From diagnosis to learning to live with Fibromyalgia

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When we become impatient when waiting!

It does not seem to matter what we are waiting for we can soon become impatient with the anticipation of what is to come.

It appears it does depend what we are waiting for??

If it is something nice, a birthday, a celebration, Christmas, these can be all things we get excited about and eager with anticipation. The waiting is not as bad, we do not become as impatient. Children can’t relate to time, you might explain how many sleeps to the event, as adults sometimes we can stress we have everything prepared for the event.

We know when the deadline is looming and this can have positive and negative aspects to how we view the event.

However when we are waiting for results from tests, be that exams or health tests our emotions can swing like a pendulum. From nervous to depths of despair to trying to think positively as to what’s the worst that can happen!!

For exams we generally know when we are going to receive those all important results, whereas with health results it is out of our control. You can feel vulnerable, you think the worst, your emotions can take over.

So how do you cope when you feel out of control, when you are facing the unknown. We can rely on our friends and family for support but there are only so many times they can reassure you and you still feel out of control.

Depression can be mentioned, but to be honest you not really depressed, you are not having suicidal thoughts, black thoughts, you just want answers and you it now hence the impatience.

I don’t know about you but I do not get impatient normally when driving or waiting in a queue but when it comes to my health and the unknown, the vulnerability takes over, you feel another person. Personally I had my MRI scan a week ago, I know it has been reported on by a radiologists but waiting to be told the results from a doctor may take another three weeks. This morning I decided I could wait no longer and definitely not three weeks. So I rang the hospital, found out it had been reported on but the consultant had not read it. So now I wait for a phone call, my heart is in my mouth every time the phone rings. I do not want to use the phone in case they are trying to ring me. When someone rings I want them off the phone quickly, when my family use the landline to make a call, I am checking the answer phone to check I have not missed that call.

It may not come, health professionals are busy, I am not the only patient but all this seems irrelevant when you are waiting. I am supposed to be writing my novel but can’t concentrate. My life is being gripped with fear of the unknown, have you ever felt like this, a paralysing fear that puts your life on hold until your fear is answered.

Well followers of this blog will know, I am writing this as a cathartic way of dealing with my health issues. Since my diagnosis you feel out of control, you life is not your own anymore or is it the little voice in your head. You know the one, the negative voice who tells you, no you can’t do that or this, you become gripped with your own fear!

I then remembered a book I had read years ago by Susan Jefferies “Feel the Fear but do it anyway”, we can take control of that voice in our heads. We can choice to let it dominate our lives or tell it to be quiet!

Yes I know this is easier said than done but if you ever find yourself in a similar situation I strongly recommend her book. You can tell yourself it is ok, it is normal to feel fear of the unknown but you can control it.

I need to learn as we all do with Chronic illness, we need to learn to pace ourselves or be prepared that if you choice to have a busy day with your family full of activities that you are probably going to pay the price. Extra fatigue, pain, exhaustion, poor sleep because you are over tired and your body can’t quite shut off.

The choice is, if you know you have a busy fun-filled day, you plan a couple of quieter ones to follow it but it is your choice. I read of one lady who knew she was going to pay with more pain but the joy of pushing her child on a swing to her was worth it!

So like me stop waiting and re start living, to quote a well known advert “Your Worth it”

Till next time take care and live your life the way you want to not the way your health dictates.

When you just have to face the facts!

It has been a rollercoaster ride since my diagnosis of that I cannot deny!

I had the added problem of losing the use of my left hand and shooting pains down my legs, hence it was unsafe for me to drive and walking very far is very painful.

This got my mojo down more as it seemed to rob me of my independence!

I know I am not alone in this and there are folk far worse off than me!

Some of my readers will know I am waiting for a MRI scan of my brain and spine, I joke with folk it is to see if I have one. We are great at self mocking when we are feeling low. I have recently returned from a sunny break in the South West of the UK.

You are going to ask well how is this of benefit to me?

Hopefully if you bear with me I will explain. I started this blog when first diagnosed as my way of dealing with it and I thought if anything I can share can benefit anyone else, then it was even more worthwhile.

During my visit I caught up with Family who themselves are adjusting to seeing me with a walking stick and in pain. However one person who I will never get tea and sympathy given on a plate  from is my younger brother. Well slight misnomer, he will offer a cuppa when I visit.

