle, and I can be ridiculously stubborn about it. That's always been so, very often to my detriment. It's smack in the middle of cherry blossom time, and I so want to be out taming the jungles that are my yard. Some of it is that I've always been the impetus in my family - chores don't really get done unless I start the movement. The guys would happily live on pizza and pop (and knee-deep in boxes and cans) but the blind, epileptic, diabetic, celiac wife would not survive well on that regimen. I crave order in a way they just don't seem to. Sigh. I'm going to pick up some groceries today, only a few, but I know I have to bank my energy for that. Does it get easier? Or at least more habitual? I have discovered that having a cup of tea is an excellent excuse for a rest.

-Bat

Written by
Azabat profile image
Azabat
To view profiles and participate in discussions please or .
Read more about...
4 Replies
KatyMary profile image
KatyMary

Oh Bat, I read your post and thought "you sound a bit like me" although I don't have a fraction of your health issues. We battle on because we want to be well, to be like we used to be, but we have to relinquish that little bit of control and pace ourselves. My family, whilst keen to help with the awkward or heavy stuff I struggle with, don't seem to understand that it's the little things that get me down - not tidying up after themselves, or putting the dishes away after dinner, and so on - silly really!

We need to accept our limitations, but not be bowed by them. Doing a little of housework is not exactly the deep clean I really want to do, but it's a start. And if I rest for a while (with a coffee and my Kindle) then I can do another little bit.

Warmest wishes, take care. Katymary x

Jora profile image
Jora

I can really identify with some of that. Pacing has never been an easy concept for me. I think I only have two speeds - flat out (as on a motorway) and flat out (on my bed).

Prednisilone (UK equivalent of Prednisone) complicates things further. At a high dose, it gives me near-manic energy. Given the right equipment, I could probably have re-roofed the house at 40 mg, but I find tapering really hellish; my mood becomes very volatile, and although I still try to remain active and complete the myriad of things that I initiated at 40 mg, I simply cannot and this makes me very depressed. But I try to tell myself that's it's not me, it's the drugs, just as the RA doesn't own me, I just happen to have it.

I would like to tell you that it all gets easier. Maybe it does, but I find I have to work on the self-acceptance for that. That's were I use EFT; not daily, as per my intention, but several times a week. I think I'll do a bit right now ...

Good Mornight

Jo. xx

PS. interesting that you left (RA or RD) off your long list of conditions ! I wish that could be true for you.

Sandrajb profile image
Sandrajb

I really get the need for order. At the moment we are having a bathroom refit (plumbers, tilers, electricians and dust everywhere for days and days) and my husband began decorating the sitting room over the weekend. Nowhere to hide! I pushed myself yesterday into overdoing things too and really wanted someone else to cook dinner. When it didnt happen that way I collapsed into a complete frustration meltdown and scared the hell out of everyone especially myself. Felt like a mass murderer this morning! Am coming to realise that my emotions are so close to the surface with this chronic condition that I really have to bank energy as you say or just get out of everyone's way and say The Serenity Prayer

"Grant me the serenity to accept the things I cannot change,

courage to change the things I can

and the wisdom to know the difference".

Will look up EFT and have discovered a really good website of meditations and soothing sounds that helps, if I can get damned the technology to work. (still frustrated it seems!)

calm.com/

Sandra

helixhelix profile image
helixhelix

We'll make a Brit out of you yet with the tea breaks.....

I've somehow taught myself to chop and change tasks. Whereas before I'd prefer to keep going on something until it's finished, now I swap between several things. So if I need to do something active, then I'll also order myself to do other sitting down things every half hour or so - like write a letter (play the piano?), check out posts on HU, fold up all the socks, meet a friend on a shopping trip and stop for tea, sow some seeds, and so on. I found it's better that way than rushing around for the morning and having to lie down all afternoon.

You may also like...