Advice please ....... with support for Fibro mom :)

Advice Please, since 2009 I was told I had Fibro.....ouch... also diagnosed wth diabetes and neuropathy, I have since cut down my hrs at work due to bad pain, general fatigue and awful forgetfulness, not to mention very bad nausea/ vomitting and depression which when I did complain to my GP she one day told me I was just stressed and needed to exercise or do more walking. I have two children, a 7 yr old who was born prematurely diagnosed with mild scoliosis in the neck and has beeen referred by the orthopaedics for physio, she also has speech and language delays and has no stoppped receiving much needed SALT at her school because of NHS cuts.......arrggggghhhh!! Im so forgetful and in constant pain that I forget appointments and have not been able to take her to her hospital apppointments and this I feel really horrid about.

My 17 yr old daughter has helped me since 2009 when I began having the flare up and now she has just been diagnosed with depresson and anxiety and has been put on antidepressants, I feel worse as I think it was too much for her to cope with as she was only 15 at the time. I need some help as its just us three, my eldest still tries to help me alot but I know its so much for her at the moment...... but hey its her LOVE for her mom.... I try to not ask for too much though. I applied for some help from DLA but was turned down last year, right now its my last lifeline, I really need some advice on what to do, just a little help will make a difference. I dont want to stop work but sometims it feels like I will need to reconsider my hrs (currently doing 33 hrs p/w). Still loving being there for others and the kids. Comments welcome.

4 Replies

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  • Hi Lizz

    You really have a lot on your plate, don't you? It's great that your oldest daughter is so supportive. Please try not to feel guilty about her anxiety and depression, it's very common among teenagers, and at least it is recognised and she is getting help.

    I can't help with information on benefits, but I think there is some information on the main fibroaction website (link at the top of this page) and also I am sure some of our other lovely members will be along soon with some info and advice for you. You can also check out citizens advice. They have a great website with lots of info, and you can get information over the phone, or face to face at your local centre.

    As a single parent, you obviously need to consider the financial implications of reducing your hours at work, but it seems like a good idea, even temporarily, as you are obviously struggling at th moment. This illness is horrible, and my heart goes out to you and your girls. I do hope you soon start to find ways of improving things for all three of you.

    xx

  • Oh my you have so much to cope with... I can empathise with you as although I do have an OH. He has an incurable condition and my son has aspergers and moderate learning difficulties ....I see you have got some help for your daughter that's but do you have the right meds for you.. Your GP SHOULD check your meds and if they are not helping , find alternatives , if your GP is not helpful can you see another at your surgery or change altogether, I,m afraid lots of us have had to resort to this ... My GP now I had problems with at first so I sent him a personal letter laying everything out and since then he has been fantastic.

    We have lots on information at

    fibrocation.org

    And if you email

    Info@fibroaction.org and put the heading benefits Mdaisy can send you all the sheets about work and benefits

    Hope that helps even a little

    VG x

  • Hi Lizz,

    Good advice above, to which I can't add much! You say you don't want to give up work, which I can understand, but it might be worth considering that option for a short while to give yourself a break.

    I know it has financial implications, but at least you could get a bit of a rest to have a good think and do some forward planning - maybe even take a little holiday if you can get some cash together - that would help your older daughter a lot.

    Just a suggestion, as I can see the problems you have!

    Moffy x

  • Hi read your post. It's very hard what your going through. I remember going to doctors for years with problems and they told me Alsorts if stupid advise. Since I got a new doctor I now know it depends in what doctor your seeing as to how seriously their taking you. You have a lot to take care if. I have got some advise from my own experience . I used to write everything down for that week. Stick it on the door you use everyday . Even down to home work for the kids . It works , try not to miss appointments for your kids, even have your friends call you up to remind you. Try get everyone assisting you with this memory problem I do it works. If its a transport problem because your insanely tired like myself and can't actually manage the trip , get someone involved that may be able to help . Or plan the journey well in advance if you can get your head round it and get rest the day before. I found all these things helped a lot. As at the time I had fibro and didn't even know it. It's so hard when your poorly to get through these situations , you need help and support x

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