For once I was able to learn from my younger sibling, he had recently been through many changes in his life and he had adjusted and will keep adjusting as the needs be.

When I told him, I was waiting for my MRI appointment and hopefully it was a mechanical problem that could be fixed, he said”and what are you going to do if they can’t fix it”? You deal with it, you adjust your life and move on. The conversation was a little distressing at the time but you know what, he is right. Sometimes you have to face the facts and deal with it!

When my hands were sore from typing, did I cry in the corner, no I mentioned it on Twitter and soon came the suggestion that I try Dragon the speak/type software and I did and I was even invited to guest blog about it on my mentor’s site Nick Daws. In other words, I did not let my sore hands defeat me I dealt with it! My brother was not being hurtful, he was getting me to face the facts.

Sometimes we can live our lives in the what if???

What if I won the lottery?

What if I had the perfect health?

Well do you know what, I don’t even play the lottery, so that’s not going to happen, and I do not have the perfect health but so what!

I am alive, not always kicking, legs can hurt too much! Fibromyalgia is not life threatening, it’s not nice, it’s not even constant, it only constant seems to be is that it changes.

It is hard when you have stabbing chest pain and classic pains shooting down your arm. You start to think you are having a heart attack but the then Fibro laughs at you and the pain moves to your leg and head and you just have to tell yourself, it is Fibro messing with your head!!

I learnt a lesson from my younger brother, no matter what life throws at you, all you can do is laugh right back at it! We can adapt, we can change, that is what makes us human after all.

I hope you enjoy these insights with my journey with Fibromyalgia, drop us a line, feel free to comment, I will always reply.

To more good days than bad, enjoy the sunshine 🙂

How do you describe how you are feeling whilst coming to terms with it yourself?

I recently joined my local Fibromyalgia support group. I probably will not be able to join their meetings very often. I now have links to others who are living with this condition everyday as I am.

In among st the welcome letter I received ,was a letter addressed to “Normals”.

I have tried to discover the original author and despite my best efforts, have been unable to do so. Please if anyone knows of the original author of this letter I am about to share with you, please let me know, so I can give them full credit for it. I have not edited this letter but rather dictated it as it is presented to me.

A Letter To Normals

Having FMS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand-these are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable amounts of pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, work and my family and friends. Most of the time I’d still like to hear you talk about your’s too.

Please understand the difference between “happy” and “heathy”. When you have the flu you probably feel miserable with it, but I have been sick for years. I cannot be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It does not mean that I’m not in a lot of pain or extremely tired, or that I’m getting better or any of these things. Please don’t say, “Oh you are sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand for 10 minutes does not necessarily mean that I can stand up for 20 minutes or an hour. Just because I managed to stand for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralysed or you can move. With this one it is confusing.

Please repeat the above paragraph substituting “sitting”, “walking”, “thinking”, “being sociable” and so on – it applies to everything. That is what FMS does to you.

Please understand  that FMS is variable.  It’s quite possible ( for me, it’s common) but one day I’m able to walk to the park and back, when the next day I will have trouble getting to the kitchen.  Please don’t attack me when I’m ill by saying “.  But you did it before!” .  If you want me to do something and ask if I can in a similar vein, I may need to cancel an invitation at the last-minute, if this happens, please do not take it personally.

Please understand that ” getting out and do things” does not make me feel better, and can often make me seriously worse.  Telling me I need a treadmill  or that I just need to lose or gain weight,   get this exercise machine.  Join this gym.  Try these classes……may frustrate me to tears and it is not correct.  If I was capable of doing things don’t you know that I would? I am working with my Dr and my physical therapist and am already doing the exercise and diet that I am supposed to do.  Another statement that this is” .  You just need to push yourself more, exercise harder”.  Obviously , FMS  deals directly with the muscles and because our muscles don’t prepare themselves the way your muscles do. This can cause more damage than good ,could result and in recovery time in days or weeks or months from a single activity.  Also, FMS may cause secondary depression ( Wouldn’t you get depressed).  If you were hurting and exhausted for years on end?   It is not created by depression.

Please understand that if I say I have to down/lie down or take these pills now but I do have to do it right now, it cannot be put off or forgotten.  Just because I’m out for the day (or whatever) FMS does not forgive.

