Wednesday 4 July 2012

To Rest or Not To Rest

I’m struggling. It’s a hard thing for me to admit to but I am. What I thought had been a mild two year long relapse - turns out could quite possibly just be my every day pain.

Gradually since I was 9/10 years old my CRPS/RSD pain has increased in stages – aged 11, 14, 16, 19, 21 and 26 my brain and nerves have ganged up on me to upgrade the pain to a level I must get used to all over again, and these periods have been smattered with what I refer to as relapses (also referred to as flare ups).

It seems I’m heading for a relapse at an alarming rate.

Mike noticed that I was getting clumsy and forgetful (Bless him - he gave me a lecture on safety before leaving to go to California three week ago, he’s worried he’ll come home to a battered and bruised girlfriend). I’m tripping up constantly and have so far managed to lose my keys, TV remote, Shoes and most spectacularly our kettle!!

I’m putting my daft behaviour down to taking every medication available to me - I tend to miss doses when I’m not feeling too rubbish and then increasing to my prescribed amounts when needed, plus I’m sleep deprived.

But all of the above is down to pain - spasms, burning, pins and needles, and freezing limbs – all the usual but in higher frustrating, crippling and upsetting quantities.


I’ve found that I’m very angry with this relapse and myself. As you’ve all read, I’ve been having a wonderful time travelling, going to weddings, hen do’s, parties galore and shows aplenty and part of me is now wondering whether I bought on this relapse. In fact I can probably guarantee I have, but at what point do you say no to the invitations and rest?

I’m 28, I want to be out every weekend.... oh sod it! I want to be out everyday – doing as much as my very active brain can take but my unreliable body just won’t keep up. My parents, Mike, both our families and most of my friends have spend forever telling me to slow down but I’m just no good at balance – physically or socially it seems!

But it’s my own fault, I have no option but to rest now, I have started napping again in the day so I can socialise in the evening, I still have one more hen do, wedding, Birthday party, Engagement celebrations, leaving do and..... you see my problem? These are big events in the lives of my nearest and dearest... How can I say no?

It’s been well documented and discussed in media how young people are now suffering with FOMO (Fear Of Missing Out) due to people’s lives being plastered all over Facebook and Twitter – I am completely guilty of tagging myself in cool places, uploading hundreds of photo’s and I’m addicted to pressing the Going button on events pages, but my FOMO came long before Facebook I could have coined the term by the time I became a teenager because I was in bed or in hospital (usual both!) whilst the world carried on without me – I hate that feeling and even as I type I have a sinking in my gut that I’m going to miss out again soon.

For now I can still get out of the house, I’m not bed bound just yet and I plan to make the most of things until that happens. (Let all cross our fingers I bypass the old "stay in bed" phase!)

CRPS/RSD sufferers desperately need more research, support and treatments – After 20 years of it I’ve had enough, I’m tired. So please Share on Facebook and RT this piece.

For more information on the condition you can click here!

L x

1 comment:

  1. Give it your all. Live for the moment. I have lost too many young friends that had so much more to do. Don't be a slave to your CPRS until you absolutely have to be. If you give in now and in 20 years time they find a cure you will be regretting not having done anything in that time.


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