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The UKFibromyalgia Forums • View topic - Everyday life with Fibromyalgia



Everyday life with Fibromyalgia

All your fibromyalgia experiences, questions and answers.

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Everyday life with Fibromyalgia

Postby BlueBerry » Thu Jan 24, 2013 6:09 pm

Just been thinking and wondering how do you all out there with this illness cope with not been to work and do basic things. I have a carer my mum who look after me does the cooking and cleaning and run to shopping in cold weather like we have and I can not get out side or I will be come more ill.

It sort get me now after few years not working and try deal with this illness and over illness on top things my depression is pretty all time low.

anyone got any advise also hobby’s what good hobby for fibromyalgia some stupid website said dancing and written but type is hard :crazy:
at the best times. Guess I am get feed up not working and be around people and miss air out side heh look freezing out there lol :lol: :lol:
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Re: Everyday life with Fibromyalgia

Postby bekwey » Thu Jan 24, 2013 6:23 pm

Hi.
i like doing the tubs in the garden. Most of the time I can stand over them, but if I am having a bad time I can't . think I am going to get some of those wheels you can get for them,so I can sit and do them and push them back where they belong :) At the moment it isn't good, but they can be a pleasure to look at summer and winter :) My main hobby and greatest pleasure though is my dogs. No matter what you can or can't do they are there and there is always something from playing ball to grooming, and of course, you get the best friend ever <3 they also get you out, even for a short time every day, which is good and to me very important. I have always been an outside, active person - well was :) xx
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Re: Everyday life with Fibromyalgia

Postby tracyclarke » Thu Jan 24, 2013 6:29 pm

Hey Blueberry

I guess we all feel like you some of if not most of the time. I got diagnosed about 6 months ago but suspect i have had the condition for some years. I gave up work back in july what keeps me sain and gives me a little bit of sunshine in my otherwise painfull and sometimes very lonely life, is darts. It gets me out of the house, i get to spend time with my friends and socialise, the best bit about it is your sat down most of the time only need to stand when your playing for about 5 mins.
I know darts is not for everyone, but what im trying to say is, find something that you can outside of the home with friends family, take up a little hobby, even if its a knitting circle, book club or just a coffee morning club or start one of you own.
NO mattter how bad i feel or how bad a day i have had, even if i have to be draged out of the house (and believe me i do) i am sooooo glad i got out of the house. I have been open and honest with my friends from the start about my FM they know and understand my limits and are fantastic, they even let me off scoring sometimes hehehe.
Is there a local FM support group you can attend or even a chronic pain group, im sure they would welcome you with open arms and will be a wealth of knowladge as to whats available in your local area.
Getting out and about will help with your depression.

good luck hun and gentle hugs xxx
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Re: Everyday life with Fibromyalgia

Postby shazq » Thu Jan 24, 2013 7:47 pm

HI Blueberry
Have you spoken to your gp about your depression? many of us suffer with it and its no wonder with us being in pain 24/7.
your gp will be able to help, can you talk to your mum about it as well? you might find it helps you to get it out. :hugs:

With hobbies i know lots of people like to make cards.
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Re: Everyday life with Fibromyalgia

Postby denys » Fri Jan 25, 2013 12:29 am

Maybe you and your mum could start a hobby together BB what about card making, its something you can do for a short time and leave it for a bit then go back and carry on so isnt too difficult to get started with.

What about painting, thats another thing you can do for short periods of time and go back to when you can. I agree with Shaz I think you ought to speak to your GP they might have ideas of what is on in your community that you or you and your mum can visit and join in

I hope you feel better soon :hugs: :hugs:
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Re: Everyday life with Fibromyalgia

Postby LouLou » Fri Jan 25, 2013 12:00 pm

Hi Blueberry

I'm sorry to hear you're having a tough time at the moment, though I am glad you have someone around to help you!

I love reading but when FM appeared I would struggle to hold books up to read, even small paperbacks and magazines. Then for Christmas my other half got me a Kindle. It's so light and I can prop it up without having to hold it so I can still read to my hearts content lol. Plus books are slightly cheaper if you download them so that's another bonus.

