I’m not looking for a pity party or even any advice I just want to vent.
I have PPMS and I know I’m lucky because I feel well, I I’m not in pain and I don’t have to contend with being poor as well as disabled, but I do find myself wondering what I did to deserve this. I can’t walk but I can, with a lot of determination and sometimes with help, weight bear to transfer, I’ve lost my fine motor skills, can’t prepare a meal, make a hot drink, use cutlery any more. I have to pay in full for my care visits, I’ve bought most of the equipment I need, although I got a bed handle and shower seat free. Attendant push wheelchairs which I replace around every four years, powered wheelchairs, I’ve recently had to replace that, thousands on adapting my home, ramp, automated door system, wet room, making my garden low maintenance and accessible. The MS Society regularly send mail shots asking for donations and even a legacy when I die. There’s not likely to be anything left when I’m gone! My husband has now been diagnosed with Alzheimer’s and we’ve been housebound since October. We have no family and I make all the decisions. Friends whilst saying if I need anything just ask and promising to visit and even take us out haven’t actually delivered. I feel very alone, and like there isn’t anything to look forward to.
Having got that off my chest I apologise if I’ve offended anyone who’s worse off than me but not feeling aggrieved or sorry for themselves like I am just now.
F*ck MS
Sorry you feel so crappy (not pity) If people have the energy to be offended by your post, I would not let it bother you, you have enough on your plate. All the best
Mick
This sounds very familiar. Yes this strain of MS creeps up your legs, left me with drop foot, no strength to move my legs, and pressure soars then into the bowls and bladder, detail available on request, now the numbness has affected my fingers and hands.
Hi Flowerpot,
No pity here just understanding as I’m in a very similar situation (bought all the adaptions and wheelchairs etc). I’m definitely on my own now since my husband, who was my main carer and love of my life, died. I’m coping but I miss him so very much (we had such happy times together). Anyway I just wanted to send BIG WARM HUGS and let you know some people do understand and do care, and people do need to vent.
Mary xxx
stop sitting on the fence, tell us what you really think! 
I wholeheartedly agree with you.
Thank you for the big warm hugs 
I don’t often feel sorry for myself. I’m so sorry for your loss. I know that will be me one day 
When I married an older man I knew I’d probably have to look after him in his old age, not have him spend his old age looking after me, I certainly didn’t anticipate not being able to do it.
Until he spent most of November in hospital, first of all with pneumonia, then needing abdominal surgery, he’d been my main carer, but he’s no longer able to do as much for me as he used to.
I’m so grateful for the years we’ve had together, the places we’ve visited, the memories we made. I still have those.
Big warm hugs to you too.
Eve 
Thank you Eve, my lovely husband died in his 60’s and its nearly 2 years ago now and I’m still heartbroken (he didn’t even get to retire from work) but we were together for 50 happy, happy memorable years.
So you hang on to those memories of happy times as they should help you through this very difficult time. And it’s fine for you to feel sorry for yourself (you have every right) especially as you need to be strong to get through supporting your husband whilst trying to live and cope with this horrid MS. Life can be so unfair, but you are a warrior and you can do this.
We have to support each other through these times and that’s what’s good about this site because we can say anything here and others will understand.
((((Hugs)))) Mary
PPMS since probably 2000, slow progressive.
lost husband 2017. never get over it.
i came off all contact with MS forums as they made me more depressed.
Slowly my savings went. i have moved 3 times since he passed away, and now in the last place saloon a nice little open plan sitting room dining room.
I can get my care now paid for as i am below threshold. i even get a smidgen of pension credit i have my pension i am 73.
How much more can MS rob me from. I still keep going only because i had my little dog lucy then she passed away 2 years ago in 2022 when i had to go into hospital for 3 weeks for a heart issue. another story.
so in december 2022 my little bella came into my life she was thrown out into the streets in derby a little shi tzu, found out she was same age as my lucy and born same time. her name was lucky but i changed it to bella.
she has been a joy to me, and gets me up everyday. i pay for my cleaner lady who has been with me 14 years. so she does all the cleaning and changes my bed.
i have care twice a day via the care services.
yes i can still walk a little in the house, but not outside, i have no energy and fatigue hits me quickly.
Just had a power chair assessment and have been offered one from wheelchair services, i can use in doors or outdoors. coming in 3 months.
tomorrow i have my MS NURSE VISITING ME, yep she is coming as i am considered end of help nowt more they can do, so she will help me with assessment and see what i need.
