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A Fatigue Flare

A fatigue flare is debilitating.
Its life changing.
It comes at a time when you are already struggling with chronic life.
It’ll replace the insomnia.
Four hours of sleep a night will be replaced by twelve.
And even then you could sleep more.
Naps last four hours.
You are horizontal on the sofa when you’re awake.
You’ll lose your appetite.
You’ll feel persistently sick.
You’ll have to drink with a straw.
Noises are too loud, smells too strong, lights too bright.
Showers are impossible, and don’t even think about washing your hair.
Cleaning your teeth becomes a dreaded chore.
And work, oh work, how your body will cope you will never know.
But you’ll make it, just.
It’s about asking for lifts home from work.
Then getting into bed without removing your make-up.
It’s about asking for help with dressing and putting on pyjamas.
It’s about your favourite company becoming your cat.
Because you can’t hold a conversation.
Or string a sentence together.
You can’t find the right words.
Questions are unbearable.
Thinking hurts.
You’ll watch re-runs of your favourite shows.
Because you can’t handle new themes or stories.
YouTube becomes too busy.
Twitter and Instagram overwhelming.
Just at a time when you need your online chronic illness community most.
You’ll become to unwell to communicate with them.
Everything hurts from your fingers to your toes.
It’ll hurt to sit, and hurt to lie down.
You’ll take more medications, you’ll feel even more sick.
You’ll be too exhausted to feel sorry for yourself.
But never too exhausted to feel afraid.
You’ll have no choice but to wait it out.
Eventually it’ll pass.
You’ll go back to your normal exhaustion, the normal fatigue.
Insomnia will return.
Naps will be two hours.
And you’ll be able to hold a conversation again.
Until the next time it returns, like a rug being gently pulled from beneath you.
You’ll fall back into bed, and begin the process all over again.

 

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Life With Fibromyalgia

A friend shared this post on Facebook. I don’t usually read long posts like this, or even acknowledge them, but this one really rang true to me and I felt the need to share it to raise awareness, help understanding of such a misunderstood condition, and remind my friends, both off and online, what life can really be like for me.

#Fibromyalgia took hold of my life 15 years ago it was totally unexpected, it just took hold of me and changed my life overnight, people who knew me before #Fibromyalgia know I was a hard working person who enjoyed life, #Fibromyalgia took all that away from me… Don’t judge what you cannot possibly comprehend as if someone had told me about #Fibromyalgia before I was diagnosed I too would not have been able to understand. No one is immune it’s there just waiting for the chance to control your life, all I ask is that my friends are patient and understand sometimes I can’t do normal things without paying a big price a Flare up !

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you with house/garden work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the curtains or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

11. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

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The Ups and Downs of Being ‘A Part-Timer’

People say how lucky I am to only work 26 hours per week. And I guess I am in a way, who really wants to spend 40 hours plus a week at work? Well, I’d quite like to go back to a full-time nine to five actually.

I work so few hours because I really can’t work any more right now. I do this over a four day period with a mid week break which works quite well for me, but I’m still utterly exhausted and riddled with pain after every day, especially my one eight hour day at the beginning of the week.

Working part time doesn’t allow me to spend my time off gallivanting, skipping through meadows, or reliving my raving days. I don’t come home and cook up a daily feast at 3pm every day, or take myself off shopping for something I ‘need’ such as another large pile of books (although I quite fancy doing all of those). It allows me to rest, rest, rest and take additional painkillers so I have more time to deal with the side effects, then have another rest. On Fridays I come home and sleep for the entire evening, because I just can’t function in any other way.

At weekends I’m not bursting with energy after all that rest, I’m ready for more rest. Which is really bloody boring at times might I add. I’m a bookworm, someone who loves to continually learn, I love going for walks or discovering new places (especially now I live on the coast), I’m a gardener and a baker. But I don’t do much, if any, of that, because brain fog makes it difficult to read much more than short magazine articles, and I can’t walk far because I’ll be so exhausted by the end of the road and my body hurts too much to be able to support myself with a stick or crutches. I can’t bake because I don’t have the energy to do the big clean up afterwards (I’m quite messy – think Selasi in the GBBO) and my gardening consists of keeping my lemon verbena plant alive through the winter.