If you want to suggest a cure for me, please don’t.  It’s not because I don’t appreciate the thought and it’s not because I don’t want to get well.  It’s because I have had almost every single one of my friends suggest.  At one point or another.  At first I tried them all, but then I realised I was using up so much energy trying things that I was making myself sick, not better.  If there was something that cured, or even helped all people with FMS then we’d know about it.  This is not a drug company conspiracy, there is worldwide networking both on and off the Internet between people with FMS.  If something worked we would know.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it.  I’ll take what you said and discuss it with my Dr.

In many ways I depend on you people who are not sick.  I need you to visit me when I’m too sick to go out.  Sometimes I need you to help me with shopping, cooking or cleaning.

I mainly due to take me to the doctor or the physiotherapist.  I need you on different levels your mining to the outside world.  If you don’t come to visit me then I may not get to you.  And as much as it is possible I need you to understand me.

I have given this letter to many of my family and it helps them understand.

I sincerely hope by sharing this, you the reader can share it and understand too!

Many thanks for reading.

There is always a good reason to smile I found 7!

My first reason to smile, recently I was recomended a new invention for me, a Dragon.

For those of you who do not know what Dragon is, it is a speak type program.

I am thoroughly enjoying being able to rest my hands, providing I speak clearly I do not need to worry about spelling.

I am sure there are plenty of people out there have sore hands as I have and I think it can change the way I do my work on a day-to-day basis! I will not elaborate on it too much as I have written a guest Blog for Nick Daws which will be published shortly. If you haven’t already and you are interested in writing then I would suggest you follow Nick and his blog at Nick’s writing blog.

Second reson to smile, the sun is shining, everyone feels better when the sun shines, well that is unless you are allergic to the sun, sadly there is a condition that needs folk to cover up away from the sun. I am not excately I sun worshipper, however I always feel my spirits lift when its sunny.

My idea of heaven is a stroll along the beach on a sunny day and hear the waves crashing down onto the beach, I love the sights and sounds and my dream would be to move to somewhere close to the country but also the coast.

Third reason to smile, the warmth of the sun streaming in my window helps my condition of Fibromyalgia. My mucsles do not like the cold, the tighten and sieze up, consequently causing more pain.

Today is a good day, I almost feel normal again, this has a good side and a apprehensive side, why you ask, well how much do I do today without making tomorrow a bad day. We have to learn to pace ourselves and listen carefully to our bodies.

I want to hoover, polish and clean as a downside to the sun streaming in, I can see all the dust laying in wait! I am trying hard to resist, I know to some, not doing the cleaning would be bliss, but I actually enjoy doing it and seeing my home shine!

Earlier this week, my occupational therpist arrived to access me using the equipment that been delivered that day.

Forth reason to smile, I can now shower independantly, Fibromyalgia can make you very stiff in the mornings . So trying to climb over our bath to shower was impossible without my husbands support. I now have a board fitted across the bath, which means this simple device allow me to get in and out independantly. I still struggled to bend sufficently to dry my legs without getting short of breath but I will work on that one.

Fifth reason to smile, Independance is so important to me and any individual. Lately my left arm has a tendancy to become numb and heavy, it does not hurt but does not want to work. This is a pain as I am left handed. Today however it is behaving. When I recieved my blue disabilty badge last week, I wanted to cry. Yes it means my husband can park closer now, so I do not tire so easily and less limping however to was admitting to myself that yes on my bad days I am disabled.

Sixth reson to smile, my home is filled with flowers, from daffodils, tulips to the exotic orchid, here in the UK, Sunday was Mothering Sunday, both my children sent flowers. I love spring, seeing the new lambs, piglets to the wild primroses, the daffodils swaying in the breeze, the cherry blossom starting to unfurl.

My seventh reson to smile although I could find many, I thought seven  a good number to discuss today. The love of my family and support of my friends, many I only know online, via Twitter, Facebook, writing forums and yes I even met a few through a slimming online club. They know who they are, we may not sit across from each other in my lounge but my world is opened up to share a coffee, a smile, a laugh and many vitual hugs are sent back and forth.

To me my resons to smile are priceless, How about yours? I would love to hear what makes you smile in a world than seems in chaos.

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.

 

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