I struggled to accept my MS but in the end it is what it is, i just wish i had gone with my husband as being on my own is no fun, and hell where aer my family. another story.
so today is monday, i have exciting day to look forward too morning care then my shopping comes at 11am, my friend cleaner is here 2 hours and she will put it away, then 12pm carer puts something on a plate for me, as i rarely use microwave as i end up scolding. i cuddle my my little dog and she has been out for a walk with friends help. then 4pm i am pooped and back in bed.
WOO HOO what a great day. i spend it looking out the window and watch the world go by, if the day is dry i can sit out there on my patio with my bella and get some sunshine. life is good. i have a life. sort of.
i get all that FRIENDS PROMISING and they never turn up i am convinced they are scared they will catch MS off me lol.
as to help did you contact the adult social services in your area, even if you have money you entitled to it. they will even organise O.T. visits as well. what about your husband has he had his assessment? you will need care for him.
you are in a difficult situation i would not want to be in. I can understand your despair to be honest as its just one more thing to cope with.
WE WORK HARD ALL OUR LIVES and have this vision of spending our retirement with the person we love, little do we realise that one day all that will be gone and we are left in hell. my husband had gone to see a bungalow in IOW and came back on the thursday and passed away in the morning of the monday with sepsis.
feel sorry for yourself why shouldnt you?
big hugs.
a female viking lol.
Big hugs to you too.
So many similarities. Diagnosed 2006, just before I turned 50 years old. Steadily downhill since then. Downsized to a bungalow a few months later.
I’m so very sorry about your husband, life isn’t fair.
Adult social services are aware of both of us. They arranged the care package but means testing means I pay in full. OT visits recommended majot building work for a ramp, and converting bathroom to wet room, again means tested meant no help with the cost.
If I’d never worked and smoked, drunk or drugged my way to ill health it would all be free. However my occupational pension means I don’t have to contend with being poor as well as disabled.
The NHS doesn’t offer physiotherapy, so I pay to see a specialist Neuro-physio once a fortnight, in an effort to hang on to what I’ve got.
My neurologist is abrupt and doesn’t seem to like people very much. Because of Covid my last two reviews have been by phone, only a couple of minutes long! The last one was nearly two years ago.
Although having a neurologist and being known to social services means I’m in the system (both of us with social services)
I have a cleaner who’s become a friend, a real gem. The second one, my previous one retired during Covid lockdown.
From time to time I steer clear of this forum, but then I’m drawn back to the place where people understand and don’t judge.
I’m sorry you’re so unhappy but it’s good that your four legged companion gives you love and joy and a reason to go on.
Love and hugs. Eve x
hi hun, there are lots of grants you might be able to apply for. i didnt know if you have to get large doorways put in your house because of your disability you can get a rebate on your council tax. i had my own house ad hubby backk then and they came and saw my wheelchair and the wide door and we got it. no one lets you know of these things, but you can get grants for wet rooms for sure. i am so sorry for you really as in some respects and i try to say this with respect you have lost your husband as well. yes we get called back to the forum dont we. i am in bed now exhausted with my little pooch snuggled up next to me. hurt like the dickens.
life just isnt meant to be this hard is it. or is it? hugs love CC. xxxx
Thanks. My doorways haven’t been widened, so I’ve got damage to door frames and skirting boards! I can’t face the upheaval of the work, redecorating etc it would involve. I could do with light switches being lower and new kitchen with some lower work surfaces, or the really fancy ones you can raise or lower! In my dreams, again too much work and expense. I was means tested by the Disabled Grants Facilities team, not eligible for any help, but the local authority have granted me the council tax reduction because I use a wheelchair indoors.
Yes I have lost my husband……………. and I’m going to lose him again and again.
Hugs xx
ok door frames. i had stupid doors in this place i just moved too. when the door is open into the bedroom i had no space. i have moved to sheltered accommodation its got open plan sitting room with kitchen, then my bedroom, hallway and wet room.
anyway the doors were massive and got on my nerves so i had a carpenter come and he has now fitted me with folding doors they are amazing. even the O.T things they are brilliant.
its made such a difference to my space. similar to this. no mess or fuss. Light switches shouldnt take long to do hun. an electrician can soon sort that out for you. my trifolds fitted didnt cost me much about 400.00 for the two fitted. as i had extra wide doors lol which turned out to be a curse because the doors were too big lol. it is difficult but would make it so much easier for you. yes i am so so sorry about your hubby. i am here if you every need to chat xxxx
Same to you about chats.
Doors look fab. Mine possibly not wide enough?
Light switches, wouldn’t they have to damage the decor to move them? I can’t face redecorating!
Hugs. Eve xx