Can anyone advise?

Everyday living
1

Hi all, I’m new to this site…in fact I’m new to anything like this…

I got diagnosed with relapsing and remitting MS in Jul06, I thought I had been through the grief cycle yet only today after feeling utterly useless I was in floods of tears about my MS. I feel a bit emotional writing this because up until now I have never joined anything ‘MS’y’ for ‘fear’ of knowing what I’ll become like. I really don’t wish to offend anyone by saying that - more that I have just tried to treat my illness by being an ostrich with its head in the sand.

I’m 31 and three months after my first child was born (I have two aged 6 and 4) I was diagnosed. In my time I’ve been 90% blind (not thinking I’d see my children sent me to a very dark space), deaf in my left ear, talked weird because my tongue muscles wouldn’t work, paralysed in my right leg for 8 weeks, semi-hemispheric sensory loss in the left half of my body and I suffered primary fatigue. Now I suffer fatigue every day and although the above symptoms are now all gone I still find it rears its ugly head and reminds me by making my leg (for eg) weak. I also feel like I need iron rods in my body to keep it upright sometimes and can’t walk more than 50m without stumbling and feeling drunk.

I know I’m stupid; 8 years ago they told me to do core excersises and not wanting to believe I had MS I didn’t do them, and now, when I want to do them I’m in a catch 22 cycle of the more I don’t do them I feel rubbish but when I do them it wears me out so I stop and then I feel more rubbish. (Geddit?)

I sometimes get the impression that people around me don’t think I’m determined enough to fight this disease, but I wake everyday, look into the faces of my children, and hate and wonder what the future holds for them. I’ve been given odds of 1 in 5 of being in a wheelchair at 50 and I DO NOT WANT THIS TO HAPPEN. I hate what I have, I hate my limitations and I hate what I will become through the illness. I NEVER want it to impact my children and husband but it is more and more.

My 60yr old mother is one of my primary carers. What would we all do without our parents? But at the same time do you know how degrading it is for me that she has more energy then me?

I’ve finally joined a site like this to try to get a bit of support from other sufferers. There are no answers and no fixes but maybe, just maybe, this will stop me still feeling like I’m in denial and upset.

Please help me try to learn to live with what I have and try to like myself for having it. I’m not depressed - not even close (although it may sound it!!) - but I just think I’m at a point now where a little support wouldn’t go amiss.

Anyone have any sage words of advice for me?

Sorry for the sob story - and thanks. N

2

Well hello friend and welcome to the forum.

We are a hugely mixed bunch of people here.

Our conditions aren`t all MS, but something quite similar.

Some of us were diagnosed early on and others, like me, are still awaiting that elusive diagnosis. (14 yrs and counting for me).

But whatever we feel like, no matter how rotten a day were having, rest assured......there will be another person here who knows exactly what youre talking about!

As I said, I`ve been on this unending rollercoaster for a long time. In the beginning (I fell over a lot) i cried, I swore, I ranted, I googled.

I am the sort of person who likes to know what something can do, rather than wait until that thing happens. Hubby hates this about me and says I am my own worst enemy. Thats probably quite true.......but thats how I tick!

So, a few years after diagnosis, you now suddenly feel distraught. Can you think of anything which might have triggered these feelings? It could be the fact that as your children grow, you feel unable to keep up with them. Or might it be that as your mum ages, you worry looking after you will become too much for her?

You may not be able to think of a reason for your feelings today…there doesn`t have to be a reason…our bodies work in very mysterious ways…with or without something like MS.

Now I`m gonna talk about the very thing you hate the thought of…and hope I am able to soothe your mind about it…well maybe just a tad, eh?..

Its the w` word…wheelchair. I prefer to call it a wheelie. Within a year of my falling over and hurting myself a lot, I needed a wheelie part time…going out of the house for longish times.

I have now been a full time wheelie for 8 yrs. Is it the end of the world? No.

Do I feel less important than anyone else? No.

Am I still me? Of course I am.

Do I depend on others? Yes, I chuffin` well do.

Sadly we cant escape our illnesses and when they cant even give you a proper name for it, that`s doubly cruel.

Please try to live the best life you can. If things are just too tough, ask for help.

I know I`ve prattled on at length, but I just wanna help you, hun.

much luv, Polly xx

3

Hello Draken,

There is no ‘right time’ to really come to terms with having MS and to feel guilty is really doing yourself a disservice. Perhaps you might benefit from having some antidepressants. I know that I am on them and I have been for years. And don’t worry one second about having a good old moan about having MS - anyone who has MS knows exactly how you feel, and the only people that won’t understand obviously haven’t got it. If you ever fancy doing a few core muscle exercises you might tike to tinker with some Pilates, and you can stop them at any point.

