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Old 02-09-2012, 02:28 PM   #1
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New and in need of support and advice

Hi, I have been reading through some of the postss here and decided to say hi to everyone. There is so much helpful information and advice and its nice to see such a supportive atmosphere.

I have had FM for less than a year and still find it difficult to discuss with people. Any advice on how to speak to friends about it? My closest friends know as I couldnt hide it from them but sometimes I just dont know what to say to people. It took a long time for my sister to believe that I didnt just need a bit more sleep or wasnt just complaining about a few aches as a lot of it is not obvious and I think because of some negative comments early on it can be hard to let people know about.

This weekend I was meant to be helping at a youth gathering but have found myself too run down to do much of anything. You all know how it feels (something I could not say to many people I know) - the physical pain, the exhausted feeling and the emotional baggage that always tags along, but the organiser who is a friend I have not spoken to about FM doesn't know these things and is rightly annoyed that I cant follow through with this commitment. But i dont know how to tell her about it. and feeling emotional just makes me think irrationally which never helps :-p Has anyone else been in a similar situation?

 
Old 02-09-2012, 03:49 PM   #2
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Re: New and in need of support and advice

Gosh yeah! I caught your heart here dear one. I was having so much trouble with my body the last 4-5 years of my career as an event planner (can you imagine doing this job with fibro - it was he**). I so wanted to tell my director, but I never did. I just hacked my way through, slept for 15 minutes in the filing room a couple of times a day, spent my lunch hours sleeping in my car, but I gutted it out. But by the time I retired, I was almost ready to collapse. I guess what I would say to you is you owe this woman no explanation. Her feelings can't be helped, but on the other hand you owe her no explanation other than the one you have given. I know that can be hard, but to go around explaining to everyone that gets annoyed with what "appears" to be your laziness will be a theme. It is so unfortunate. Maybe someone else will have better advice than I, but after 30 years of dealing with FMS, I simply don't care what people think anymore. It took awhile though.

It might be best for you not to volunteer if it can be avoided. FMS is unpredictable and you never know from day to day what you will be dealing with.

Kirstee

 
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Old 02-09-2012, 04:14 PM   #3
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Re: New and in need of support and advice

Hi bluemoondaisy, welcome to the board. I think we have all had the 'how do we tell people problem'. We all have a different approach, I don't mention anything unless I find it absolutely necessary. It is tough though when you have to disappoint someone, but just saying you are not feeling well and feel you could not do a good job should be sufficient. If there is further explanation needed it is up to you. Maybe starting out with something like, 'have you seen the commercials about fibromyalgia.....well they don't tell the whole story' and then mention the chronic fatigue and a couple other things. In the end you really are not responsible for what other people think and you can't control what they think either. Most people are really understanding if you give them a chance.

Let us know how it works out, there are a lot of caring and good people on this board.
Glojer

 
Old 02-10-2012, 09:54 AM   #4
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Re: New and in need of support and advice

Welcome!
I agree with the others. Emotionally it's tough cause we don't like people thinking we are lazy. But there really isn't anything you can do about that. We just have to learn to not let things bother us cause it just makes us feel worst. I go through this with my husband & sometimes it's really tough. But I can't change it. Just have to learn to handle it on my own.
Having fibro you have to change many things in your life. I don't vollenteers to help with something unless I know I could do it. This past week I have done 5 peoples taxes. But, they were are basic & easy. I also didn't do them the same day. It was all on my time It sucks to tell people no you can't do something, but you'll get used to it! Just try to not let it get you down.
Sometimes you also have to cut the strings. If I have a friend that just gives me a hard time, I don't need them in my life. I just cut the strings, keep my distance.
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~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 02-10-2012, 12:53 PM   #5
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Re: New and in need of support and advice

thanks for the welcome and advice everyone.

I have always tried not to let people down and help them when I can, but I guess sometimes it is unavoidable. Its frustrating to have to say 'yeah, you win, i cant do that'. chalk one up to the evil one i guess but i will just have to learn to say no more and hope people understand.

I was afraid of what my friends would think but I guess I just have to not care, if they are really friends then they will not think badly of me and if they do they are not people to have around me. Guess it is true that in adversity you find out who your true friends are and I know I have plenty of those.

It is really good to know other people have similar experiences to mine, I think it makes it easier to handle.

 
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kirstee (02-10-2012)
Old 02-10-2012, 02:20 PM   #6
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Re: New and in need of support and advice

It is very hard to say you can't do something when you are used to doing everything you can & not showing weakness. It won't happen over night but you can do it I have a "friend" I tried talking to about it & all she did was make it out to the doctors are wrong & it's my meds causing probs. This is of course the same friend that only calls when they need something. I guess we are more like aquaintances lol What she thinks doesn't matter to me anymore. It did at first but I've changed how I think
You really are doing great!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
Old 02-23-2012, 10:49 AM   #7
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Re: New and in need of support and advice

Hi,
I have 2 friends with fibromyalgia, and my best friend is very understanding. My problem was with my family. I had too many weird symptoms. One day I would feel great and be active and then the next 3, I'd be exhausted and in a painful flare. I bought "Fibromyalgia and Chronice Myofascial Pain" by Devin Starlanyl, I think that's how it's spelled. Anyway, the book covers every topic, including a great explanation of fibromyalgia and chronic myofascial pain and the difference. It covers everything. In her book "The Fibromyalgia Advocate," she even has letters to give to your individual physician specialists, and a sheet for them to fill out for SSDI. I did this and I got approved the first time I applied for benefits. Anyway, I used to spend a lot of time explaining my symptoms, and I thought I had to tell my husband every symptom as I was feeling it because I wanted him to believe me and understand what I was going through. I was so defensive because I didn't look sick. After he read the 1st book, he understood. And I didn't have to keep trying to convince him.
Rose

 
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