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Tips/Advice on how to feel less trapped

Hi,

I’m a 25 year old with type 1 diabetes and relapse-remitting MS. I was diagnosed with MS March 2014 and it hit me quite hard, I will have been on Tysabri IV infusions for a year come June because the neuro considered my MS to be quite active.

I experience double vision when I’m warm/stressed, I have nystagmus, fatigue, pain sensitivity and balance issues. I seem to be okay when I am sitting down but if I take a trip into town I end up feeling awful. The combination of people and walking leads me to feel dizzy and exhausted. I have a wheelchair but struggle to self-propel, the pavements are awful and I live in a hilly area so I often have to get out of my wheelchair and walk anyway.

I would love to get a car and ideally move somewhere a little easier to navigate but this isn’t an option right now. Any ideas on what could make life feel a bit easier? I end up feeling so trapped and regret going outside the house every time I do.

Thanks in advance

Hi, oh I do feel sorry when I read about anyone really struggling…more so when its someone young.

What about changing to an electric chair or scooter. I used a scooter as well as an electric wheelie, and definitely felt less disabled on the scooter, for some years.

Do you qualify for the high mobility rate of DLA or PIP? Have you thought about getting wheels via Motability?

My current wheelie is from them, as wheelchair services had a massive waiting list.

Also, maybe think about Direct Payments to pay for a carer to go out with you, to make you feel safer, eh?

Love Pollx

Like what Poll said, plus, contact your local Wheelchair Services and see if you can change your current chair for an electric one. Or, does your local area have a Dial a Ride service? If so, you may be able to get picked up from home & taken out then delivered back. They usually have wheelchair accessible vehicles and they exist to ensure people don’t get socially excluded. it must be hell to be young and feel isolated.

Sue

Do try and get a scooter - You could always try one at your local shopmobility centre. They will give you some tuition on how to use them.

The middle range scooters are stable - and can do 4- and 8mph.

TGA do some really good ones and often have some good secondhand ones. So don’t pay out too much.

You should qualify for high rate mobility - and maybe some of the personal care as well. lt is worth joining benefitsandwork site for help with getting benefits. They will help you to fill in and answer the questions.

l have never used my mobility allowance to get a vehicle - l find it more expensive - and would rather keep my monthly income from them.

To be independent - get out when you want to - especially with a scooter that is road-worthy - lights/hazards etc will make such a difference to your outlook.

Ask for a Occupational Therapist to come and look at your home - and see if they could do anything to help make it easier for you.Even help you to find somewhere more suitable for you. Always make sure that you tell them how you feel - as if it was your worst day. Nobody can see MS - so its up to you to demonstrate how bad it is for you.

All of the above plus laughter, if you heard me laugh at everything you would think I was mad but you can’t let it win.

I third fourth and fifth the scooter idea. You can park it up and walk round a store if you like and just use it to get from A to B. If you live in a hilly area make sure that you get one that can cope with the slopes! Some of the cheaper pavement scooters will only cope on the flat. (I don’t mean that you need an all terrain one like a tramper just something with a bit of oomph)

The problem with the Access bus (called dial and ride in some areas) is that they are predominantly used by old people so you would need to prepare yourself for riding the pensioner express. However even if it’s only a trip to a local supermarket it gets you out of the house every week. My friend is in a self propelled wheelchair, when she arrives at Morrisons they provide someone to push her round the store. I used to use the access bus every week and found it was a link to life outside my own front door.

Jane

Hi,

Thank you so much for everyone who has replied, it certainly helps me not to feel so alone.

I have been looking into the Motability scheme and I think my partner and I will get a car, this would enable us so much. I’ll also look into the access bus (pensioner express is a great name!) and a scooter.

I think physio would be helpful and I may try to get referred to the service. I think there is an MS therapy centre in the next town and I would be able to get there if we manage to get a car, I agree that it could be alarming but I hope the benefits of that kind of centre may outweigh any fears I may have.

It means so much to feel supported by you all

I qualified for a wheelchair through Wheelchair Services but their indoor/outdoor ones can only really be used outdoors on smooth surfaces as they’re mainly for indoor use. When they brought a chair to my village for the outdoor assessment, they insisted I only use the pavement but the chair slid off the curb onto the road at one point as the chair couldn’t cope with the camber! The pavements in our village are very narrow and bumpy. I ended up getting a chair through Motability, one that goes 6 mph so is road legal. Costs me £50 per week from my PIP, but worth it. Never been 6 mph with it though as you feel every bump in the road and is incredibly uncomfy.

I have an indoor/outdoor chair from wheelchair services ( a quickie salsa) and it is definitely a use outside chair. It’s not road legal but I only want to use it on the pavement anyway. It copes admirably with the cobbles in my old market town. I was very specific about my need to use the chair outdoors on uneven pavements and there was no trouble getting this type of chair prescribed - I suppose it’s the old post code lottery again (I’m in Leeds)