Hi there, im struggling to get much enjoyment out of life as I can't go anywhere without a toilet. Would love to go for walks, to gigs etc.
Does anyone else have this problem? Does anything help?
Rachey
Thought people might be interested in this link, received by me from the MS Register.
Personal Independence Payment (PIP) is the new disability benefit that is replacing Disability Living Allowance (DLA) and they want to know more about how it’s affecting people with MS. They are particularly looking at the new 20 metre criteria for mobility support which means fewer people are receiving the highest rate.
Take the survey http://go.newvistalive.com/start/?jn=P18373&dS=1
They want to hear experiences from anyone currently navigating the PIP process or who is still on DLA, no matter what stage you are at. It should take around 20 minutes to complete and your responses will help the MS Society campaign for change across the whole of the UK.
The survey is being run by ICM Unlimited on behalf of the MS Society. So, if you have any questions about the survey please email the ICM Unlimited Research Team at mssociety@icmunlimited.com.
Your feedback will be completely confidential, and individual responses will not be attributable or made available to the MS Society, unless you give your specific consent.
You might receive an invite to this survey again, if you’re a member of the UK MS Society Campaigns Community or Shift MS but you only need to complete it once. Your views and experiences will help the MS Society call for a welfare system that makes sense for people with MS.
If you feel you need advice or support relating to issues raised in this survey you can contact the MS Society helpline on: 0808 800 8000 or via email: helpline@mssociety.org.uk.
The most challenging aspect of my situation ( FND with CFS but going back to neuro next month questioning MS again) is the fatigue.
I'm in my forties with a young daughter at primary school. I don't drive (never learned) and am no longer able to safely ride my bike, so the two mile round trip to school has become a disadvantage to my health.
So...I'm seriously thinking about getting a mobility scooter. I love the walk there and back but by the end of the week my symptoms have got worse, my legs turn to lead and the council must have re-surfaced the path in rice pudding! I just need help on the afternoon school run and during the rough weeks. I need to keep walking (with my trusty stick) but I'm tired of getting so tired from something I used to do with ease.
I still have a few weeks to wait before my CFS therapy and my 2nd neuro appointment but I can't wait. So I'm going to test-drive some tomorrow. Any tips?
saw doc yesterday ,i have a bladder infection,so started a course of antibiotics,my fatique is loads woorse,i could sleep for britain as well,hot flushes.iam under the eye doc for double vision due to go back in march to see him,the double vision has got woorse.is this ms playing up and having abit of a party ? any advice would be greatly appreciated.tc xx
I could not see how to anon so here goes.
I have to use tena lady due to a leakage issue........now I have an extra problem.......my urine 'wicks' it's way up between my cheeks & into that little dip at the top!
What on earth can I do about this...........please help, I feel dirty and self-conscious about it.
HCT xxx
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
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