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MS has ruined my life...

and the retirement I worked so hard for and planned for. I wanted to be able to enjoy a comfortable retirement, so we worked and saved. I’m lucky I’m not poor, but instead of spending on nice things and having fun and travelling, it’s all going to go on adapting my home, ramps, wet room etc. not to mention wheelchairs and scooter.

I might as well have drunk, smoked and drugged myself to ill health and squandered instead of saved then I’d get all of this stuff courtesy of the NHS and Social Services.

It’s nine years since my diagnosis. The deterioration has been relentless. I’d hoped I’d never need to use the wheelchair indoors, but that day arrived last week.

I’m so p’d off with the lack of interest and support from the NHS and all the other agencies that help some people, but not all and certainly not me.

Sorry for sounding sorry for myself, but it’s hard to keep positive and upbeat and smiling while life and the rest of the world is passing me by.

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I completely understand , and i really feel for you , i am 43 , no savings , lots of debt , i can just make it to the toilet and down the stairs , ive had m.s 8 years , i was working , walking in december with a clear head and now im on sick leave , life is pointless , im home all alone as my wife is trying to keep working to pay the rent , the dwp declined my mobility , having awful memory issues and cant remember things earlier in the day , big hugs x

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hiya

you are not sounding sorry for yourself-simply the reality you find yourself in.

and yes its cr*p!

i aint going to patronise with ‘tomorrow will be better’ cos it will prob be similar thoughts/struggles… but at some point you will see or hear something that reminds you of the good things in life. nothing stays the same forever-life is constantly changing.

take care, ellie (who is waiting on carer to help her get ready to take me to a funeral so i hope you understand where my words are coming from) x

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Life is so s**t sometimes, & it seems to pick on people who don’t deserve it, “luck of the draw” Ive heard many times, whats luck got to do with it!!! Aren’t people thoughtful. Its perfectly understandable to be angry, upset & p****d off & your right flowerpot, we don’t know if tomorrow will be better, lets just hope so, well off yto hospital appointment now, my “social” life is so busy, take care all of you Tracey x

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Hey flowerpot, this is what the forum is about, you are not truly alone.

There are a lot of people on here that can help and advise, people in the same position as you.

Dont panic, there will be a way of helping yourself it’s just something else to learn.

You have a phone, you have online help you don’t even need to leave the house to shop anymore! Do your neighbours know of your condition?

lots of support out there, you just need to learn to ask for it

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Like you I worked hard, I saved and I was fortunate enough to be able to contribute to a decent works pension. My Contribution based ESA is drastically reduced because of my pension and because it’s contribution based it doesn’t lead to other benefits but I take the view that I’m still lucky and whatever the government or future governments decide they can’t take my pension away. I understand what you are saying re having to fund everything yourself but to be honest I don’t think things are as easy as people assume for those who don’t have their own income.

Bldy hl someone must have slipped me a happy pill I’m not usually so laid back and relaxed about the situation I find myself in. Cheer up chick life’s too short to let things like this get you down.

Jan x

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Ive got severe cog fog like im mentally impared too which doesnt help , mind you been on citalopram for anxiety / depression for 4 weeks so hoping it lifts a bit x

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Oh Gaz, my problems pale into insignificance compared to yours. We have a mortgage and car loan and a home improvement loan so we’re not debt free, but we can pay the bills.

big hugs to you.

do the CAB operate in Wales? Are there any local disability rights charities to help with advice and get you what you are entitled too?

Flowerpot - totally understand your sentiments. I stopped work and sold my property when my Mother died in order to care for my father as he begged me to be with him and not working as he was so lonely. We spend some wonderful years together until he sadly died at 93. I then moved into my son’s house for six months to care for my ex husband who was in the terminal stages of liver cancer. (Never claimed any carer’s allowance by the way) Five broken bones later, weighing only 5 stone, I was eventually diagnosed with MS. I had to cash in my private pension in order to pay rent for two years. I then had to resort to claiming council housing benefit, as the kitty was empty. After almost a two year wait my P.I.P. was granted (both living and mobility) my benefit was reduced, so I am now £14 a month worse off.

I consider myself lucky that in the UK this help is available to me (I did pay over £300,000 in tax & N.I.) so do not feel guilty, simply fortunate.

I know that some people take advantage of the system, without having contributed, but we are not all scroungers.

Take care - Mary

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I’m on a works pension (ill health) which pays more than what the DWP consider you need to live on.

So they say, I am entitled to ESA but because of my pension do not receive any ESA, its just to cover my national insurance contributions because I am unable to work.

So if it wasn’t for my works pension letting the DWP off , after me paying into a system for over 38 years.

And the best thing about this is they paid me ESA for 4 years before realising their mistake and now I have to pay back there error !!!

They make mistakes, just as we all do, so when dealing with the DWP - ALWAYS ask for it in writing so you have proof !!

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I’ve pulled myself together now and am counting my blessings xx

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