Take care,

Moira

4

Dear N

Things might not become as bad as you imagine. Many of us carry on with our lives with a few adjustments here and there. Certainly I am able to do a lot of things that I used to be able to do, and I am now 18 years down the line. I work full time and do things in normal life.

I don’t know how much my diet has helped but I researched diet from square one and stuck with it gluten free plus vitamins.

There have been times just like the ones you describe but not permanent.

Wishing you great fortune ahead. Life can still be rewarding, even after the huge shock we have all had.

Mark

5

Your post has so many things that mirror my situation that i could have written it myself.

Welcome to the site

It took me ages to come onto this site - i was petrified of finding out what might happen to me. I found it hard to face it head on. I dug my head in the sand and hoped it would all go away. Unfortunately it didn’t. Everyone deals with a diagnosis differently.

I was diagnosed in March 2005 (6 months after the birth of my second child). I went on the dmd in September 2005. Are you on a dmd?

At diagnosis my first thoughts were all about my kids and how would i manage?

When i plucked up the courage to come on this site - i just lurked in the background for quite a while. It took me ages to post.

I now however wish i had come on here much earlier - there is so much help/support/advice on here it is amazing. I feel people on here are my friends but i have never met anyone.

I do not find the support i need from anywhere else. Family/friends try to understand but they really don’t get it at all - why? - because they don’t have the condition and all that comes with it.

Not everyone gets the same symptoms but i can assure you there is always someone who can help/give advice on here.

Have you got an ms nurse you can talk to about your symptoms? You may need some help with those. There is medication for fatigue for example.

My mother is 60 and has diabetes and because i am struggling at the mo - she is doing loads of stuff for me - yes i feel really guilty but she assures me she is happy to help. Sometimes we have to accept there are times when we just have to give in and not be so independant. (stubborn in my case).

If you can do something about the fatigue then you should be able to get back to the core exercises. I saw a neuro physiotherapist for 6 months to help with balance.

I feel like i know you! - have you stolen my identity? LOL! LOL!

I know what you need at the moment - (((hugs))) from people who understand.

Dont be scared to post for help - you have written about several things in one post. It might be a good idea to break them down into several separate posts to get the best possible help and advice.

Look forward to ‘chatting’

Best wishes

Teresa.x

6

Hello and Welcome

When I was newly MSed I used to go to a local MS Treatment Centre for physio but I had to stop going because of the people in wheelchairs. It was just too much to look at what might happen, I didn’t want to know. I was not prepared to even consider that it might happen to me. I remember thinking at the time that the worst things that could happen would be that I would ;
a) need special housing b) not be able to read and c)need a wheelchair.

Well, all 3 have come to pass.
a) I live in an OAP bungalow (I’m 57) but I LOVE it
b) my double vision makes reading too hard so I listen to audio books
c) The dreaded wheelchair. Unlike Poll I don’t need mine 24/7 but I use it outside. I don’t know where to start telling you that it’s OK. More than OK. I promise it is NOT the end of the world.
The end of the world for me would be not to have had the love and support of my daughter. She was 11 when I was dx so she’s grown up with an increasingly disabled mum but I think I gave her a good childhood and I’m waiting with anticipation for my first grandchild now.

I wanted to tell you this because I think I probably fit your “worst case scenario” but I’m not a poster girl for what will happen to you. You’ll get lots of answers from the “walking and working” clan. I just wanted to say that even if a wheelchair clanks into your life – you will be fine.

The other thing I wanted to say was that you CANT fight this disease so stop trying. Nothing that happens is your fault – not doing physio or not eating your greens etc will make a spit of real difference. What you can influence is your attitude to things. Rest when you need to and use tools (eg walking sticks) if you need them and stop worrying about the impact on your family. Your family loves you – they will cope.

Jane

7

Joining this site in the early stages of the worst MS year of my life proved a godsend. Not only did I get better and quicker advice on here than from my MS nurse, I joined a community where I felt I belonged and that everyone understood without me having to explain almost at all. I’ve also made some wonderful friends who I know I will be e-gossiping with forever! It was a weird experience for me because, like you, I’d avoided anything MSey since diagnosis years before, but it was the right time and I’m so glad I did. I hope you will be too.

So hello, and welcome!

Karen x

8

Hi N and welcome. Your fears are the fears many of us have had, as are your worries for the future. We understand these and support each other.

MS is such a horrid disease, but it is something we have to live with and we have to make the most of our lives. Please don’t worry too much about the future and live for today and enjoy your family now.

I’ve had MS a very, very long time, but it has not stopped me travelling the world, having children (grown up now, but I was diagnosed before they were born) and having a career.

Oh and the wheelchair dilemma - yes I’m in a wheelchair now (since 4 years ago) but I love it because it allows me to get around and still participate in life and I still work full time. I’m not saying it isn’t hard at times, but what makes having MS easier is the many friends I’ve made on this site who have support me and me them.

