From diagnosis to learning to live with Fibromyalgia

Archive for April, 2011

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.

%d bloggers like this: