From diagnosis to learning to live with Fibromyalgia

Archive for March, 2011

Forms, Confusion and Pain!

Hi,

I guess I spoke too soon when I thought I could blog once a week, turns out I can  only blog or even write anything when the hands allow!

Before my diagnosis I used to feel pretty run down as if I had a virus or fighting something at least 2 or 3 days a week, then when I felt ok I would run around trying to play catch up or all those things I wanted or needed to get done.

We all have them: the TO DO list that never quite finishes because you rewrite it with all the things you did not have time to complete and add more on!

Sound familiar! Well apparently my previous behaviour was predictable but makes it worse. It seems I have been suffering for many years but did not know what it was! So we solider on!

So since starting the medication to help you sleep deeper and have less aches and pains, less fatigue, does not always work for any medication to work it has to produce a change in the body, unfortunately some of these changes come with unpleasant side effects.

So when you are having a good day, you have no idea how much is too much until it’s too late!

Lately my left arm has been suddenly going numb not good when your ! Fibromyalgia is not just a physical pain but emotionally it is draining and very frustrating. It is the unpredictability of it.

I feel I can’t make plans anymore as I will probably need to alter or cancel them. I know I have lost the use of my left-hand so it has affected my confidence in my independence. I feel I can no longer just jump into the car, go shopping, pop out for an errand or a drive as my left arm and leg misbehaves when they feel like it.

My husband has been fantastic and even purchased a fancy adjustable walking stick for me! problem is I do not feel safe anymore, I do not trust my body to do what I want it to do. It is that loss of control that can knock you down quite quickly.

Today I thought I was having a reasonably good day, even managed to start spring cleaning one room, typical me I chose the one room with all the china, the glass, the crystal and yeah even polished the silver. Yes it was the dining room, still I broke the back of it before having to have 30 minutes on the cyclo-massage table to work out the aches and pains.

Still having a good day, until the postman arrives, I think that is one job I could not do, you are either bringing junk mail, a bit of cheer or what happened to me today what I call government junk! Yes you guessed more forms to fill in. My hands started to throb at the thought of it!

Still I came across a website and blog http://www.ButyouDontlookSick.com and Christine Miserandino with her spoon theory. Christine suffers from Lupus and it was her way of describing to her friend how living with lupus affected her daily living.  http://bit.ly/cPitsM is the link. To me is described how I was dealing with chronic fatigue and pain.

It still amazes me how much support I receive from fellow writers and followers on Twitter and Facebook. I have never met them but they are always there with a friendly word or suggestion.

This week when I complained my hands were hurting and it was painful to type or write, one of them Kitty suggested I try Dragon a talk/type software for my laptop.

As the stiffness and pain increases  whilst typing this blog, it is something I will be looking into.

Well my writing timer has told me I have sat down for too long, its time to move before my joints seize completely. I hope you enjoy my journey as I learn to deal that Fibromyalgia has to learn to live with me and not dictate who I am.  Thanks for reading, till next time, love to hear from you.

Lesley.

 

Health Matters 101

Yes, yesterday it seemed I would only be able to blog once a week but I think this blog will become cathartic with my illness.

Even though I have worked in the health profession all my working life, when we are heathy we never realise just what we have.

Today is one month since my diagnosis although I have probably been suffering for many years previously. I staggered out of that hospital I did not want to believe what the consultant said to be true.

She did say with knowledge, I will be able to help myself and improve. Unfortunately the more I read as previously mentioned the more over whelmed I felt. There is a lot of conflicting advice out there.

One I do not agree with, is the no coffee, tea, chocolate or alcohol! A ban on caffeine!  Sorry! Unless the bigwigs can guarantee that I will have no more pain, no headaches, no upset stomachs, no more limping because your leg is full of pins and needles then no!  Bring me the Double blind Randomised trial with the evidence then I might consider it.

I have always believed in moderation and a little bit of what you enjoy will always do more benefit than harm.

I gave up smoking for the last time over 20 years ago, for me the evidence is in, there is not one positive to smoking.

The reasearch is also shouting out at us to enjoy an occasional glass of wine as the heart benefits from it, well I always like to look after my heart.

Fibromyalgia syndrome from what I have read is a lack of serotonin in the brain, it’s that feel good relaxing hormone. Hello!  Chocolate especially the dark stuff of 70% and above in small doses is good for us and raises serotonin levels. That good enough for me, it also means husband will not pinch it out of the fridge as he does not like it.

I will actively seek out all foods that raise my serotonin levels and I will try to lose a few pounds. I am thinking less weight to lug around less pain but we will wait and see.

Over the past few weeks whilst taking the medication, which as a side effect adds weight by the way! I have at times felt I would never have the good days again but most of all I would lose my independence.

Sure there are going to be days when I can’t bend to dry my feet and I fail to cook dinner for my husband, either because I am too exhausted or can’t control my limbs to be safe in the kitchen.

