Hello my name is Gillian I am a middle-aged lady currently fighting a battle against MS. I have had MS for around 16 years, with on top of asthma since I was born. I am new around these forums and I am interested in what other people’s views are about MS and what your life style is like with it. Please send me a PM or give me your thoughts on it here. Greatly appreciated!
in a word my experience of life with ms is SLOW!
i used to be always dashing about but now i haven’t got a dash in me.
apart from annoying everyone with my slowness i’m doing ok.
carole x
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It seems to be different for everyone. I’ve had it for 20 yrs, but only diagnosed in April. I seem to be very lucky, so far, in that I have minimal symptoms. Had double vision back in January which is about 90% better and I’m not on any treatment. I do however have tiredness, brain fog and slowed thinking. I fully expect deterioration over time tho but will deal with it when it happens
julia
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Hi Gillian, your post title is making me wonder if you could do with an assessment from social services to organise some help.
I have carers and they are paid for by Direct Payments.
My hubby was my sole carer for 11 years and it took it`s toll on both of us.
But we`ve had marvellous help for 5 years now and it is really good.
Would you like to know anymore about it?
pollx
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Thank you for replying. Most apperciated.
I have similar symptoms, I know what you mean I personally have brain freezing quite a lot and I get tiredness very quickly and I feel like I have been hit by a bus all the time. Thank you for the reply. PS. Love the photo of the cat!
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Hello, I would like more info about it. I do have a question about something - is it possible for me to get a grant for my bathroom? And other benefits I can be entitled to. Thanks!
~Gillian
Hello Gillian, funnily enough we share the same name, although most people call me Gill nowadays. I have been aware of having MS for 30 years now. It is Secondary Progressive and really wearing me down at the moment. I am slowing up and not the person I want to be, or used to be. I have up days and down days emotionally but am trying to keep going, supported by very good care from the MS team at my local hospital.
I am afraid I can’t help about grants/benefits. I expects others will reply on that aspect.
My worst problems are mobility and balance, pain, fatigue and issues around worrying about bladder/urgency.
Gill
Hi again…
Yeh, if you would like to see if you are entitled to Direct Payments to pay for care, like I do, you need to ask Social Services for an assessment. There can be long waitinglists, but hang in there, it’s worth it.
As regards getting financial help for a new bathroom, you have to ask for an assessment from an Occupational Therapist. Again, waiting lists have to be joined! My OT said my bathroom was inadequate and put me forward, on fast track, for the cost of a wetroom. The grant is called a Disabled Facilities Grant…DFG.
I waited ages and was still way down the list, so ended up getting a bank loan!
I don’t mean to sound negative, but if your area has shorter waiting times, it’s worth applying.
I paid carers, who get me up, showered etc and take me out and on short breaks.
It gives me and my hubby time apart, which is very helpful!
Pollx
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Thanks Gill. His name is Tom and he was rescued from awful circumstances 2 yrs ago
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