As for hobbies, I think Shazq and Denys's idea about making cards sounds fun. I have a few friends who do that and they are so unique to anything in the shops. Anything with small crafts like making jewellery/sewing if you are able to do things like that with your hands?

You said you miss the fresh air. I know how the cold can make things worse so when I've had times where I'm in a bad flare up and it's cold but I'm dying for some fresh air, I'll either open the window and sit by it taking a few deeps breaths in or open the back door a bit and do the same. If the weather isn't so bad just standing or walking slowly round the garden works wonders! I'm not sure if you are able to walk short distances or not? But if you do want to get out just wrap up in lots of thin layers to keep warm. I've even been known to go for a walk with hot water bottles tucked in my coat lol.

Take Care

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Re: Everyday life with Fibromyalgia

Postby BlueBerry » Fri Jan 25, 2013 4:24 pm

Wow thank you for all the messages that really made me feel much better.

I am sorter in a rut at the min, I sort off didn't go much into it when I post on forum I rust what i type of about hobby’s and deal with this illness. Been have long chat with my mam last couple of days and she knows how I feel even my gp does try to get me sorted with a new therapy which i will be sorted out next month.

Thing i forgot to say is just after new years days I was rush into Hospital and was in for 5 days I am now deal with a new form of illness no idea what well sort have idea that it to do with my reflux I now have trouble eaten and the bathroom is worse then ever this is not IBS at all. Guess all run about after eaten to bathroom got me down and my mam has said best for me to stay inside same as few my aunty on phone have said.

So it been 2 months now since I have been in and final i said my mam going out just to local shops next week and try feel a bit better, Over thing I have to get is a stool for shower now have problems with standing to long.

thanks you about listing hobby’s I myself was before my illness took hold me an drawer/ illustrator and learn to be a an animator . I think not drawing has really upset me these past 4 years now and over thing about not working again is sink in. Over thing this week is memory of my dad who died this week over 7 years ago in hospital maybe take it toe on me.

(Hope don't mind long post nice get out on here) So hope get out next week and I got last year a tablet I so love it I got 3 :lol: :lol: well 2 , third one not is good heh they keep me busy. Guess I need stop wiorry about not been able work and try get this new illness sorted wait for letters for camera going down my neck and pictures taken. I am so glad I got my mam and place like this forum keep my mind going heh.

Oh I forgot say also i use to do tapesty but had gave that up too , reading love terry pratchet when I was in hospital I couldn't stop reading it :lol: :lol: weird I always got back my head about stupid atos thing I got do every year cause I am wrag group, scared get little bit better in case i lose my benefit how weird that :roll: :roll: :roll: :roll: I should do what i want and not what they say or make me feel :nono: :nono: .

But like my mam say take a day at a time not look forward !! heh or stress in my case :-D :-D

But thank you for wonderful advise going try take a day at a time and try draw again some day ;-)
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Re: Everyday life with Fibromyalgia

Postby denys » Fri Jan 25, 2013 4:55 pm

Good for you BB baby steps are always the best way for us, going to the shops might just make you a little brighter. :fingerscrossed: for a nice dry day so you can get some fresh air :hugs: :hugs:
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Re: Everyday life with Fibromyalgia

Postby LouLou » Mon Jan 28, 2013 10:56 am

Hi BB

I agree with Denys, the main thing is not to try and do everything all at once! I used to do that and it made me worse and got me really down thinking I couldn't do very much when in reality I was just doing too much too soon.

Pace yourself, set small targets for a week and if you manage fine then set a slightly bigger target for the next week and go from there. But even just a 5 minute walk to the shops helps lift my mood especially when the sun is out and it's nice to get some fresh air.

I love reading too, though I've never read Terry Pratchet before - I'll have a look on my kindle later and see what type of books he writes.

Don't worry about long posts either, sometimes just getting things out there can be a massive help and that's what we are all here for.

