I apologise for the fact I've not been able to offer my support to anyone, My fibro probably isn't about as alot of you and I should be trying to offer alot more support, but I just feel like I'm on a rollercoaster constantly and I just never seem to be on flat land.
God my hands are killing me typing...
Got my tribunal decision - Lost my appeal, not surprised, but extremely gutted. I have no idea what I am going to live on, I currently work about an hour a week as a tutor but I was hoping to give that up as I can't cope with that and uni. And I'm moving out of my boyfriend's house next year which means I'm gonna be even more struggling. I'm just lucky I've got a lovely family. But my mum is gonna have to take time off work over the next couple of months as my nan is having an operation tomorrow, hopefully I'll be able to help as much as possible so my mum can work.. I feel like my family is cursed, my nan is struggling with her insides, my mum has COPD and uncontrollable blood pressure, all the girls on that side of the family seem to develop hormonal migraines and bad knees, and i have fibro etc, my sister thankfully is ok at the moment other than severe period pains.... I don't wanna develop anymore problems as I get older, I wanna get rid of them! I want to have a happy family, I wanna have loads of kids, I wanna look after my mum and dad when they get old, I want a fulfilled career. And I feel like I'm gonna be lucky to get out of bed everyday. Why are we all cursed? I want a cure. They told me at my tribunal that I should have coping mechanisms in place. I do, but they aren't perfect, they can't fulfil everything I need help with. Maybe I'm pathetic, but I'm always told I'm so strong by people I know and meet, and I try to believe it. I feel proud that I manage to do well at uni. Maybe I'm not ill, maybe it is all in head...
Might go to the doctor and say this all, I just constantly feel stressed and anxious atm... And I just feel down...
Anyways, sorry for the rant, forgot how much my hands hurt while I ranted lol...
I love this site, I think I would be alot worse off and probably sat crying if I didn't have this site to just rant at, and read others stories.
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cxs957
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Hi that is awful you are made to feel like it is in your head well if it is there are an awful lot of peopleon here with it in their head too soi dont think that is the case bless you, you take care and you keep believing and you will do all the things you wantt to achieve one way or another you will get there you take care love to you diddle x
Thanks - I'm feeling a bit better, but just in agony today which hasn't helped and I've been driving alot to go and see my nan in hospital, exhausted! I'm glad I've got a support network that has helped me keeping a positive look on things, both here and out in the world x x
I'm going to echo what Christine said - I am more than happy to be messaged if there is any way that I can help you. Even if its only to tell me how you are feeling in private.
Re your tribunal - you can appeal again - might be worth getting in touch with your local CAB to get advice.
Lastly big gentle hugs and I will be thinking of you xxxx
Hi cxs,its not you or your condition its the ignorance of the TRIBUANAL Panel ive been without for 3yrs and the alround damage so dont give up,its not in your head darlin,try "circles network advocacy" very helpful and as much written info from gp these days seem to be what is required to cover there ignorance,as i am finding with other situations,good luck
Yeh.. I know it is their ignorance, which doesn't personally help me. I feel if anything it is more upsetting because I know that there is no hope. Yeh I've realised that the gps opinion is important since my first refusal and I plan on working alot harder with my new gp to build up a relationship.
My heart goes out to you and I sorely wish ignorant people to have the power to make changes in peoples lives would educate themselves about fibro and other illnesses before they decide if they will or won't allow benefits to those who are entitled to claim. It is so frustrating and makes me angry when I read your blog and many others like you. Take comfort from the fact we all support you and each other. Be good to yourself and try not to worry and think too far in to the future. Every day is precious as you are to those that matter. Sending love and positive thoughts your way x
I wish they had actually read my daily diary, they didn't even slightly ask me about it, they just went on and on about how if I manage to deal with uni (even though I have constant supervision by empolyed support workers) then I'm obvs fine...
