Patients Multiple sclerosis
Topic of the discussion
Posted on 19/09/2017 12:12
I'd like to ask you how you've been coping with your everyday life since the MS diagnosis?
What has changed? Or is it just the same, save for the times you have flare-ups?
Are there any daily tasks you do no longer or you do less due to your MS? Like cleaning the house, doing hobbies, going shopping, leisure time, family gatherings and events, playing with your children or grandchildren?
Thank you all for sharing your experience and being there for one another!
Beginning of the discussion - 19/09/2017Everyday tasks with MS https://www.carenity.co.uk/forum/multiple-sclerosis/living-with-multiple-sclerosis/everyday-tasks-with-ms-1963
Posted on 19/09/2017 12:24
During a flare I can't do much, but otherwise, I haven't changed anything in my daily life. I still do the things about the house, and my hobbies, and everything... How hard can it get if you have to give up some of your activities??
Posted on 23/09/2017 11:42
Unfortunately my life has Changed Immersiblely. I have lost the use of my dominant Hand so cannot write, find reading difficult as I cannot hold book for any time. I am using a rollator to get around the house and a scooter for outside.i was,on Tysabri for 2 years but got a bad reaction so was taken off that Treatment and nothing else offer d. I am now truing to get my doctor to refer me to Queens square London
Posted on 25/09/2017 22:28
Unfortunately my life's changed ... gone from a really active person who couldn't sit on her bum to a less energetic bundle of a person, constantly having to have rest periods throughout the day so I can last from morning till night without overdoing things. My writing is messy, legs won't do long walks, and my energy levels plummet too quickly! Hey ho the joys of my ms
Posted on 26/09/2017 10:42
Agree.all of the above. But hopefully I will get no more "attacks " I can just about cope.
Posted on 02/10/2017 13:28
I think my RR has probably changed to secondary progressive. Haven’t had a relapse for a while but am definitely not recovering. I can’t (dare not) go out on my own in case I can’t reach my destination. I try to stay active but it is complicated
Posted on 02/10/2017 14:35
Posted on 20/11/2017 15:24
My wife has relapsing remitting secondary progressive MS. She was originally diagnosed with relapsing remitting in 2007 but re diagnosed 3 years ago.
she has gone from being able to walk and work To now being in an electric wheelchair needing help to do every aspect of personal care from me. She can’t work so I’m looking after the day to day running of the house, put children and working and caring for her.
She is finding everything a huge challenge and has new symptoms most weeks.
The boredom of everyday and the frustration of not being able to help do everyday chores oand having to ask for help to do things like have her leg moved from one position to another is soul destroying to her.
and the worse part is she’s not for dmts now due to nice guidelines stating she must be able to walk ten metres so she just feels she’s left in the corner by
Posted on 24/02/2018 11:38
My relapsing remitting MS changed to secondary progressive a few years back now. I can’t use my dominant hand anymore or feel my fingers. I no longer do housework all the laundry (I have to pay people to do these tasks ) I can no longer read properly, as I cannot concentrate but I stay upbeat, because at least I woke up this morning.
Posted on 14/03/2018 16:21
Hi @Vickstar @Helenski @Willpim @Fallgallinda there is a special discussion for Secondary Progressive MS now right here: https://member.carenity.co.ukhttps://www.carenity.co.uk/forum/other-discussions/living-with-multiple-sclerosis/secondary-progressive-ms-spms-2178
So you are welcome to share your experience and discuss managing this particular type of MS. Hope it will be of use!