Fibro and life

All your fibromyalgia experiences, questions and answers.

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Fibro and life

Postby LoisF » Tue Dec 03, 2013 1:02 am

Does anybody manage to maintain a life with Fibro? Am I just an idle b**ch? I'm finding more and more that I'm having to give up activities that I previously enjoyed. My life is a cycle of feel halfway human, do something in twice the time it used to take, end up floored, pain, cancel all planned activities.
I finally met with one of my closest friends last week after us not meeting for 3 months due to my having to cancel so often.

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Re: Fibro and life

Postby whoami » Tue Dec 03, 2013 7:43 am

Lois...first of all get it out of your head that you are an idle. B****! Honestly , you know you are not.

Lois, I am 56 and have been dealing with fibro now 26 years come feb. How long have you been suffering? I ask because after a few years we adjust.

Lois, we can maintain a normal life. It will be a different life but we can still enjoy, participate and most of all live

I can relate to how you feel right now. I am just coming off a period of time ( I hope), for 2 months I have had no interest in going out. In fact a friend who has fibro has stopped trying to call and I need to contact her to explain what I know she will understand.

Lois, through medication, help from our Dr, but mainly ourselves we can live a productive, enjoyable life.

Now in saying that, I have not worked for almost 26 years. However, I have learned to listen to my body. I have learned that I need to push myself but respect myself to stop when needed.

Lois, I still try to enjoy everything I did before fibro. I have had to make big changes to do so. I am slower, I do things differently and I have lowered my expectations.

I have also changed my attitude. Fibromyalgia is not who we are and it does not define us.

The days I feel like it I will garden for a few minutes. I may go for lunch or shop. I may travel and go hiking. I will do these things but in a new way. Instead of doing all my garden or cleaning my house in one day, I may only spend a few minutes doing so but in those few minutes I will enjoy life, I will live.

Lois, it is hard having fibro. You are also a special needs mum, that alone is a full time job. If you can talk to your Dr, tell him how you feel there may be some other medication/treatment that can help.

Lois, don't judge and be so hard on yourself. You owe no explanations to anyone why you feel down some days.
Put your health first,look for the bright side of every situation. Lois...Live!

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Fibro and life

Postby csangel » Tue Dec 03, 2013 10:38 am

Hi LoisF,

You're not idle! You're in pain and tired and struggling to manage day to day (and you're not alone :yikes: )

I've recently attended a pain management course and the key points they really tried to drum into us were preparation, planning and prioritising. You need to try and lessen the cycle of feeling better, doing too much and then feeling like you've been run over by a bus. Try doing one thing, eg. iron a shirt, then see how you are the next day and if that doesn't affect you try doing two... do you see what I mean?? :sleep:

It means you have to take the time to work out what you are capable of, because otherwise you end up not wanting to go out, not wanting to see friends, because the only result you can see is that you end up in a heap afterwards :crazy:

Is there anyone you can ask to help you out? Maybe arrange for a friend to come over and do a bit of housework or washing up in return for being able to spend some time with them? Or any other way of doing things differently so you don't crash and burn after?

It takes a lot of getting used to, and I'm not sure any of us ever feel like we have complete control, but you might find it helps to try and think of different ways of doing things. There is a grieving process for the person we used to be and the things we used to do, but it doesn't mean we can't do things differently, and that we're not the person we used to be. You're still you, you just need some help to remember it.

Take care, hope you're having a better day today :-)
Health is not valued until sickness comes. ~Thomas Fuller
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Re: Fibro and life

Postby LynnyG » Tue Dec 03, 2013 5:40 pm

Hey Lois
I know exactly how you feel, i've only been diagnosed since Oct but have had this for 3-4 years. I am at the lowest i've ever been, every day is a struggle, the fatique, pain and fog are making it impossible to do anything! On top of this I cant tolerate any of the meds ie: gabapentin, pregablin, amatriptyline, duloxotine,tramadol, co-codamol and the list goes on! I take a very small dose of pramiprexole for restless legs, I don't sleep and feel I'm on my own, my husband is brilliant but I know he's also grieving for the old me. I just wish it would all end. My work are also in the process of terminating my contract as I have been off since June.... Sorry for the rant, hope I haven't made you feel worse. : :-D
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Re: Fibro and life

Postby binty » Tue Dec 03, 2013 5:59 pm

ditto to all the posts above....
it's a horrible illness that is not clearly understood but one thing i have found for sure is that this site and reading other peoples posts and struggles has made me realize that i am not alone or worthless or idle.
I too am not the person i used to be, i no longer work, and my social activities have plummeted but i have learned to take each day as it comes and on better days not to push myself to hard because i no it will knock me for a few days
whoami says it all really....... don't give up
hope you are feeling better :-)
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Re: Fibro and life

Postby dejay » Tue Dec 03, 2013 6:16 pm

hi Lois, I have had fibro for twenty years , and I remember when I felt like you, but you will learn how to cope ,and your dr will find some medication that will help, does it realy matter if you don't dust today, does it realy matter if the dishes pile up, I have learnt it doesn't, I hope things get better for you soon,lol
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Re: Fibro and life

Postby debsmith » Wed Dec 04, 2013 1:14 am

Hia lois

Your most definatly are not idle at all!!!! Having this cruel condition is awful wouldn't wish it on my own worst enemy!!! You have a lot to cope with awwwww I've not long had diagnosis but think I've had it 4 good few years don't beat ur self up! I love a clean house! But when its not done I've stopped stressing about it I must admit I am lucky my daughter does most of it as I still work at min but feel NOT 4much longer I'm in tears after work + cannot move!!! I love my job and yeah guna b uppseting when I call it a day but I must listen to my body its saying enough!!!! Dr,s still playing with my medz but no matter what I'm on it only takes the raw edge off :( don't b so hard on yourself it will just agrivate ur fibro have u got any 1 that can give u you time? Even if just having a bath in peace or read a book? I feel a bit like u tbh as my knee really bad exray thursday re: rhummatoid arthritis possibly or infection it is hard esp when u go threw stages of I want to do that but.........actualy no I can't I feel may b cuz we are ladys we r used to housework/kids/cooking etc I get realli frustrated and a crabby mare my dear daughter understands then pulls a funny face and feel okay again look after your self sending hugs xxxx :grouphug: :flowers:
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Re: Fibro and life

Postby painprincess1 » Wed Dec 04, 2013 10:19 am

Hi love, I think the bit that u must do is let the old you go and get used to the idea there's a new you.sure you maybe slower, you may even be bigger lol. But it's still for me and I no a few others we dare not stop.sitting still is a killer but it's the best relief I have found so far.dont run away with the idea I'm racing around like a horse on steroid .im not I potter about I'm only 41with three teens and a baby. And some days are a killer ,most days are really.but without the kids I'd be in bed all day. So yes there's a life a good one.there's ppl out there worse then us .i always try to tell myself that as it's true and helps me battle on .hugs
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