From diagnosis to learning to live with Fibromyalgia

Diagnosis and beyond

I woke on the 10th February 2011 early with anticipation.

Today I was to see a Rheumaltoligist, hopefully I would have some answers as to why, two or three days a week, every week I felt as if my body was fighting a virus. I felt tired all the time!

Unfortunately I woke with searing pain in left hip, radiating down my leg, both arms felt heavy and had pins and needles. I still needed to shower dress and leave the house with my husband early enough to beat the traffic, park and walk to my 9am appointment. Not an easy feat when you do not know what is wrong with you and why your walking is such a struggle.

We parked very early but I needed the time to pace myself holding onto my husband as security and a walking aid. We stopped for a coffee in order for me to regain my breath, (feel so unfit these days). When I finally arrive for my appointment, the pain is quite severe. However whatever I expected that day, I did not expect to have my world come crashing down and feel as if my legs had been cut off.

I had been given my diagnosis of Fibromyalgia, told there was no cure but to learn to live with it.  It is not fatal, in fact it has been shown to be quite common. It was a joke right! Common how come I had never heard of it apart from a passing comment from a physiotherapist. Given leaflets and web addresses to read. More X-rays and blood tests taken but nothing really untoward is shown as is the case with Fibro.

I was told it is related to my sleep pattern, apparently I do not get enough deep restorative sleep but stay in light or REM sleep (it’s when we dream). No wonder at times it felt as if I had been dreaming all night, I probably had, ha! I thought it was my overactive creative mind dreaming up new stories or characters for future novels. Everything the consultant told me fell into place. I was told some medication to help restore my sleep pattern and I would soon be feeling better after all I was still young, so why did I feel like my grandmother who is nearly 90.

Somehow that day I made it home, my husband had another appointment, I felt it was a bad dream that I would wake up from! My consultant said I needed to pace myself as what I had been doing was on my good days, was running around trying to play catch up, followed by more bad days.

Being told that information is empowering, I read every leaflet and scoured the web. Unfortunately for me the more I read the more overwhelmed I felt. I had always been busy, I loved being active, walking the countryside and hills with my husband and dogs. I loved to dance, did this mean I could never dance like no one watching ever again.

Medication started and great, sleep was better but I felt even more tired and just wanted to sleep all the time. Side effects can be horrible but the blurred vision was the worst I thought I was going blind. So you start to play with doses of your medication to get the balance right, to get deep sleep, manageable pain with little side effects. I am pleased to say today is a reasonable day, hence I decided to take action and form this blog.

However as I sit and type relatively comfortable, when I move, it is going to hurt like hell, so my writing timer has a new use, telling me not to sit for too long.

I had been debating for some time whether to return to work or not and continue my writing. Now it seems that choice is taken from me. I do not see a time when an employer when employ me when I do not know when I will have a good day!

So maybe this diagnosis has a positive side, I now can’t think of returning to a J O B so it made the choice for me. I am a writer an author, a wife and a mother, a daughter, a grand-daughter, an aunt a niece, a sister a friend;  i have many titles but the one thing I am not is a victim.

Yes I will learn to live with Fibromyalgia and no doubt I won’t get it right every time but I have decided it also has to learn to live with me.

Thanks for reading and joining me on my personal jouney.



Comments on: "Diagnosis and beyond" (4)

  1. WOW!Love the blog Leslie. I can relate in so many ways. It is hard to keep the positivity flowing in such circumstances but, I totally agree, we are not victims. Keep up the good work and sending very gentle hugs to you.


  2. Thanks Kate, this one feels so personal right now, I think I will be writing again and again on this one. Lesley xxx

  3. Lesley, I know exactly how you feel. I had never heard of fibro before my diagnosis. It feels good to know that there is something wrong and its not all in your head, but the realities of that diagnosis are difficult to comprehend. Its a hugely double edged sword.

    One of my problems with it, is the fact that its an invisible illness. You look ok, look young (as opposed to 90) yet struggle with day to day life and trying to explain to people how bad your feeling on any given day just causes strange looks of disbeleif. I hope that you have a good support network around you.

    I love that you’ve started a blog and will follow you with interest.

    Happy blogging, good luck with the writing and I wish for you easy days x

    • Thanks Rebecca, I was feeling so overwhelmed as there is too much to take on board, I thought blogging about it, might help. Wishing you many good days xx

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