sorry to hear of the distress you are under I understand its not easy ,i have fibro and have for a few years it been really hard iv felt so so low and in so much pain some days im unable to move or get out of bed I also applied for DLA and was refused but appealed and won it took 3 years iv never felt so stressed as i wasnt able to work and still cant due to the fibro and chrons all i can say is appeal you are entitled to it get as many supporting letters people can not see these illnesses but they continue to to have ongoing effects with daily living for me im unable to work which has put me in debt and im only able to live in the day as I never no how I will be from day to day with my ongoing conditions god luck
Hi I feel for you so much and know some of what you are feeling i lost my appeal if it wasnot for my fantastic husband i really do not know what i would do i have no money coming in and no hope of getting any if my husband falls ill god for bid it will be carboard city i would last about ten minutes has since having this the pain is bad enough but i am so scared of people i do not know sorry i am going on about me and this message is to let you know i feel so much for you and send you lots of hugs take care hope things improve for you xxx
Yeh I know that without my parents, I have no idea how I'd cope. And if it wasn't for the disabled students allowance I would not be at uni. I know what you mean about being scared, the moment they started talking to me I was shaking and ready to cry. Even though before I felt so brave.
It sounds like you are trying to think of too many things at once, you need to try and take one day at a time, and slow down.
One day you will prberbly feel you are strong enough to have children hun as there are plenty of people who do, I got fibro after my kids but i had mine young, i am so glad i did. Yes they are hard work but they make me get out of bed, i have no choice and if ihave to go back to bed then i do.
It sounds like it is all getting on top of you hun so it will be a good idea to talk to your doctor, but i also hope this will help you get it all out hun, as we all listen and you know that we all understand.
I have plenty of days like this and you are definatly not alone hun.
I am so sorry you lost this time. find some more help and an advocate to come with you. someone familliar with wording can help. write it all down - especially what they asked you and where they did not agree and start it all again. You will get there - it is them taht are wrong NOT you! soft hugs xxxxx
several people havea support workerof some kind. i am not sure how they get involved but if you look at my question on this you will find out some names and info. hope it hekps. typing is difficult today lol xxx
so sorry to hear you lost your appeal, i've been trying since 2007 got an appeal on the go now, atos sending a doctor out on wed to assess me, even my welfare rights didn't want to represent me, probably cos i look "normal", dont give up keep on and on, i too have a wonderful partener and family but its still so hard, take care xxx
Hi. If you have not yet, please check out the Atos & DWP guidance for assessing Fibro. They should not be doing the pulling and strength tests that leave us crippled for days afterwards. Remember if something causes pain straight away OR LATER then you cannot do it without being in pain ( sadly you have to say some things hurt that may not immediately, but you know after doing them you will hurt badly and not be able to function, they just don't get that). Once we get our heads around the forms and questions it is easier to get them to understand.
You may find some support from a local disability group. Do a Google search for your area.
I never got assessed, which is what has upset me the most. They seemed to deem my walking fine because I walked from the waiting area to the chair, even though I walked slowly and with support..
Aww thats a great shame about your tribunal, keep on fighting it although I know from personal experience how difficult that is because I have been through it. If only these people that make the decisions knew how they devastate our lives maybe they would be a little more empathetic.
I have also had to deal with sick family members aswell as fighting my own illness and know how difficult it is. People always say I am the strong one but little do they see how it affects me when I go home and close my door. Anyway, I really do feel for you and wish there was something I could do to make things better. Take care xx
Some days I feel so strong and then it just seems to hit me and I struggle so much to pick myself back up. I end up just sitting in bed all day and never wanting to get out again.
Hi everyone, just joined the site, at least I know I am not alone now! I am going to read all the posts I can, and catch up on all the info. I hope to be able to contribute and become involved. In the meantime 'hello to all, and hugs to those in need'. xxxx
Do not despair!!!! I was turned down first time even after appeal. In your area (Yellow Pages under charities) will be an agency which specialises in helping people re-apply. They helped me and I won. I used to own my own house, 2 cars, had holidays abroad, but I ended up at the point where that was all gone, and I had to have income support, which meant they kept trying to find a job that I could do.
I now have a 1 bed support bungalow, mid level Disability and high level Motability, as well as the fact that my £21 a month bill for medicine is now paid for along with dentist and specs, plus the concessions you get everywhere because you are disabled.
Because we are ill, find it difficult to string thoughts and words together a lot of days, and just want to be left quiet, we're an easy target - so KEEP GOING it will be worth it.
You won't solve your Fibro through this but it will make living with it much easier. Good luck. Kate
well done Katybird! thats really good advice and positive information to all of us on our journey thru the battlefield of paperwork and appeals... Good Luck 2 1 and all who r on or about 2 start the long and stressfull journey keep going!!! big gentle hugs every1 xx
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