Fibromyalgia Action UK

new to this site

hi im lynn

i have had fibro for years now

i feel my illness has got a bit easier to deal with

at first for a couple of years it was really hard but i have found with painkillers which i try not to take every day and anti-depressant which actually do help with the pain do make things easier ...i had to give up my job which i loved as a carer ..thats the worst thing cos people think cos you look well you feel well and theres nothin wrong with you...but its too difficult to hold down a full time job..even driving can be you feel like a loose end cos you use up all your energy just tidying up the house doin washing etc....but its very frustrating cos you want to go out and work...

i feel ive lost my identity havin this illness...thats the worst thing....and i cant get it back!!! also you are stuck with it its not like its goin to go away....anyway ive done my moaning for the day...hope you all are happy and keeping as comfortable as you can ..if you want to ask me anything please fire away....thanx for reading my post.........lynn

2 Replies

Hi i to am a carer iv cut my hours right diwn to 16 i tried mot working as you say the pain and everything else that goes along with this hortible condition makes life so hard, i have days where u think how long can i carry on with this, but i need the money, i tried dla and was refused i had a visit frm a dr i told her all the problems i had on was on a bad day when she visited, but still hot no joy, i find it so hard somedays to get myself up and out, i know no other job so change in a career at 51, its not gonna happen, this site is great at least i can moan and u all understand lol


Hello Lynny and Crissy

Please try again for DLA and appeal if you get nowhere. Get someone else who knows how things are for you to add this to your application and make sure your information is as detailed as possible and make sure you are talking about your worst days because, as you said, this will not just go away. You need help. You should get help. I am not telling you to lie, that would be silly and would have repercussions. If you are like me and have days when you could not fill in your name, do it on a clear day, over several days. I downloaded mine and took my time, got my daughter to look over it [shes training to be a social worker] and she pointed out things I had missed. Things are worse for me now, but with the extra money I have a mobility scooter which is fully insured, they also are linked with the RAC so if I break down they come and get me. They also do all maintenance on it so a puncture would be repaired by them. There is money left over so I can use that on whatever I like, such as a taxi or two. So I am not talking without experience - they said no first, but I sent a pleading letter explaining my whole situation and begged them to help me as I can bearly walk to the curb. Thats true. They added this to my information and when they reviewed it they gave me the full amount. However thats only £51 a week, so you could not live on this. However it is not income based either.

I realise you feel as if you are alone Lynny, please come on here and see that you are not. I too have felt that way and as depression is a part of all of this make sure you are getting the appropriate medication.

I had to stop moaning to friends, family and colleagues as they cannot do anything and either do not want to know or just worry too much. I have friends now on a chat line linked with the USA and we vent often, but we also find things to laugh about.

I found a lot of pictures of animals doing funny things, amusing posters, scenery etc which I have copied and have coming up on my laptop background - I love the one that says "STRESSED IS DESSERT BACKWARDS", it makes me smile when it comes up. Why don't you find something constuctive to make you feel worthwhile? I am also decorating a car seat cover for my mobility scooter seat. At times I just go onto Yahoos question/answer pages and try and help people with the knowledge I have - thats very rewarding, especially as you get feedback when others think you have given good advice.

Are you well enough to volunteer at a local charity shop? If they know there is a chance you won't get in you won't be made a key person [double meaning there!] but you will be appreciated. A local hospital shop where you can sit but still help?

I hope this very long reply is of help to you and to others. Take care of yourself and please don't let this beat you. You sound like someone who is worthwhile. In fact each of you before me sound nice. Keep smiling. Soft hugs.


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