quality of life

All your fibromyalgia experiences, questions and answers.

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quality of life

Postby Janey63 » Tue Aug 26, 2014 8:21 am

My husband takes the car every day for work. We live in a small village and only have one bus an hour. I don't feel able to get the bus most of the time. He is considering getting a bike for work but then said but you never go out so I said its because I don't have the car! He then queried that if I can go Out ' then I could work. I have tried to explain about my good and bad days....
Anyone got any ideas how to deal with this?
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Re: quality of life

Postby Garyl » Tue Aug 26, 2014 8:52 am

So difficult Janey to get people to understand, i suffer badly with Fibro and i have a similar problem in the fact it is classed to effect mainly women, i get asked how can you have a womens complaint when i explain that yes majority of sufferers are women, but mn can get it to and is a god awful illness, i would willingly swop their health for mine, they soon back down.

I have to rely on buses to get about as do not drive, i have been up just 30 minutes washed and dressed and am as bad as i was before i went to bed last night. People do not understand how we suffer wish they could, you need to make him understand that everyday is different for us sufferers and no two days are the same, I do have a few people now who are begining to understand.

Your husband needs to read what is on the site about how the illness effects people differently and listen to you more on the bad days, i had a week away in the highlands of Scotland last week and felt a lot better then normal as is different air and lifestyle there.

Just ask your husband to read about the condition and realise their are good and bad days and also bloody awful days
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Re: quality of life

Postby migrembe » Tue Aug 26, 2014 9:24 am

It is very very difficult for others to understand. It is also very frustrating for them as well as you. I am sure he will feel bad for being a little mean to you. As for you if all you can do is get out of bed and get dressed then try and keep doing that as staying in bed day after day really doesn't help.
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Re: quality of life

Postby rich44 » Tue Aug 26, 2014 10:25 am

The way I usually try to explain it is by saying:

Imagine a time when you had really bad flu, not a cold but bed bound because you hurt everywhere, really intense pain everywhere.

That's me, on a good day. If you can relate your level of pain and fatigue to something they have experience of it tends to make them think a bit more.

I'm lucky as my wife suffers from pain too so understands mine. We're in the same situation except I was taking the car and this time of year there's a better service from the coast hopper but soon it'll be hourly or less.
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Re: quality of life

Postby iblinkin » Tue Aug 26, 2014 6:39 pm

Hi everyone! I am also a guy with this illness like Garyl and can say this is not a womans only issue and that it's more prominent in women but I'm sure the pain and discomfort and misery is equal! I also had the same problem getting people to believe me when i say i cannot do anything on certain days and how difficult it is on good days... good days? That's most normal peoples bad days so i say ha to that! Let them try our bad days for just one week.. betcha they change their mind then!
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Re: quality of life

Postby Ribbonsrabbit » Wed Aug 27, 2014 10:32 am

If you can get PIP they might pay for a car or the money could go towards taxi fares or a cheap runaround.
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