No help, in a mess at end of road! - Fibromyalgia Acti...

Fibromyalgia Action UK

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No help, in a mess at end of road!

Robyngisbourne8
Robyngisbourne8

Hi all, as many of you may know it is so difficult to try and get PIP or otherwise known as disability benefits. And living with constant over riding pain that takes your life and other symptoms that seem to take over you as a person it can be a hard process to even get out of bed in the morning, up until 5 weeks weeks ago I was working... then after being admitted into hospital for 3 weeks I now have lost my business, my friends and still am in poor health, it feels like the end of the road. If anyone else is in the same situation it is just absolutely destroying, why is this all so hard??

14 Replies
Hidden
Hidden

Hi Robyn - I think it is so hard because each of us is different, the disease is really not known at this point, and it has been made fun of for so long that many people (doctors included) feel like it weakens your "valid" list of issues. Even my wonderful physician of 30 plus years hesitates to list it with the rest of my diagnoses. When you say you lost your business, do you mean a business you own, or a job you worked for with someone else. If the latter, are there any sick leave benefits or medical retirement you can access?

I'm sorry I don't know anything about the UKs system for disability, but is there an emergency agency you can talk to for help to tide you over until you can get the finances sorted?

I'm so sorry that you are at this point. Call the Health unlocked main line... If I'm not mistaken there are resources there that can talk with you and may be able to offer some help.

Hidden
Hidden

I am so sorry to hear this.

Life is not fair for fibro sufferers, but there is some help.

Was it your own business (ie selfemployed?) or do you have a case against someone for dismissing you.

It is possible to get ESA and/or PIP - not easy and you need proper help with the system. You need to apply for ESA if you can. Get help with the form, and think of your worst day when answering the questions not an average day or the day others think you had. You'll need a letter from your doctor, a specialist, proof of your stay in hospital, etc.

Sleepy2oo
Sleepy2oo in reply to Hidden

You should also tick the descriptor box of an activity that you might be able to do once but not repeatedly i.e. if you can walk say 50 metres once but you couldn't do that repeatedly because of pain or doing this would leave you in bed the next day tick the box that says you can't walk 50 metres, you wil have to explain this in the comments and defend yourself to an assessor but stick to your guns. My case worker spelt it out before my tribunal that they are looking to see if you can work in an office where you have to photocopying frequently and that sort of thing. And if you dont get ESA after an assessment go to tribunal as you get a good chance of them over turning the original decision. If you appeal get a doctors note to send to the dwp when you send in evidence for the mandatory reconsideration and keep sending them till your tribunal and you should get the assessment rate played to you till your tribunal decision.

I know what u r saying I lost my living life over 15 years ago all I can say one day at a time and pray wishing u the best

electricjaws
electricjaws in reply to Pjik

Me too , 18 years ago, try to take every day one at a time , when something as life changing as this happens it is a roller coaster of emotions, your brain runs all over the place , as it tries to make sense of everything,

Reading your post, my heart went out to you as I can relate very much to what you say. I was self-employed and had to give up work as I was feeling so ill, struggled financially as had to go on benefits for the first time in my life and was unable to be the active and social person I was so lost some of my “friends”. I became very low as I felt my life as I knew it was over and I was going to be this miserable sick person for the rest of my life. I took time away from work and whilst it was not all easy, with the help of my GP, close family and friends who didn’t give up on me, I was able to recuperate and learn to manage my condition to the point where I was able to return to work, albeit in a part time capacity. I know if feels like it but it is not the end of the road, just the end of a particular road. It can be overwhelming when things hit you all at once but there is help out there. You haven’t mentioned why you were in hospital but hopefully it is something that you can recover from or at least will improve? Regardless if you are unable to work then you need to sort out the practicalities of this. As already mentioned, we do have a benefit advisor on here - Janet, who will be happy to give you some advice and point you in the right direction with regards to applying for benefits etc. The link below will take you to her contact details as well as other links that you may find useful.

healthunlocked.com/fibromya...

With regards to friends, I don’t know about you but I was guilty of isolating myself so I did lose some of my social circle however those people who are true friends will stick around. However having this forum when I was feeling alone and isolated was a God send.

I also received help from my GP with my mental health as I was finding it difficult some days to drag myself out of the low moods I was suffering. Besides giving me lots of advice, she referred me to CBT which did help in some way. I have (more or less) accepted that my life has changed for good and even though I have less money and “friends” and am not as active as I once was, I am also less stressed, have more time to do things that I love that I never had time to do before (like writing) and am more able to manage my fibro. I am not saying it has been easy but I hope that sharing my experience shows that there is a little chink of light at the end of the tunnel. In the meantime, we are here to listen and offer you our support, you’re not alone lovely. Take care. xxx

(I notice you haven’t locked your post. You don't have to but many of our members are not too keen on responding to unlocked ones as they can be read by people outside the community and picked up by internet search engines, therefore you are likely to receive more replies if you do. Instructions on how to do this can be found on the link below but if you get stuck please don’t hesitate to ask for help.

healthunlocked.com/fibromya...)

Dont give up ive just been awarded PIP after 4 attemps . Take amother perdon with u ie friend or family xx

Hidden
Hidden

They weren't your real friends that must be so upsetting in itself?, can't family help your business?? I've found so called friends slowly stepping away as I got iller now non visit me,I realized it was about what I could do for them since I'm so ilL I can't do much now ,don't you goto a fibromyalgia group in your area?you'd no doubt get great support there.

Hidden
Hidden

I think you need to goto your Dr and arrange counselling, I'm angry that I'm unwell to.

Thank you for your kind messages everyone, in responce sadly I was self employed running my own business and it's amazed me how many other people can relate to what I've expressed, thank you for support, it's nice to know people are here to listen,

I had to give up work due to the agonising pain. I rarely leave my flat unless I've an appointment with doc/dent or so.And I usually have to get a lift by someone as walking any distance now and I'm in bed for days with back and leg pain! It's awful . Luckily I did get pip and all other benefits on top, I don't know how I would survive if I hadn't, it's very stressful .Have you had an assessment or have you been turned down .If the latter is the case , keep at them and appeal it , the hospital can surely back you up in the pain you have .I wish you lots of luck and love xx

Things will get easier their is a lot of help out there hang in there I manage to get enhanced pip on both and ESA including disability allowance tell them everything be honest about your struggles and hopefully you will get the help you deserve.

Best Wishes

Dan

Hi I totally understand with what your saying life can be so hard sometimes and nobody told us it was going to be like this I hope you still got 1 or 2 good people in your life you really find out Ho your mates are wen you get unwell every thing has changed for you in such a short amount of time there nothing to say that it can all change the other way if you had your own business then shows you was a bright person so why your unwell start to think of things you can do rather than what you can't no more take some time out and recover as best as you can look at every thing for the medicine you take to what you can take naturally no that your not alone there a lot of people on here that will go out there way to help you I was at such a low point and fealt the same as you and someone from this site helped me so much I now have a new friend and some one that understands what I am going thru if I can ever help you for sure I will take care hope you come thru this dark time all the best with the future

Please contact fightback4justice@live.co for help and support to help you get esa and pip.And any other benefits you are entitled to. I am sorry to hear you have lost your business. I hope this helps. Many of us on this site are struggling with our illnesses and disability. I was also signed off work and totally understand what you are going through.

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