I had a shower this morning and found it hard to stay standing I had to regularly put my hands to the wall or glass doors as my feet kept slipping from under me I then had to struggle downstairs with a basket full of clothes for the wash I am getting really worried and wonder what is going to happen next
My nurologist has suggested moving into supported living however there are no supported living homes for my age range near where I live.
I have an appointment with my GP tomorrow so think I might ask her for a refferal back to my neuro as I I feel my symptoms are getting worse quite quickly now.
It is so hard to keep my positive attitude going espesically when my own mother seems more botherd about herself
Hi Jon, how old are you? (if you don’t mind me asking).
When you see doctor tomorrow ask if you can have OT referal for aids and adaptations at home. They can put grab rails in that shower for starters. (it’s all free payed for by local authority)
Remember Jon, even with ppms symptoms can come and go. Because some symptoms seem to be getting worse at moment doesn’t mean they will stay that way.
Take care Jon… what I mean is take that extra bit of care right now. Try not to worry too much… it doesn’ help.
Is it very hot where you are? London is like a sauna and my MS does not like it one bit! (that is more sweat than tears!)
I am 33 Pat but feel a lot older at times I doubt if my mum would alllow any adaptations to the house she wouldn’t do it for my dad when he got cancer so there is no way she would do it for me she is so self absorbed.
Yes it is very hot up here I sleep with both bedroom windows open and I’m still warm roll on winter lol
I will mention the OT to my GP, is that an occupational therapist?
Think I may just have to get one of those slip mats or a shower chair might pay a visit to my local disability store next week to see what they have.
Hi Jon, I wonder if you could get rehoused into social (specially adapted) housing?
Are you on your local housing list?
As you are living with stairs and your mother is not willing to have adaptations put in, you just might be able to get ‘priority’ on the list.
I think if I were you I would start with the GP. Explain situation and ask if he/she can refer to social worker. Then, if you are not on local housing list, get a form and go on it. Given your situation and with a ‘push’ from social services and GP you just might get housed.
I used to work in social housing so I speak with some knowledge of how the system works.
Let me know if you want to go in this direction and I will give you as much advice as I can. I know it seems like a huge effort, which is difficult when also dealing with fatigue, but it could get you a flat of your own (and of course eligible for Housing Benefit).
Anyway hon think about it. Very depressing situation with your mother and perhaps would be lovely to have your own place?
I would love my own place and yes I am on the local housing register I just have to wait until a suitable propperty becomes available before I can even place a bid on it.
When I do find my own place the council will pay my rent but I would be liable for bills which kinda worries me.
Unless I get into a supported living place where utility bills are included in the rent but there are no places like that for my age range near me I would have to move to Manchester which again causes a problem because I don’t currently live in Manchester.
At the moment I am ok getting out of bed, washed dressed and shaved when needed so thankfully don’t need help with that yet and I can do my own washing ironing and cooking with effort even if it is only simple microwave food with the addition of things heted up in a saucepan,
Apparantley I cant get help from a social worker until I get a place of my own.
I have been put into class B on the housing register which means I am in need of being rehoused in a ground floor flat.but to be re-homed in a bungalow you need to be over 55 or a permenant wheelchair user.
I will speak to my GP tomorrow ask for another referral to my neuro, mention my current mobility and housing issuses and see what she says.
Hi Jon, I’m in sheltered and we still pay our own electric and a monthly payment of about £19 for water and heating which is not covered by housing benefit. Not sure if it’s the same for supported housing.
Do you get DLA?
I get Incapacity Benefit (still… not had the dreaded call-up for ESA yet) and DLA and Income Support. Can manage ok with my bills… but saying that, an old nun living in the middle of Siberia probably has more of a social life than me!
If you do want to hurry the process of being housed up a bit, you should make an appointment to see your MP at surgery. Doesn’t matter if you voted for him/her or not, they are still your MP… and a letter from them to the housing can work magic! Details of MP surgery will be online. They all hold them at least once a month.
Letter from GP also helps.
I’ll shut up now Jon. Don’t want you to feel pressured. Very very hard making big life decisions with MS and fully understand if you prefer to take it slowly.
Yes Pat I get DLA the higher level on both mobility and care I was so pleased when I was awarded that as being unemployed the extra money really helps and I have managed to save quite a lot
Hello Jon, sorry to hear of your plight with the shower as I once had the same problems though fortunately I then had a proper wet room installed with grab rails galore which helped, but I still managed to fall a couple of times - certainly a treacherous environment!
You need to get in touch with an occupational therapist or an MS nurse as soon as possible before the inevitable happens, they should supply you with at least a shower chair in the interim period.
My 1st appointment with an MS nurse isn’t until Sept, I saw my GP today who will be contacting my neurolist and a local O.T so hopefully something will come from that. My main problem will be still living at home with my mum.
Maybe when I get to see a O.T he/she will be able to help somehow.I just hope I can sort my own place out on a ground floor soon.
Hi Jon, yes OT might be able to do something. Really explain how depressing it is for you and how you need your own place. If they can’t do something directly (which they might be able to) they can probably refer to social worker who can help.
Thanks Pat, I spoke to my GP today and she is gonna get in touch with my neuro and local OT and will request a referal so as usual it is simply a waiting game…