Sunday, 4 May 2014

Looking after myself - top tips for coping with Fibromylagia #SelfCareSaturday

Living with an invisible illness is cr*p on two major points. One- very simply - you feel terrible a lot of the time and two- you look fine most of the time so if you don't look after yourself no-one else is likely to remember you are ill and jump in to coax you to take it easy.

#teamhonk St Albans
Being towed by blogger Mary Louise
 from mymodelmummy.com when I
couldn't walk or cycle for #Team Honk
To be fair, my close friends and family are very good now at spotting when I am running on empty, when the crash is coming, when the flare up will light up the sky like fireworks on bonfire night. And then asking how they can help. Thanks guys- I really do appreciate it as I get embarrassed to admit I'm struggling and will battle on until you force me to stop!

After years of living with Fibromyalgia Syndrome, a chronic fatigue condition which comes with delicious side servings of pain and confusion (among other symptoms) I now am getting better at spotting when the wheels are about to fall off and employing my tactics at fending off the worst of the attack.

Of course  I should be pacing myself so the flare-up never comes but did I mention I have 7 children? Yep - pacing not really practical most of the time.

So fire-fighting it is. Warmth is my first line of attack. Warm water is great -assuming I haven't left it too long and I can actually get into the shower. Baths are not so good - I find it too hard to get in and out most of the time.

I did buy one of those electric-powered so-called spa bubbly water mats to put in the bottom of the bath after finding jacuzzi sessions are the absolute best thing for me (any hot-tub firms want to install one for free for me to review long term? No - thought not.) but the mat I had blew cold air and after about 5 minutes I found myself wet, cold and unable to get out of the bath. Cue scenes from a Greenpeace video as my DH struggles to rescue this whale from the water.

Warmth in the form of heating and blankets is also good. My electric under blanket on my bed is my best friend and I also have an electric heated shawl (sexy!) which I often use during the day while I'm blogging.

madmumof7 walking with alpine walking sticksI've recently discovered the joys of alpine walking sticks. I have a not-very funky NHS wooden stick, and have tried the floral fold up things but they both make me feel about 90. When I'm walking with the alpine sticks I might possibly be mistaken for a serious mountain hiker. Maybe. At the moment I am borrowing a friend's sticks (which are luckily heigh adjustable as she is about three feet taller than me!) but I think they might be on my birthday list.....

I don't do a lot of exercise - despite official advice I find it often makes things worse but a gentle walk cheers me up as longs as it's not too far and generally on flat ground. So hurrah for sticks which mean I can cope with slightly more slopey hills which makes it much easier to get around in my local area.

But anyone with a chronic fatigue condition is going to guess what I will name as my top tip for coping? Yes - rest. Not 24 hours a day bed rest - that's not good for anyone, but recognising that OK it's 6pm but for me, it's bedtime.

madmumof7 on shopping trolley with seat Ideal Home ExhibitionAnd I know I keep going on about it but the best thing I have bought this year- nay this decade maybe - is my shopper trolley with its cute little fold-down seat. It's especially useful for trips into London and blogger events and was a life saver at the recent Ideal Home Exhibition where I not only used it to rest regularly but on the train on the way home where without it I would have either had to beg for a "disabled" seat and get the weird looks from people wondering what's wrong with the apparently healthy looking woman, or stand for 2 hours.

So there we have it - my top tips for people with chronic fatigue and pain conditions from my own self-help list. Warmth, find the right aids to help with appropriate exercise,  and rest.




Not Even a Bag of SugarThis post is linked to #selfcaresaturdays run by Kylie at Not Even A Bag Of Sugar where we are encouraged to share what we have done to look after ourselves. Click the badge to find more great blogs.

1 comment:

  1. Great post. Having a long term condition is all about balance and finding what works for you. Thank you so much for sharing and linking up.

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