So enjoy the site and let us know your joys and woes and we’ll be there for you.

(((((Hugs)))))) Mary

9

Hi, my first time here today. just reading all posts wow !! all my thoughts in print at one time or another.

my main problem is being diagnosed with MS and then just basically abandoned by health service and housing.

who very kindly gave me a 3 bedroom house for me and family. THAT’S RIDDLED WITH ASBESTOS IN 4 WALLS AND CEILING IN LIVING ROOM, they have plastered over it 2yrs later refusing to remove it because not damaged enough or airborn. But i gotta be careful if wanna put shelf or anything up. gotta wait for them to come out to use paste on wall to catch dust so 3 yrs later might have shelf. Also rewiring and gas central heating all suppose to have been done but hasn’t i still have blow air heating noone else has it now. No work will or has been done in my house because asbestos under layer of plaster in front room. took them nearly 2 yrs to put concrete in garden so we cud put shed up for mobilty scooter as it was parked in my front room.

MS medication because one did try no good for me not offered anything else so i have had to look after myself because noone else gives a damn.

BY THE WAY THEY KNEW HAD ASBESTOS IN IT BEFORE GIVING IT TO ME WITHOUT WARNING ME OR ELSE I WUDN’T HAVE TAKEN IT.

SORRY BUT AT MOMENT NHS AND OTHER LOCAL AUTHORITIES ARE USELESS.

SORRY but i’ve had enough of all there bull they say they care for disabled but need to show it, 10 YRS of MS with no help from anywhere had to try do myself.

10

Its a good job i am a fighter as well as stubborn. And they wonder why we get frustrated and angry even depressed.

they cause most of it.

11

I hate what it’s done to me. More than that I hate what it’s going to do to me. I feel sad to think of all the things this has robbed me of in my future. however whether i like it or not is immaterial to whether it’s going to happen or not - if it’s going to happen, it damn well will, so fretting is not going to affect the future. it will rob me of my present though.

i have times when I feel so down, it’s unbeleivable. I now accept there will be times I will just feel sad and there is no point fighting it. At least I have stopped apologising to my family - I used to do this inccessantly - it is not my fault so I have nothing to apologise for. But I do regret that this has happened and has changed our lives for ever - just I don’t blame myself any more. neither should you.

I try to remember that things might get worse so I should not put things off - like your pilates - it will never get easier so have a go. I have regrets that I didn’t do some things cos they were difficult - well now I have no choice as I cannot do them if I wanted to. So I should have had a go.

As for your children - mine have been SO understanding and say they would rather do something a new way than not do it at all - as long as we still do things together is all that matters to them. So walks or shopping with Mum in a wheelchair or scooter is great as far as they are concerned. I am sure your children lovve you in just the same way.

12

Hi all…this is Draken - Nic actually!! But Ive had real problems with this site letting me log on so I have temporarily created a new account (even though half of you wont see this) to briefly reply and Im gonna try and sort it tomorrow…although its the.school hols and dont know how much I’ll get done! Thank you all so so much for your kind words. It meant so much to me and opened my eyes that if I end up in a wheelchair its not the end of the world. I’m defo not depressed…and yes I feel like friends with all of you out there that said it. Right…no more till Ive sorted out issues. Ive put in username Draken but.its not recognising it no matter how many passwords I request…so we’ll see. Ive logged in now as a one time password request but when I log out it doesnt let me back in. So…please bear with me…Im not ignoring you but this might take me a few days to sort…but i will be back!! xxxx

13

hi nic

i totally understand where you’re coming from.

i was dx in 2008 at age 50. now i’m plodding on (good description - plod/stumble)

as well as the community on this forum i go to trafford ms therapy centre (about 18 miles away). now that is a fantastic place where we can have HBOT (oxygen), all sorts of other therapies and a great crowd of people. the wheelchair users are a good role model for when it happens to me. i have accepted that i will need a wheelie one of these days but i just think of the people i have met who use one and still keep smiling.

my sons were ages 20 and 21 when i was dx and they have been fantastic. i can confide in them when i’m feeling really down. this week i developed a nasty painful rash on my neck, my legs are always painful and wonky but my arms and hands were hurting too. i told billy (now 23) and he gave me a hug and suggested that i should try getting drunk! which i duly did. i had a good old laugh in the pub and although my aches and pains were still there, i was in a happier mood.

so don’t beat yourself up, you’re allowed to feel despondent but only for a short while. the knack is picking yourself up again.

try out your local ms society group and see if you have a local ms therapy centre. i hope you find one with a happy crowd of msers.

love carole xx

14

You have had some wonderfully supportive and caring responses from members of this special community of people.

I hope that goes someway to proving to you that they body may at times not live up to your expectations but the mind and soul is still there…and these posts prove that.

I wish you well,and are you in a relapse at the moment which has brought everything back into stark focus?

Pip