From diagnosis to learning to live with Fibromyalgia

Posts tagged ‘Fibromyalgia. chronic fatique’

Starting Over 1, 2, 3

I think I have lost count the number of times I have restarted my writing. Just when I feel that I can really get down to some serious writing, something happens.

Realising to be a professional writer, the timing is never going to be perfect. I have a chronic illness that will never leave me, there is no cure, although there is more research being performed now than ever before. So who knows what the future may bring.

I have a funny ( to me anyhow) analogy that pops into my head every time I think of my writing projects. Just like the Julia Roberts character in Runaway Bride when her friend says after yet another jilted man is left at the altar. “You just need to get all your ducks in a row”!

It’s not just my health, i.e. Pain, chronic fatigue, trying to pace my life but still enjoy my time with my husband, dogs, friends and family. It’s looking for that perfect time to write, when my brain is in gear, all these stories are buzzing in my head; just waiting for me to find that perfect time and space to write.

There is cleaning that needs to be done, the guilt that I feel from writing when there is a blanket of dust visible. Please don’t sneeze or I will be here all day. The washing, the drying, putting the clothes away, trying on clothes to see what fits and what doesn’t. The shopping by Internet of course as I don’t want to use up my precious energy on walking around a store, that is if the pain and fatigue let me. Highly unlikely these days but sometimes I do try and generally pay for it later.

There are a million and one excuses I can use but who are am fooling only me. Feeling like I am the worlds worst procrastinator. Once read that even JK Rowling plays mine craft while having downtime from writing. We all have distractions, the true professional though treats writing as a job. Not a hobby which mine appears to be and a neglected one at that. So here I am jotting my thoughts down through the iPad and this new app I found today Blogsy! Why am I doing this on Boxing Day 2014? Well my husband found some writing apps and suggested that I look at them, it worked, here I am writing. Have I caught the bug again? Only time will tell.

My desk is nearly clear, an hour or so filing, some letters ( seriously overdue yet another item I am really good at putting off) . So no New Years Resolutions, no more promises to self or others. Just see how it goes, no pressure but gentle encouragement to write more and to keep writing.

This blog has just poured out on to the page with very little effort just the need to block everything else out and write.

There I have done it and guess what it feels good. Not sure if anyone will read it but the first hurdle sailed under my fingers and it feels fantastic.

 

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.

Lesley

%d bloggers like this: