I usually hate being all "yoohoo! look at me, I have fibromyalgia, I'm on my feet working three days a week in a fast food place and I cook and clean for my family, aren't I amazing? Feel sorry for me " but after lots of tears and feeling a useless burden of miserableness my partner says I need help. For someone other than him to tell me I need help and I am doing ok.
I'm not good with face to face in a group lets hug type things, so, here I am reaching out to anyone who will tolerate my ramblings for the something... I don't know what... to help me.
It's been bad, but never as bad as yesterday when my pip claim was denied. My partner, bless him, was trying desperately to help me with what I could do to get them to change their minds but me being me thought sod it, they don't believe there is anything wrong so there mustn't be anything wrong I'll give up, carry on as normal, who cares!
My partner can't understand my reasoning of this, he can see I need help, he always tells me to ask for help but I never do, I try to tell him that I feel I need to do everything because I make everyone miserable when I'm around and I feel so bad if he has to do the things that I normally do, but then I make him feel bad when he does stuff because I'm always saying sorry, which I am, permanently sorry. I know I need to snap out of it, accept help and not feel bad but I am just stuck in this mindset and don't know how to change.
I don't know if any of this makes sense but if you have read this, thank-you for spending the time, it is much appreciated.
Please don't give up on your PIP claim, thats what they want you to do, I was also turned down PIP a few weeks ago, I went straight to my local CAB office, got an amazing woman who went through the full report with me, she is now writing to the DWP on my behalf and asking them to reconsider their decision, I should hopefully hear back about this in the next few weeks.
I know it may not feel like it but there are people out there who can and will give you the help that you so truely deserve so please don't give up, fight for what your entitled too 😁
Thanks so much for your message it means a lot you read my ramblings.
You must have a great CAB service, I went to mine before about another issue and they just gave me a load of printouts of the stuff I have already read on their website. I will be writing to them though because the report is only half of what I told the lady at my assessment and I don't think that's fair. So fingers crossed.
So sorry your pip was denied. I haven't even tried for one. I work full time so I know there is no point. I do need a decent car though, one with power steering, hurts to drive with constant pain in elbows.
Like you I was always saying sorry and would never ask for help, knew I wouldn't get it though, my family just see mum, mum who does everything but moans. My husband never understood and never wanted too, so he had an affair and left me last year, made the Fibro worse. Now all alone and really struggling, let your family help you don't be stubborn, do not end up like me. They really love you our they wouldn't want to help. Take care, chin up. X
I've had fybromyalgia for 7 years and for six of those I stubbornly refused any form of help. Earlier this year my husband begged me to tell people how ill I really was and to accept help if it was offered. I can promise you that once you surrender it makes a huge difference. My family said it was painful to watch me struggle to do even some minor tasks.
Saying sorry all time seems to be a mantra for fybro sufferers. I think that because fybromyalgia is still a relatively unknown illness and because even some Drs doubt its existence we feel the need to apologise for having it. If we had MS, which has almost identical symptoms, I don't think we would feel so guilty as this is a better known illness.
Very often the days you are looking your best, are the days you are suffering the most. This, I think, is another reason we find it difficult to ask for help. You almost feel like a fraud. This is why it is so important to tell your family, friends and health carers exactly how debilitating fybro is! There is no other way for people around us to understand this condition unless we are completely honest about it.
This past year for me has been so much easier. I don't mean that I've been cured, but finally accepting help has made everyone around me happier and has decreased the pain and fatigue. I no longer pushing myself beyond my capabilities so the severity of my symptoms are diminished.
Tisrhi, your partner sounds really caring, let him help you. This illness is very real and very debilitating. If we aren't honest about how bad things are how can we expect people to understand ?
The citizens advice bureau can help you with your PIP appeal, they are very clued up on fybro and have a good success rate in winning appeals.
Taking this step and joining this online community is probably the best decision you have made for some time. Sharing your problems with people who, as fellow sufferers, understand how bad things can be, will lift a tremendous burden from your shoulders.
Sorry for such a long reply, I hope you find some of it helpful.
Aww sorry your local CAB aren't very helpful, think there are other local authorities who could help you, turntous I think is one, not sure though, but yeah you should defo ask for a reconsideration, my report also had aload of crap in it, was full of lies but made me out to be a liar!! Am not giving up until I am awarded with what am entitled to 😃 hope you dont give up either
Morning. If you are still working three days a week and keeping the house together your doing really well. My husband has never really understood what I am going through but still supports me and I love him for it. Pip they are the gain of my life cab will help you put form in and they are amazing so get appointment and ask them to help. They will take along of pressure off you. I have been diagnosed for a short time but have felt the same as you for along time I'm afraid we do have something that is very hard to understand if you don't have it and we all get depressed from time to time I snap, rant and cry a lot, but my lot are so used to it I think they just shut down and stop listening. You made a good choice in going the group I've just joined and its so great reading and talking to people that Understand exactly how you feel. So welcome. Big hugs. Deb xx
I think you are doing really well, do ask for help when you need it though no point in overdoing it and making yourself feel worse than you do, you have willing help around you, use it. Lou xx
I couldn't agree more Lou, - tisrhi you ARE doing well, the PIP thing is a travesty but fight it. I understand you've had a bad experience with the CAB but I can only say where it not for their help in filling all the endless forms in, I most certainly wouldn't have won mine, so it may be worth your while giving them a second chance. You can either be proved right or wrong, it with no harm having been done, if you don't take the risk, you may miss out on some very good help. It is always best to go there in person and have an interview with them, take with you all the paperwork that you have submitted to the DWP ( I do hope you've got copies - I always make at least two copies for myself, just so my foggieness can't win out and so that I have the papers there to work on future claims with) and I really think it will be a step in the right direction.
