getting life back to normality and knowing it will change again.

Everyday living
1

Just thought id share and ask others how they manage life with ms. I was diagnoised in october after my first attack where I couldn’t use my left arm and hand. This resolved but the fatigue was

Awful. I then had problems with both legs, and couldnt walk from one room to the next with pain and at various time limped in both legs, had spasms and toes moving independently, which was very werid. I had

a new mri in january which showed that there was no enhanced lesions and that that some of the lesions were less conspicuous, so my neuro said I hadn’t relapsed again and that he thought these issues and pain was physiological…which I didn’t agree with. I had cbt and my therapist after 2 months of meeting me has written to say this isnt health related anxiety at all. I saw a 2nd neurologist who thought id had 2 or 3 relapses. Im due another mri in july to then discuss dmd with my neurologist.

I finally have the pain under control and am almost back to normal. We have tried to change our life style, im now not working, my husband has changed jobs to be more local. We have got a puppy ( I said to my physiologist that I would get a dog and walk it). We are getting our house fininshed and we are making sure our children are getting the support they need after not beeing able to do much with them for months. Im now feeling that im very Lucky to not have any major symptoms left. I still get tired, hurt and have sensory things but I can live day to day and I sometimes feel happy and then I remember. My husband is great but wants me to live day to day and not worry about the future but ms comes into everything and sometime I just think im in self denial abit and hoping it wont happen again. I know it will and this is such a scary place to be in, I cant cope with the fact that im just going to get worse and worse and not be able to function as a mother in the same way i do now.I look at all the reasearch and i am looking at all the trials, diets , vitamins etc and trying to do everything to help myself but at the end of the day there is no cure. Im trying to enjoy everyday but im more appreciative of each day which is different to enjoying each day and being happy. Do others struggle with this feeling and how to you get though the mental aspect, knowing you are going to lose more over the years and not knowing if its tomorrow or in 2 years time… in one breath I feel thankful that im ok at the moment but in the next breath knowing it won’t last. I lost alot for months and I dont want it again but I know it will…help.

2

Hi Zoe

I feel exactly the same as you, thankful but scared! Im slowly getting better after 2 repalses earlier this year so things are feeling hopeful again but I now have a little girl and it really scares me whats going to happen in the future. I find I have a relapse, get a bit depressed and then I start to feel happier and more hopeful and like Ive come to terms with it all but then i go through the same process all over again next time i have a big relapse! My husband tells me not to worry about the future, it may not happen, it may not get that bad and he’s right, try to stay positive (i know its hard), enjoy every day you have and know that there’s always people out there who understand. One thing I have learnt is to ignore people who dont understand, be selfish and look after yourself and your family.

Take care

Catherine xx

3

Thank you Catherine for your kind words, I feel like a fraud writing the post as theres others with more issues than me at this present time but im just having a down day and needed reassurance that im doing ok xxxx

4

you have to live for for today.dont look back but dont look too forward either,i have had ms 21 years now,and i have had some very severe relapses that left me in bed for months, but i still managed to bring my 2 ( grown up) kids up alone,since i lost my husband in 1996,i always vowed that i wouldnt waste those years worrying about another relapse, and i didnt, i dealt with the relapses when they came,when i lost my husband,i then went 8 years without one,

my ms is quite bad now, and my lifes very limited,but i am so glad i didnt worry,about when the next one was going to come,i think you have to be realistic,but dont let it spoil what you have now.

jaki xx

5

I’m with your husband - and Jaki - on this one. You can only live day to day, and NOT worry about if or when the next attack will be, or how awful you’re going to be. You might be lucky, and never be severely affected, or it might be decades away. Or you might get something else entirely, nothing to do with MS. I know that’s not a very happy thought, but really, the whole of life’s a lottery. You might spend your whole time worrying about how dreadful MS is going to be, but that really not turn out to be the single biggest issue you will face, in the whole of a long life.

My dad used to have a saying: “Don’t worry, it may never happen”. And that is still true, even for those of us who already know we’re ill. The only thing certain about MS is that nothing is certain. It’s not inevitable that you “won’t be able to function as a mother” - lots of people with chronic illness (not just MS) are mothers and fathers.

And if we’re talking decades away - as we might well be - we could be talking grown-up children, who will have a completely different set of needs by then. You might not be pushing buggies or preparing family meals, but that won’t mean you’re not still their mum!

Don’t forget that family roles change anyway, over time. 6, 16, and 36 don’t all require the same parenting skills.

Tina

x

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Hi Zoe

Please don’t write yourself off yet. It’s still early days. My first year was awful, I was diagnosed after two relapses in quick succession and the second left me numb from the waist down and barely able to walk. I had IV steroids which got me walking but painfully slowly. The fatigue was horrendous, I was sleeping a lot, my legs were achy and painful and I honestly thought I would be left like that forever. It must have taken me at least six months before I noticed any real difference and it was so gradual that it took a while before I realised that I was improving. I then discovered yoga which really helped too.

Four years on, I have just had another relapse affecting my legs and I have learnt to take one day at a time and not to worry so much if it feels like one step forward two back. This relapse was not so severe anyway as I have been on DMDs (I chose Rebif) for almost four years.

Even if you can’t do physical activities with your children, you can still be there for them in other ways and they will appreciate that. Give them your time and attention. My son is 19 now and he constantly reassures me that he knows I am doing my best and it’s okay for me to go and rest when I need to and I should not feel guilty if our house does’t look like a show home. I’ve been a single mum since he was 2.5 and we are very close. Children can be much more astute than we think …

Take each day as it comes and treasure whatever time you can enjoy with your family. It doesn’t have to be adrenaline filled to count. Playing board games or cosying up and watching a film can be just as rewarding.

Tracey xx

7

I met an MSer eight years ago who was then in her late fifties. She was using a stick and riding a tricycle (couldn’t balance on a bicycle). After a couple of years, she stopped coming to the MS exercise class where I had met her and I lost touch with her. Last summer, I went to an art exhibition in her house and met her again. She told me that her condition had stopped getting worse and she had regained some function. She was still using one stick when out and about but not in the house and she was able to ride a normal bicycle. She was much more interested in talking about her art than about the disease she used to have.

MS is completely unpredictable - you could be one of the lucky ones and there is no point in being convinced that things are going to be bad for you. Like everyone else said above, you need to live for today - there’s no happiness anywhere else, for anyone, whether they have MS or not.

8

Hi Zoe, you sound to have got your head round all this, as best you can.

Being diagnosed with something as big, but unpredictable as MS, is enough to scare the pants off the most fearless and strongest of people. So well done you!

Ive had this particular set of health problems for 15 years now. In the beginning when I wondered what the chuff was going on, I often collapsed in floods of tears, never knowing what would go` next.

I was tested for MS, as I presented very typically PPMS. I progressed rapidly and needed a wheelchair within a couple of years. 1`ve been a full time wheelie, for 9 years. No-one wants to think how life would be in a wheelchair, but i see it as my legs and my best friend! Without it, I would be bed/house bound.

I dont have MS, but a similar, incurable condition. I know it will never improve, but i do the best I can and seek out help and equipment all the time. I pace myself, eat as well as I can, rest a lot and have the help of 3 carers, plus my hubby.

I use to be a go-getter, scared of nowt, worked full time in a senior position and ran slimming clubs too!

Life is much less hectic now and I take my time to do things. I notice things others don`t, as they rush along in life.

Being disabled has caused me to slow down and appreciate more than I used to.

My slogan is, I may be broken, but Im still here!`

Enjoy your life, look after yourself and those around you.

luv Pollx

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Thank you everyone im going to keep re reading all the posts everytime im having a bad day. Xx