what do you all do

All your fibromyalgia experiences, questions and answers.

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what do you all do

Postby jayj » Tue Mar 18, 2014 12:56 am

hello this may seem a funny question but since you became ill and cant work what do you do to past time for me at the moment everyday seems to be the seem cant seem to take my mind of my pain been like this for 6 months i have a back problem as well as fibro, cant do much around the house my lovely husband is doing all the housework and shopping, my life seems to have stopped all i want to do is sleep or lie down i cant even drive my car for pain do any of you feel life as stopped.
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Re: what do you all do

Postby lilacgirlie » Tue Mar 18, 2014 1:50 am

To be honest I just try and do what I can, my partner does most of the housework but I sometimes find that if I have a bit of extra energy I end up doing something mundane like cleaning the bathroom or fettling the kitchen and then I'm tired out again. It's so flippin frustrating cos then I find that I avoid doing things I really want to do like arts and craft type stuff as I feel guilty. I seem to spend most of my time reading and sleeping and I hate it. :-?
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Re: what do you all do

Postby chezzle » Tue Mar 18, 2014 3:24 am

i worked full time up until april 2011, since then have not been in fit enough state, since being diagnosed with fibro it has got progressively worse over the last 3 or more years,also i have cfs :sleep: sometinmes i wish i could do what i used to but that will never happen again,i now try and pace myself each day or i will be good for nothing at all if i don't..sometimes it works..but not all the time!! luckily i share with a friend who is an ex army nurse so she understands what i am like! she has had to be my carer on more than one occassion, for that i am truly grateful. i do enjoy photography, art and cross stitch, when my hands don't hurt so much, also i enjoy looking on this site as it is very informative, and also helps me when i can't sleep like right now.!! :shock:
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Re: what do you all do

Postby jayj » Tue Mar 18, 2014 3:37 am

Hi I wish I could do the things I use to I can in my head but that just makes me feel sad I feel my life is upside down I can sleep in daytime but at night can be awake till 4 in a morning even if I go to bed early I still tired all the time im only 43 I feel about 80 im goin to try and put my mind to something not sure what
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Re: what do you all do

Postby petareynolds » Tue Mar 18, 2014 3:51 am

I'm one of the fortunate still working. I have three flexible jobs.

I work six hours a day Mon-Fri at a disability charity being their administrator (paid, not volunteer) and so far they have been very good at making 'reasonable adjustments'; my sick record their isn't as bad as some other people's because of this. At times I come in late or leave early, other times I just can't get out of bed and don't go at all. Access to Work have also made a great difference because on the days I can get out of bed but not drive they pay the taxi fare (all but about 60p each way I think) to and from work. They are also arranging for me to have my own electric wheelchair at work (I currently use a display one) so I can get around d whilst work without making myself worse.

My second job is as a nail technician so a couple of afternoons a week I do that; all of my clients are very understanding if I have to postpone.

My third job is as a private tutor (I used to be a teacher) and I do this some evenings and Saturday mornings; again I have very flexible clients.

You may think my fibromyalgia must be mild, but I can assure it's not. Without the Fentanyl patch I cannot even move my fingers, but the patch has literally been a lifesaver for me. I take Naproxen, Zapain, Duloxetine, Amiltriptyline, Omeprazole and Bendroflumethiazide just to survive. When I'm not surviving I have in the past been admitted to hospital and put on morphine as well and have carers come to me at home until I regain independence; now I have a Direct Payment which means I can go into a nursing home rather than hospital as I'm not 'sick' as such and I take my GP prescribed morphine and anti-emetic with me (as well as all my other drugs) and the GP comes to see me there. Then when I can use the toilet independently I go home and have a care agency come to me at home to help with getting up, dressed, washed, bathed, downstairs (if I didn't sleep on the sofa bed, which is common), fed and watered, and they leave me a pump action thermos flask full of boiling water so I can make my own hot drinks. They come back at lunch and tea time, then my daughter (18) and/or husband look after me in the evening.

When I am well we have an agreement at home where every day I load and unload the dishwasher, do the washing (but they have to carry it up and down the stairs), keep the kitchen generally clean and tidy, and have a little sweep round downstairs (all hard floors and long handled brush and pan), ie light but essential jobs because they work or are out long hours and without this the house would soon become a dump. Oh, and I have a hamster to sort out too. In return they take it in turns every other Saturday morning whilst I'm working to blitz the house with all the heavy jobs I can't do like deep cleaning the kitchen, bathroom and loo, dusting (because I have allergic asthma), mopping, and a good old tidy up returning things (that usually I've abandoned) to their correct homes.
A
All of this has been possible for one simple reason: I have learned, at home and work (and they don't particularly like it in either setting, to say, "No." At home I also go to bed when I want to, whether they like it or not, even like last week when it was 5pm one day and 3pm the next, but this prevented a 'nursing g home flare' and they are just beginning to appreciate this.

A big part of my success has been an understanding employer, and strangely losing three stone and getting in to 'OK' BMI has been the other defining success. (Try as they might, and claim to do so, they don't understand at home).

