Forum

living with ms

Hi, I was just sitting here and thinking about my ms and the interview with Amey Whinehouses mum on daybreak why is it when they interview someone with MS they try and paint a nice picture about it , she said i’ve had ms for 10years and still not in a wheelchair, but looking at her walking it looked like she could only walk a few yards so if she wanted to go any where out she would need some kind of aid i,e scooter wheel chair , don’t know why they kid them selfs i suppose we’ve all done is ALL I KNOW THIS MS IS LIVING HELL & totally F…D my life up & the people arond me …

I’m with you Anon was getting understanding and support from most people I have told about my DX until they saw the TV interviews this week. Things have changed a bit now.

DL xXx

I think trying to make people aware of MS does more harm than good,take for instance someone with very few problems with MS is on TV talking they would say that it hasnt had much impact on their lives and they can STILL do everything,people would look at them and think ‘oh it cant be that bad’

they dont show the people with MS who are really very ill,its like they shouldnt be mentioned,my MS is quite severe and has been since i became secondary progressive,but i have been compared to others with mild MS,and someone has said ‘well i know someone with MS, and SHE can still walk miles’ sort of implying that my MS is like this because i dont try hard enough,(if only they knew)

it would have annoyed me a few years ago, but i have learnt to just shrug remarks like that off now, i know that the newly diagnosed need hope, i am all for that,but at the same time i think you need to be realistic about it too,

when my ms was rr i lived a perfectly normal,energetic life,and put it to the back of my mind, because i COULD do,but over the years i have gradually got to the point where i can hardly stand now,i can walk a few steps on a good day,on my bad days i can hardly get out of bed,i am ALWAYS thankfull for what i still can do,and at times i get really down, but not for long,and i am proud of the way i cope with all that MS has thrown at me,so when i get the silly remarks, i just let it go over my head most of the time, anyway .

jaki xx

I know exactly what you mean. This week there have been lots of things on tv raising awareness of MS…BUT they ALL seem to be ‘Yes I’ve got MS and sometimes I can’t do much but most of the time I’m fine!’. Last night I saw a short clip of a lady in a gym doing a workout and explaining that sometimes she can’t do it as much because once a year or so she may have a relapse. Yes SOME people that have MS are like that but there are just as many if not more with both RR, PP and SP MS that can’t just carry on like that.

Why oh why don’t they speak to people who really struggle to function on a daily basis with it. I’ve got RR MS and realised after the first year that I’d NEVER be the same old me. Yes my MS is considered to be under control as I’m not having relapses every 6 weeks like I was, but I can’t even say I’m having a good week this week…I can say I’ve had a good day but that’s probably because I haven’t done anything. I struggle with my balance, memory, confussion and fatigue especially if I’m somewhere with more than 3 people or if I’m expected to be able to talk and make sense on a pretty much daily basis.

I’ve got used to life like this and love my life because of the people in it. I do my very best to get on with things and not complain or draw attention to myself and my illness, so that people not close to me don’t pick up that I’m struggling, but that doesn’t mean that life is ‘normal’ like it once was.

It’s no wonder that it’s so difficult for people when they’re claiming for benefits because they can’t work. All you want to say is come and have a day in my shoes and see if you would be able to function in ANY role…tell me what job I could do and I’ll go and do it!

Rant over!

Sue

x

I vowed years ago that if an article about ms came on I would just turn off or turn over to another channel. I find all the reports about it so annoying. How I hate ms awareness week, be glad when it’s over. Cheryl:-)

-I would like msers portrayed in daily life, not those with money and lots of help around. What about managing shopping without the funding to buy a scooter? What about those who care for others whilst having ms. What about those who cannot drive because they see double. I could go on and on - continence too - one cannot leave the house until sorted in some way.

Never ever is a disease portrayed for the majority who struggle to get help, get benefits they should automatically be entitled to, and get understanding from the larger public? Yes a good start by the mss but more must be added because now the government have made disability a scourge upon society we need to be more vocal, with down to earth stories from normal msers, not those with money, access to media and wealth.

In our daily lives we have to live with the unknown, we cannot all work, dont all have abilities we once had, no energy and nobody to pick up the pieces of our lives when all goes wrong.

I totally agree with you.

b

x

I have found the recent publicity rather frustrating too. It’s lovely to see MS’ers travelling the world and having a lovely time or someone that can stand up and hang a wash load out, but it doesn’t really help the rest of us who can’t do everyday things. Even my husband tells me I should keep pushing myself and get better…so what do other people think of me?

The short videos …walking with wellies full of sand, tea with boxing gloves and wearing a corset up stairs are a great idea…but I feel like all of these things added together and more sum up how I feel on an everyday basis!