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Hello again

Haven’t been on here for ages, as I spend so much time on the Ileostomy Association site. I’m now in secondary progressive stage, so no more dramatic relapses -just not able to do much -can stand up but not walk further than round the house and not allowed to drive so somewhat isolated. Do others find that people assume, if you can stand, you can walk?? I love wildlife but can no longer attend local gatherings of moth, flower, bird etc enthusiasts. Hospital supplied a wheelchair some years ago, but, unfortunately they didn’t supply anyone to push it and the family-and-friends network is not there in my case. How do you get people to realise that you can’t do what “normal” people can when you look able-bodied?

Hi, sorry you fell so isolated. Is there not a local MS society in your area that could give you some support? Even if they just get you out and about occasionally, it would be worth it. Could the OT or physio organise an electric wheelchair for you so you could get yourself out a bit? There is nothing worse than being lonely.

Boo

hi belinda

i’m so sorry to hear that you are feeling so isolated. its a lonely journey this ms!

is there no-one in your nature enthusiasts group who could push you in your chair?

a friend with ms has an allowance from DWP for someone to take him out socially. have you got this? if not, it may be worth applying for it.

could your local branch of the ms society help?

meanwhile watch all the nature programmes on telly!

luv and hugs

carole xx

Welcome back Belinda.

Boo has given you good advice.

I have nothing to add but thought i would just say hello. Getting an electric wheelchair would make such a huge difference to your life so take the plunge and make some calls today.

You have nothing to lose.

Best wishes

Teresa. x

Thanks, lovely people. Electric wheelchair wouldn’t stand a chance in my lane and am quite a distance from shops etc anyway. I did have an electric buggy once -have had MS for 50 years - but got stuck down a pot-hole! Am in the local MS group but like many of you I’m sure, I get worn out just planning to get to meetings. It’s the old story of wanting company, but not being able to cope with it. Thanks for listening to my whingeing though.

Belinda,

Would it be possible for your nature enthusiast group of friends to come to your home every now and then so you can still be involved? Even if its just a couple of people at a time?

I’m sure they would understand and be happy to help if they knew your circumstances even if you had to cancel last minute if you didn’t feel up to it. If you explain i’m sure they would help so you can be involved and not so isolated.

You could also just invite them round for coffee and a chat (open invitation) and ask them to call you first to make sure you are up for visitors. You may be surprised who would like to pop in for a chat.

Have you got any nice neighbours? I have an elderly couple near me and they are fantastic - i was ill recently and they went to the chemist for me and i help them out also when they need me. They pop in all the time. The funny thing is that i am 40 and they are late 70’s!

I’d pop in myself especially if there was a piece of cake in the offering! lol!!

Teresa, x

Hi Belinda,

So sorry you are so isolated, thanks to this ‘wonderful’ (NOT!) disease.

Have you tried asking Social Services for advice, assistance?

A carer a few times a week to help you get out and about; I am sure this would make the world of difference to you.

Until you find a solution, I am sure this forum will help with advice or even just a place to offload.

Take care

Clare

Thanks again. Naturalists group are all online so not “real” people. Neighbours both sides have made it clear they don’t want to be friendly -pity cos I’ve always had lovely neighbours up until now. Have carers coming in to help with bathing, shopping etc but very strict rules on mixing socially and certainly no trips out, though I used to be allowed to go with them in the car to the shop, but not now. Live with brother (no other family) who has car, but he uses it for business and not for taking me out- rather for getting away from the house than anything else, and won’t be seen with my blue badge in it. We lead very seperate lives!

Hi Belinda

There should be ways of improving this situation for you.

Claire suggestion of contacting Social Services is a good one, I did know someone with MS for whom Social Services provided a ‘companion’

Your GP might also be able to refer you to sources of help.

The MS helpline 0808 800 8000 might also be able to make helpful suggestions.

Good Luck!

Anne x

Thanks all for suggestions. Wish I could ride a bike, then I could go on the roads but vision and balance not good enough. Think I’ll have to design an electric trike so don’t have to pedal. Wonder what DVLA would say to that. :o)

Belinda, can I ask you about these rules your carers seem to have to follow? I have 3 carers besides my hubby and they take me out socially, as part of my care plan. I would go crazy if I couldn`t get out.

They take me shopping, lunching, swimming, to the theatre if there is something I`d like to see.

My care plan manager (Direct Payments) says it is an important part of my well being to get out of the house. Plus it gives hubby a break.

luv Pollx

Hi Pollx -maybe Direct Payments makes a difference. Mine are Social Services, now done through an agency. Nobody has ever asked if I can get out or not, though the carers know I can’t. They are supposed to stay for an hour, but are off like lightning once I’m bathed. My private cleaning lady is very kind and I pay her to go shopping at M&S in town and sometimes go with her, if only to sit in the car-park and have a change of scenery. My MS nurse just says I should get taxis as am on highest rate of DLA mobility, but not really safe on my own as balance is so dodgy and eyesight unpredictable. End of rant. Havent gone crazy staying in yet, but often feel I might do. Suppose I’m resigned to it now. Ce sera sera, and all that. Thanks for kindness. It means a lot.xxx

Hi Belinda,

I to have SPMS and like you I cannot walk very far, hang on to furniture around the house and got fed up being stuck indoors, so I bought myself a mobility scooter. It’s super, I can go where I want when I want.

Just another idea to play with.

Wish you the very best

Janet

x

Hi Janet and thanks. I did have a mobility scooter but live in a lane where the pavement is full of pot-holes and very narrow so gave it to another MS-er who has wide pavements and shops nearby. Daren’t take one on the road as no 3D vision, which is why DVLA banned driving. Scooter would be marvellous to use in town, but how to get to town? Sorry to be so negative but really have explored all the possibilities. How long have you had SPMS? In some ways it’s so much better than R/R but seems to bring its own problems! Thanks again. Belinda. x

Just wanted to say HELLO BELINDA, and welcome back. Please dont feel cut off from the world when you have us to talk to.

Yes an electric wheelchair is needed, plus social events which your local ms branch should provide. If not look into other disabled organisations and ask what they do and when they meet.

Please dont see disability as ‘cant take part’, even though youll have to seek yourself, you may find groups you didnt know existed and please do apply for a grant for an electric wheelchair or scooter to get you around your locality. Its good to go shopping, meet others, and just motor short distances, you will find a new freedom.

Welcome back again,

bren

xx