Letter to a Normal

[MKMale]

Hello All, I have had this for several years now and still give it to some people who I think need it. I cried for ages when I first read it because someone else felt they same as I did. Sorry if I'm duplicating if its on the site already.

Hope it helps in some way.....

Having FIBROMYALGIA 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 FIBROMYALGIA and its effects, and of those that think they know, many are actually mis-informed.

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 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, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t 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 doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, "Oh, your 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 ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FIBROMYALGIA does to you.

-Please understand that FIBROMYALGIA is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll 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 then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing 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 loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FIBROMYALGIA deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FIBROMYALGIA may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off or forgotten just because I'm out for the day (or whatever). FIBROMYALGIA does not forgive.

-If you want to suggest a cure to me, 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 one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FIBROMYALGIA 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 FIBROMYALGIA, 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 doctor.

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

I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you.

...and, as much as it's possible, I need you to understand me.

________________________________________

[mooo1967]

Read it before - but it speaks volumes. Anybody with fibro in family or friends should read this to try and get an idea of our day to day battle. Big hugs x

[MKMale in reply to mooo1967]

Thanks mo,I agree it speaks volumes and also pass it on to anyone who don't understand our struggles. x

[fbwoman]

oh my word, not read this before. Even my own husband does not understand fibromyalgia, in fact he barely acknowledges its existence and yet it affects every minute of my every day... i will send this to him and hope that he will really take it in. Thanks MK xxx

[MKMale in reply to fbwoman]

No need to thank me fbwoman, your more than welcome, I'm glad to know that it might help some else as it did me even if only a little bit.

I know it helped me get it across to quite a few people in my life. As mo1967 said after I posted it, it speaks volumes :).

Xx

[sue32]

I hope you don't mind but I've shared this on Facebook!! It speaks volumes!! XXXX

[Cookie72 in reply to sue32]

Hi Sue32 I'm new on here so not whether its right to just jump in and answer things, could u help me here, also would u be kind enough to tell me how I post mkmales post on FB, as u say it speaks volume and is something I have always wanted to say but could never find the right words and there are plenty of misguided people out there especially on FB that don't seem to understand our condition, thank you for your help and poss friendship xxxx

[sue32 in reply to Cookie72]

This is the way I did it!! Highlight the whole letter, copy and paste it onto your facebook page!! I found it easy and I'm no techno fiend!! Hope you can do it, if not, get back to me!! XXX

[MKMale in reply to sue32]

Hello Sue32, No of course i don't mind you sharing it, the more people that get to see in the better I think and as it's Fibro awareness even better. I got it from a Fibro site years ago.

Glad you like

x

[Cookie72]

Yes they are right it does speak volumes and is what I have always wanted to say but couldn't find the right words how do I , with your consent MKmale , post this on face book there are plenty of people I would like to make aware and they say all the things u have stated, like u did it yesterday why can't u do it now, well it doesn't work like that, it's even affecting all my teeth, to the point of leaving this world behind, I'm new to this site, wish I had thought of doing this before would be nice to be able to talk to someone with same condition and understanding, thank you gentle hugs to u all xxx

[MKMale in reply to Cookie72]

Hello Cookie72, Of course feel free to share, as I said the more who get to see it the better eh.

I'm pretty new to the site also, but also understand what you mean, I know the people I have met so far on here all understand, and helpful and I'm sure you'll find it to.

Hope today is a little better for you today than yesterday

x

[Cookie72 in reply to MKMale]

thank you MkMale, I think its going to take me some time to work out how to get around this site,and how things work...how r u feeling today, its a real bummer of a condition isnt it, I guess like you I have it all over my body, in all four quadrants as the doctor said..Ive had it amongs't other conditions arthritis of the spine being one of them since I was 11yrs old, but then they diagnosed it as Muscular rhumatism, wasnt till 1995 that they done all other tests and diagnosed FMS, has it started to affect your teeth yet, u take care nice talking and hope u having a little relief today x

[Sharolina]

I have seen something very similar to this before, but it has been added to and personalised a bit more. It is still brilliant! And thank you for posting it, and to whomever wrote it.

S x