Understanding

All your fibromyalgia experiences, questions and answers.

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Understanding

Postby SchroedingersCat » Fri May 13, 2016 10:21 am

I'm constantly saddened by how many posts I see on here from folk whose family and friends appear to be utterly incapable of making allowances for the fact that their loved one/friend has a chronic illness over which they have no control, which impacts on their ability to function from one day to the next and lacks consistency.

I'm very lucky, nobody gives me grief about it.
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Re: Understanding

Postby tazzajay 1 » Fri May 13, 2016 11:43 am

You are VERY lucky indeed.I only have a few people around me who really 'get' this illness.
:cry:
"Judge not unless you judge yourself"
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Re: Understanding

Postby fatalrazkaz » Fri May 13, 2016 1:40 pm

Yes, I am very lucky too as my husband understands this illness inside out and we have only been together for 8 years. My children (24 & 20) also understand it very well though sometimes they seem to forget the impact some things have on me (like tidying up their things). I have had this illness for over 23 years but was only diagnosed in 2012. My husband (met in 2007, married in 2012) knew something was wrong with me so when I was finally diagnosed I'm sure it made it easier for him to accept. I think more people who suspect they have Fibro need to insist their Dr's refer them to Rheumatology for a proper diagnosis. If they won't then they should find a Dr that will. In a way I was lucky that I had never heard of Fibromyalgia before I was referred to Rheumatology so my husband never ever thought I was making it all up from something I had read about online because neither of us had ever heard of it before diagnosis.
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Re: Understanding

Postby Queenie_70 » Wed May 18, 2016 12:19 pm

HI,

I have a mother and father who have come around to understanding, but only after I had two or three flares that left me in bed for more than a few weeks at a time. My father sat at my mother's computer and did his own research and actually hooked me up to a few good articles, though exercise was the key to most of them. My sister has absolutely no clue, and I don't think she really cares, she lives in Tasmania and is busy moaning that we haven't gone to visit her. My brother and his partner Julie know about it, but they live in New Zealand, and have not seen its impact on my life yet. They are kind when they hear I haven't been well, but again, I don't think they know too much about it as they both have health issues also.

Most of my friends live in the States, but one of them has fibro, but still manages to work as an urgent care nurse in a high volume ward. Just yesterday, in-fact, she told me she gets about one bad day a week, but I am still recovering from a bed ridden flare that lasted three weeks. I have been out of bed for about three weeks since, but have to sleep about 16 hours due to pain and fatigue still. I was on valium for a week of the flare, but they wouldn't give me anymore because of the addictive nature. I am sure I could get addicted as it made me sleep and not care about the pain, how is this a bad thing??? lol

The few friends I have in England are miles away and don't really see me, they just know I'm not on-line for a while and then I'm back. It is a roller coaster and none of us can guarantee what will happen in the next hour, let alone the next week. Support like this site and groups, maybe the answer for those who don't have the understanding of family and friends. xx
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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