I hope this inspires some of you to access services available to you, as a disabled person, to find or keep a job. Access to Work are brilliant, and there is a disability job adviser in each regions job centre that will help you to find an accommodating employer. Last but not least, get some decent pain killers from your GP, and learn to say NO.
Location: South Bedfordshire
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Re: what do you all do

Postby Jenkins12 » Tue Mar 18, 2014 4:08 am

I used to be a Staff nurse , full time then part time but some couldn't manage . I got my union involved and soon realised that they couldn't re deploy me as I was getting worse and wouldn't cope . So I was terminated from my contract and that's it now , I spend my days taking hours to get washed and dressed without help from my carer/ pa and if I am well enough she takes me out . If not she gives me all care .
My world is very changed as many peoples is.
Cfs, fibro, Ménière's , arthritis, haemachromatosis, diabetes, pcos .
Trick us to pace , get therapy to help you cope, don't wollow in the illnesses and try hard to live as best a life as possible , so it maybe days in bed but there will be up times ...
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Re: what do you all do

Postby Jenkins12 » Tue Mar 18, 2014 4:10 am

Also if you need to rest then rest ... I do my family have to just get on with it x
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Re: what do you all do

Postby petareynolds » Tue Mar 18, 2014 6:31 am

Very true Jenkins 12. I too had to give up my career as a teacher but think because we are both strong willed and had very demanding jobs we are not ones to wallow.

Saying that, I had surgery yesterday, have been awake for the last four hours and my fibromyalgia is starting to flare and there's nothing the doctors nurses or I can do about it!
Location: South Bedfordshire
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Re: what do you all do

Postby Lindilou » Tue Mar 18, 2014 8:44 am

I also gave up my career. I was a Support Worker for adults with Cerebral Palsy and learning difficulties.
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Re: what do you all do

Postby kayterry » Tue Mar 18, 2014 9:43 am

Hi there, this is my first post as I am a newbie to the site and to fibromyalgia. I have now been off work for 8 weeks but am hoping to return soon. My boss has been great so I'm one of the lucky ones. We have arranged to discuss what I can reduce my hours to that won't be disruptive to the day to day running. I also have spondylitis of the lower back, type 1 diabetes, hypothyroidism and menieres, didn't think I could get much more at 45 years of age lol
I Would also like to thank the people who post to this site, I have felt quite comforted by some of the topics I've read and the support shown by others ( yes I joined weeks ago but only just built up courage to post) :-D
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Re: what do you all do

Postby Fibro Fi » Tue Mar 18, 2014 10:22 am

Hi Jay!
I've been wondering the same thing recently!
I have a list of jobs to do around the house but can't seem to get to them. I manage to go out each morning most days for about 2-3 hours. I walk the dog then go for a coffee. When I come back I'm usually too tired to do much else so I rest for a couple of hours then potter around the house and prepare dinner.
I've just started a blog so that stimulates what little brain cells I have left, lol! Take a look if you fancy a giggle- http://fionabwood.wordpress.com
Not sure I'm going to be up to much today. I've had one of those toss and turn nights! And, the window cleaner arrived at 8am!
Anyway, I hope you find some new hobbies to enable to enjoy your life even if it is restricted!
Take care. Xxx
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Re: what do you all do

Postby FluppyPuffy » Tue Mar 18, 2014 1:15 pm

I was medically retired almost 13 years ago, so now I'm an enforced lady of leisure, even tho I don't really want to be. I try to fill my FibroDays by being a domestic goddess, as well as being walked by :dogrun1: :dogrun1:

PreFM I worked in banking, doing everything from Chief Cashier thru to Personal Adviser, altho the area I really enjoyed was dealing with the Overseas transfers/finances :( :( :( I still miss aspects of what I used to do, altho I definitely don't miss being targeted on the number of products I had to sell each period :girl_moon: :girl_moon: :girl_moon: :girl_moon:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: what do you all do

Postby Lindilou » Tue Mar 18, 2014 2:59 pm

Fibro Fi wrote:Hi Jay!
I've been wondering the same thing recently!
I have a list of jobs to do around the house but can't seem to get to them. I manage to go out each morning most days for about 2-3 hours. I walk the dog then go for a coffee. When I come back I'm usually too tired to do much else so I rest for a couple of hours then potter around the house and prepare dinner.
I've just started a blog so that stimulates what little brain cells I have left, lol! Take a look if you fancy a giggle- http://fionabwood.wordpress.com
Not sure I'm going to be up to much today. I've had one of those toss and turn nights! And, the window cleaner arrived at 8am!
Anyway, I hope you find some new hobbies to enable to enjoy your life even if it is restricted!
Take care. Xxx


Great link, will read this evening :-D
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Re: what do you all do

Postby painprincess1 » Tue Mar 18, 2014 5:17 pm

I think the first thing to get over is to stop thinking of what u used to do,I no it's early days for u yet but u really have to learn to let go of yesterday .and take one day at a time. Give yourself time to lick your wounds so to speak .then say to yourself ok today I think I can do that job . Set yourself one job a day until your meds are sorted and you find what works for u. Then maybe say today I'm going to do two little jobs.what they are is up to u.for me I find I'm worse if I'm sat still.i had to wait in today for a new sofa and the sitting around has really made me ahce like I have flu.i been home to days I. A row and feel dead.it nearly kills me to get out the door some days but onces I get going I feel better mostly.imdo have times when my body shuts down and I can't even talk but with 4 children I can't go to bed lol. But I do go at 8.30.dont always go to sleep but I'm resting.then maybe onces or twice a week I stay up till 11 ,why will it helps me sleep and makes me feel apart of life.even if I'm just watching a crappy movie.i also find when I feel like I do now I could easy give up but I no to take my tramadol and wait till they kick in believe it or not I hate the flu feeling more then the pain. Never give your life up to fibro.change it yes but never give in xxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: what do you all do

Postby Billsmum » Tue Mar 18, 2014 6:15 pm

I worked full time, on a hospital ward until I retired, spent my days off, catching up with housework. Now I'm retired I do volunteering work at a National Trust place. When I was working, I was so tired all the time some days were absolute agony don't no how I got through them sometimes I think I was in a worse state than the patients. Now I enjoy my one day a week, gets me out, meeting new people, keeping my brain active working at my own pace, I really enjoy it.
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