Do let us know how you get on and I'm sending you positive soothing vibes to help you, hold in there tisrhi, you've got a good man who clearly cares, as do we here 😀😀
Trishi ramble away I'm like you sti'll trying to do everything and I no it's hard to step back from it all and ask for help... It's like having an argument with yourself to do the house work or to leave it LOL if your like me and like everything in its place it's a nightmare! My hubby tells me to stop but I'm like 'if we leave it tomorrow will twice as bad and if I do to much tomorrow...it will hurt more'
Just imagine how much happier everyone around would be if you weren't so miserable! If you loose people due to being ill they have a problem, lack of empathy and compassion, you're better of without them. Take all the help you can get because you don't get a second chance at 'life'.
I went to welfare rights for help with my forms, they are there to help you !! They will sit and go through forms with you, they are on your side. I've asked CAB before about different things and they were no help. I do hope all goes well for you. Fluffy hugs x
Thank-you all very much for your messages today You are all so very kind. I will keep trying with the pip claim, I have a feeling it's going to be a lot easier than accepting help from the family though but I will try that too.
Please know FibroAction can supply you with step by step guides that may help with your PIP claim, email us using info@fibroaction.org and Karen our Admin Assistant would be happy to send this out to you.
Welcome to the forum and I am so genuinely sorry to read that you are struggling and suffering so much. I sincerely hope that you can find some resolution and relief to these issues.
What has struck me reading through this post and replies is how we Fibros simply DON'T help ourselves. ...we try to be superheroes yet we have a long term illness....why oh why do we do it to ourselves?
Fibromyalgia is horribly real if largely invisible.....I'm mindful of the 'people treat us the way we treat ourselves' mantra.....if we want other folk to accept Fibro and so treat us kindly and compassionately we must first accept it ourselves surely.
Be kind to yourself and self caring - isn't that what we would all advise a friend? If you have loving people willing to help you take it with open arms - many Fibros are not so blessed. Can only say the reply by Imdone here is to be recommended...we really can be our own worst enemies .
I've just joined the group after looking on the NHS website at fibro, having been told that this is probably my diagnosis. After reading all the replies to your post I burst into tears. Finally people who know and understand what its like to feel like this. My husband was so unsupportive that it caused our relationship to break down last year which was horrendous but probably, in hindsight, the best thing to come from this.
I also find it hard to ask for help because I was made to believe for so long that I was a fraud. Saying that I have had a lot of help from CAB and welfare rights in the past year and would definitely say try again. Everyone deserves a second chance and don't let them fob you off. Take care.
So I have written to the pip to review my claim but I only went and posted it normal post instead of getting it signed for, (what a numpty, I am)Hope I hear back soon. Thanks again for all your kind words and support.
reaching out and asking for support is one of the hardest things to do so well done. There is a lot if help out there nowadays for fibromyalgia sufferers. The best help I got was through the pain clinic at my local hospital. After 8 years of asking me to attend a pain management course I finally did it. The only reason I didn't do it sooner is because it was 2 days a week for 4 weeks and I work 3 days per week and was scared of losing my job. I found a btr job who accepted my condition and encouraged me to attend. I am a different person now. I don't get as stressed as I did which as you know makes your fibro worsE. I manage my pain better with thinking skills and breathing techniques and through exercise. The main thing is taking time out from your hectic life for you. Because you matter and if your feeling good about yourself again you can manage the hard bumps our daily life throws at us that much better. Keep trying for the pip. Appeal it with the help of welfare rights If your not comfortable with the cab. It took me 9 years but I finally got awarded dla 3 years ago. Don't give up!!! You matter remember that xxx
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I'm like you sti'll trying to do everything and I no it's hard to step back from it all and ask for help... It's like having an argument with yourself to do the house work or to leave it LOL if your like me and like everything in its place it's a nightmare! My hubby tells me to stop but I'm like 'if we leave it tomorrow will twice as bad and if I do to much tomorrow...it will hurt more' 
GP : used to think he was a good dr...now I have changed my mind!!!
I feel like a lost cause
Personal Independent Payments Assessment, Tomorrow 23.4.15. Plus other things on my mind. Sorry I had a bit of a rant :( 