Take Care
xx
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Re: Everyday life with Fibromyalgia

Postby jennthefunkyranger » Mon Jan 28, 2013 11:02 pm

I love reading too, and I've toyed with the idea of a kindle for a while, and that it would be easier to hold when my hands hurt has never occurred to me.

I love reading most things, but when I'm struggling to concentrate, chick lit is best as it's something I can still follow if I'm not really paying attention
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Re: Everyday life with Fibromyalgia

Postby LouLou » Tue Jan 29, 2013 11:12 am

Jenn I definitely recommend a Kindle!

I don't know how I coped before I had mine lol. It's not the most recent model as I think there are a couple of versions out now, mine is one of the older ones but it does the same as the others. You can also get cases with lights attached or I just got a cheapie £1 bendable clip light for mine from Tesco lol.

It's so light plus you can prop it up when you can't hold it and the pages don't fly all over the place lol. I agree about chick lit though as I'm the same. I'll often read the same page twice and not take a word in lol. I especially love Sophie Kinsella. We have to have some pleasures in life having FM and reading is definitely mine lol.
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Re: Everyday life with Fibromyalgia

Postby BlueBerry » Sun Feb 03, 2013 12:12 pm

Been while since i posted heh

Well I had two days out last week and I really enjoyed them but cut long story short I pull my back in and my hip killing me I can't bend now so mam got help me around the house.

First day I went out I had worse anxiety just wait at bus stop and been on bus full people set me off so i wasn't out for to long but second was wonderful I even went into a shop on my own mam was little tried so let her sit out side but she found day was really cold same as me. (Why so hard find size 16 in h and m :lol: :lol: )

guess I just got gave it time and try not do to much why day you go out you feel great next it you feel so crap and in pain damn this illness :nono: :nono: :nono: :nono: .

Oh and about kindle I got tablet instead android one great you can read sufe net and play games with lots of apps :-D :-D Oh and terry pratchett I forgot to say is sci fi Fantasy basic Disk world heh :-D once i started read it I get lost in it. :-)
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Re: Everyday life with Fibromyalgia

Postby viota » Sun Feb 03, 2013 12:36 pm

well atm im bedbound :( My fibro has gotten a lot worse over the last couple of months my mobility is restricted. but i was sky in bed and i have a laptop to keep me entertained. unfortuantly i have no-one to help me clean and im unable to do any but i do my best
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Re: Everyday life with Fibromyalgia

Postby Pepperty » Sun Feb 03, 2013 3:16 pm

I bought a kindle on a whim, best £40 I've ever spent :-D I used to read tons, but got out of the habit...probably because my grip is poor and my hands tingle constantly (thats why my typing is wrecked Im sure!) Now i've hundreds of books on my kindle and it goes everywhere with me! I even wander about the house with it in my hands. p.s So light, can change text size to suit, no screen flare - its ideal.

I too can't imagine not having my kindle, my cable TV and my internet. Life would be unbearable. Between the three I can keep myself entertained and can choose if I want to communicate via the internet, lose myself in a book or watch hours of stored TV programmes from my sky hard drive.

Im sure to most of us, having a hobby is a lifesaver - I enjoy graphic design and website development so I keep my poor rusty brain working at full throttle learning new skills. I love that I can go at my own learning pace and re-practise focus (which can be poor) I think having a hobby is important and can give you a sense of purpose, I cant do my crafting any more (knitting, x-stitch etc) But I can design using photoshop, making blends, wallpapers, avatars, animations etc and I love to web build with wordpress, joomla, html and php coding....its a great sense of acheivement when I succeed with newfound skills, it distracts me also from feeling useless (over the physical things I can do no longer)
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Re: Everyday life with Fibromyalgia

Postby jennthefunkyranger » Sun Feb 03, 2013 7:35 pm

I bought a tablet on KGB Deals the other week, which is currently waiting for me at the local sorting office (well, I assume it is, can't think what else would need a signature!), so I will try that as a kindle for now, though I expect I might have issues with the screen glare reading in bed.
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