Amongst all of this I’m half way through getting an Open University Degree. I’ve had to defer twice, and it’s taking me far longer than ever expected, but somehow I’m doing it. I’ll be honest, I can’t really remember a thing I’ve learnt along the way when put on the spot, but I’m getting good at answering University Challenge questions with my parents so it’s in there somewhere. I’m dreading the exam next spring, but what will be will be. If it doesn’t work out I’ll just try another module without an exam.

Then there is the financial freedom that working full time could bring. My wife currently earns considerably more than me and the is some  pressure on her to keep it that way, much to my dismay. But I’m lucky to be in a job I love and earn enough to pay my half of the bills and buy all the boring household groceries (she gets the fun tasty food and treats) and still be able to afford to treat myself to a few subscription boxes a month.

So, while working part time isn’t all doom and gloom as it means I actually get to see my wife on her incredibly unsocial shift pattern, and I get extra cuddles with kitty, it’s not all it’s cracked up to be when you work less due to health reasons.

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Pyjama days and kitty cuddles

Karen xx

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Living the Best Life with Fibromyalgia – A Book Review

Last summer I was contacted by Alisha Nurse. She’d written a short handbook based upon here experiences of living with fibromyalgia and asked if I’d have a read to see what I thought. Well, the months ran away with me in a blur of flare ups, hospital appointments and a few stressful events, and I never got round to reading the book. I never forgot about it though, infact I thought about it quite often. I made it one of my New Years resolutions to read the book, and last night I finished it.

The book isn’t too long, 78 pages on my Kindle Fire, and it’s clear from the beginning it’s written by a fellow sufferer. I instantly found I could relate to the author and this made me want to keep on reading and not put my Kindle down until I was finished. Many books I read on health subjects tend to be patronising, use positive thinking and distraction to make it go away kind of books, but not this one.

Alisha is honest about the ups and downs of life with both fibromyalgia and clinical depression. She begins by telling us about her childhood, family remedies and about her battle in both getting diagnosed and getting the help she really needs. The fact this books touches on her ongoing fight with depression is a good move in my view, lots of people with fibromyalgia have depression or know someone who has it, so it makes it even more informative to read, leaving you feeling closer to Alisha and like you really know her.

My favourite part was the recipe section for her healthy, clean diet, and the fact that it includes so many recipes based on her family history in Trinidad. Ginger tea, garlic tea, fish, burgers, soup, there’s something there for everyone, even fussy old me.

She also details the supplements she takes, some of which I take too, so it’s great to know we have quite a lot in common and I’m heading for the right track. She talks about pacing, getting back to work and meaningful living, all of which is not necessarily new to us, but combined in a great little handbook together like this, is just the thing I personally have needed to re-evaluate where I am with my health and what I can do to improve things without waiting for the help of the NHS on my months long waiting lists.

Ultimately the book details how Alisha has learned to live her life as full as possible, whilst managing the symptoms of her illnesses as best she can. And I think she’s cracked it. It sounds like after much trial, error and a little help from her friends, she back on track, and she knows exactly what she needs to do to keep it that way.

I personally have found the book empowering and, as I said above, it’s made me step back and take a look at how I am dealing with my health, what I can do to improve it and how I can keep it that way.

If you suffer from fibromyalgia I would strongly recommend this book to you. It took me just a couple of short evenings to read, was fibro fog friendly, and is something you can constantly refer back to if needed, if not just for the yummy recipes.

You can find Alisha’s website here and it’s also worth giving her a follow on Twitter if you’re a Twitter gal, or guy, and of course there’s Facebook.

I really hope you all find the book as interesting and useful as I have.

Happy reading!

Karen xx