I had a good day yesterday and so far I have had an even better one today! I managed a 30 minute walk with the dogs today and managed to drive by myself to town. I did limp back to the car but it was worth it.

Last night as I was stirring the dinner as it cooked suddenly I could not use my left arm, (I am left-handed) it had become heavy, felt dead and useless, did I give up, NO! I tried to stir with my right and needed to eat right-handed! Try it sometime it is not easy unless your ambidextrous to eat with your other hand.

What I struggle with most, is just how much I can do on a good day, I know I can’t run around like I used to, playing catch up all the time and I am guessing my boundaries will be different all the time.

What have I done to achieve these good days well shortly after I was diagnosed, my husband and I had booked to go the NEC about a 2 to 3 hour drive depending on traffic. We managed to park in the disabled car park and get the bus to the entrance, something I would not normally have done but we wanted to limit the amount of walking and save my poor resources of energy.

After disembarking from the bus and entering the arena, it was not far before the limp became apparent and I was using my husband for support.

Two things happened that day I was spotted limping by a side stand who wear offering massage, I love massage who doesn’t. I tried it, needed help to remove my walking shoes, could not bend or raise my legs far enough. 15 minutes later, the salesman offered for me to walk a short way in front of him and my husband. Do you know what no limp! Yes the pain had not gone, but I could walk normally. He offered for us to come back in an hour and have another treatment. My husband was so pleased we could carry on around the exhibition that we indeed returned on the hour. I had a second treatment, I had less stiffness and pain.

My husband was sold and he very generously bought it for me and as I have a recognised condition  of Fibromyalgia we were able to purchase it VAT free bonus!

The company pulled out the stops and I received my massage bed the following day. Since then every day by one ( my headache was too much for the vibration) I have used it 3 to 4 times a day. Psychological or not I have had 2 good days and that is worth its weight in gold.

Thanks for stopping by on my personal journey! Love to hear your thoughts! Until next time when the fingers allow me to type.

 

From Anger to Acceptance

It is nearly four weeks since my diagnosis, since I felt my world come crashing down!

However I have  a very supportive husband, supportive friends, many I have never met  we just support each other online.  From my fellow writing friends to friends I met through an online slimming group. It is strange but these online friends have given me more support and strength than personal friends I have known for years.

My good days are still far and few in between the not so good to the very bad when you just want to hide and cry why me? I have always been an optimist but have learnt the hard way I also have a perfectionist streak.

No I am not obsessing about the cleaning, but often I have failed to delegate and have completed the task myself as I knew it would be  completed right and quicker. This has taken me a long time to realise.

I now have no choice but to delegate, I still do not like it but it is a fact I can’t complete every task myself or by myself. I have discovered I hate asking for help, luckily my husband knows this and offers before I need to ask.

I find I have to try new ways on doing the simplest of tasks, I am often so stiff in the morning, I need my husband’s assistance to get into the shower, support me getting out and on occasion dry my legs as I am either exhausted or can’t bend that far without pain.

I have so far only given in to a pyjama day only once, I do still discipline myself to get up, shower and dress. I maybe exhausted afterwards but it is much easier to me than giving in.

Something I once too for granted is now an achievement. I managed to go grocery shopping with my husband last week and he took me for a nice drive in the country the following day. I paid the price of pain and fatigue for days afterwards.

I normally handwrite my notes first  before typing but it seems that may need to change. I don’t think I am alone in the frustration of this invisible illness. Unless I have shooting pains in my legs causing me to limp then to the outside world I look fine.

Even typing this blog, is now causing pain in my fingers, maybe I should be like the great Barbera Cartland and dictate my work to a band of secretaries!! Yes I am trying to keep my sence of humour although it failed me this morning when a recruitment agency called me to see if I was available to go back to my old life. Biting down on my lip, I bravely told him to remove my name from their books as I had been diagnosed with Fibromyalgia it was doubtful I could return to that way of life.

I walked away from my old life 2 years ago thinking I would be bored within a few months and want to go back. I started writing courses and writing books, I found a new lease of life a third career I looked at it. I enjoyed writing. I did not want to go back to rising at 5am to drive to an airport to fly to some meeting or spend too many hours driving around, Hampshire, Wiltshire and Dorset. My husband enjoyed coming home to me,  a home cooked meal and lots of baking.

However, even though deep down I did not want to return to that life or even my previous one as a nurse, I felt angry and hurt now that choice had been taken away from me.

So with stiffening fingers I may not be able to blog too often, I hope at least to make it weekly. I will not give up on my writing even if it will take longer to achieve my goals.

My goal this week is to realise my limitations but not let it rule my life. There are still going to be days when I am going to scream why me? I have been known to be a survivor all my life. So although it may on occasion overwhelm me, I know I have friends, family and a fabulous husband who will be there to help pick me up when I am down.

Thanks for reading, I welcome comments and feedback on my personal journey. I will always reply. Hope to see you soon.

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

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