What would you like others to know?

Everyday living
21

I would like others to know… that my ms is unique to me,just because the person they know whos hardly affected and climbs mountains or runs marathons,and lives a normal life,or is paralised from the neck down,and cant speak,

i can function at my own pace,i have to take my time doing things,and i am very limited in what i STILL can do,i will keep going for as long as i can,and when i say i cant do something its because i cant do it,not because i am too lazy…

22

Hiya guys

Thanks a lot for all the replies, I can’t guarantee I’d be able to get them all across but I will try my best!

Thanks

Zak

23

Hi Zak

I would like to add the cognitive changes to the list some days my brain and memory retention capabilities are normal other days I Can’t remember what was said 5 mins before. I have RRMS and had to give up working as a nurse because of this as well as pain fatigue and bladder and bowel issues. There is the numbness and muscle spasms including MS hug and people tell you that you are looking very well!!!

MS is a very individual illnesses we are all affected according to which part of our brain is being damaged. At this point in time it remains incurable and is progressive.

Good luck with the tour it is very much needed.

Jude.x

24

Hi Zak, people don’t understand that things take a whole lot of time longer,showering, just moving somtimes, getting in and out of bed and general everyday living. I can no longer be spontaneous, everything has to be planned and stuck to as a change in any plans just go out the window (we need time to adjust and act)! All of the seperate symptoms that go with MS have to be dealt with just about seperately and take time. I just say this disease is so time consuming and most people I speak to have known me since I was well and we are all on a steep learning curve. I’m extremely lucky, most people understand and the ones that don’t well I hope they never have to experience this because they will suffer all the negativity that we come across from people that don’t get it. Isn’t MS wonderful (not). Linda x