What to do

[ldjboothby]

Haven't been on this site long,and try and remain upbeat,but have had this condition for 30 years and aspects of it before then. Have been through a divorce to a man who wasn't bad just didn't understand and watched my boy's grow up not understanding,remarried and nearly ended up divorced a second time---have learnt somethings. The main one is that it's crucial that people understand the condition and they don't----would it help to have easy to understand. printable handouts to give to family and friends and how would we achieve that on this site---personal stories (no names mentioned)---including an edited one from the partner today may help--he was so right --have to see both sides of the story--please post your ideas and we can discuss them with the people who run this site---don't want to see people's lives mucked up unnecessarily

[lynz]

that sounds like a good idea ,

[ldjboothby]

thank you Lynz---keep trying but not sure I'm on the right track--don't find site easy to use but that's probably me

[Hidden in reply to ldjboothby]

hi i would be happy for you to use my blogs there s quirt e a few lol but yes i know what you mean it is hard a memeber on here did ask for all our stories few weeks ago he was gonna write a bookbut he left a blog earlier in the week saying he was not coming on here anymore hope he returns he was a big character on here but i sent him 3 huge pieces and some other memebers did too so i dont know perhaps ther is something we could compile to give to people love to you diddle x

[sarah-d]

i think its a great idea to get together or even just use the blogs (with permission) and put them in a booklet but i also agree the stories should be from both sides id be happy for you to use any of my blogs and questions

[Hidden]

thats a great idea you can use anything Ive written

[ldjboothby]

Thank you all, ChristineEls maybe you know how to use this site better than I do but I'm quite happy to trawl it and put something together for your inspection----strikes me and always has done that support is as necessary as medication (that's necessary),so anything that helps,particularly partners has to be useful.

[ldjboothby]

Sorry had no sleep last night-- so a bit zapped---can people print stuff out from this site? What we want is a simple -easy to understand guide about the condition and a way that acknowledged the impact that it has on people in a relationship with us,keep me posted with ideas

[Sassi]

Hi,

I saw this on another site. It was from a lady in a Scottish Support Group I think. But she had much the same idea and apparently hands this out to everyone she meets. I have copied it and have not edited it at all.

"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."

I think this letter says almost everything. In my case I would probably add the next part. Others may have others that are slightly different. When I read the stories of others on here, I find myself nodding and thinking, 'I'd forgotten about that!'.

My fibro was started off – I think – by a bout of Bornholm’s Disease and a fall that cracked my coccyx. So, I would add that I may be able to start walking slowly and reasonably well enough but after just a short while I am unable to catch my breath. This increases the pain all over. I say ‘increases’ because you must realise that when I start walking I am already starting off in pain. Any degree of physical movement at all - and that means from getting out of bed, brushing your teeth, turning on a tap etc. etc. increases my already constant pain. The breathlessness just makes things worse.

Maybe we could use this letter as a template.

kind regards Sandi

[ldjboothby]

It certainly sums a lot up and would form a good basis with maybe space at the end for people to add other complaints if they have them, I'll have a go in a day or two to put some thing together ---can't find how you can print from this site--take care Linda