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MS, How do you deal cope with it?

Hi guys, hope you are as best as can be.

Been a very long time since my last post, with the new update my account was lost and what not.

Since the last post, I have had a total of 5 steroid doses in just over a year since diagnosis, diagnosed with osteoporosis and had an episode of bells palsy, BUT I do not wish to give up because it can always be a lot worse!

I am still at college, and a lot of my friends and people I have met suddenly saw me in college walking with a crutch, and missing out on a lot of college. I want them to get an understanding of what MS is, and have put my name down to hold and event to carry out a presentation on multiple sclerosis, how it affects us and how specifically how it has changed my life. And I want to urge the “norm” to make the most of what they have, to avoid the dissapointment if something like this ever happened!

And for that I need your help! Please!? This is my first question I would like to know, I guess for more than just the presentation, I have only discussed this with someone who I see fairly regularly, but his MS is much less crazy unlike mine! How do you cope, with the worry of a relapse, or even worse disability, things that you used to love and can no longer do, How do you psychologically and mentally keep going? I would like to know, might help me if I take a few tips, and may even help all of us.

Sorry if something like this has been posted before, haven’t been on for ages, but it does feel good to be back!!

Best wishes

Zak.

Hi Zak

I live from day to day and don’t worry about when the next relapse will be. I’ve lost so much to MS (my sense of taste and smell, my ability to walk, along with other more unsavoury aspect of bladder and bowel control) but and heres the but…

I’m alive and love life and would like to continue to live it for as long as I can. So yes I have MS and yes it has impacted upon my life but I’ve had it for many years and have lived a full life. Before I lost my mobility I travelled te world, climbed mountains and pushed myself to the limits burning the candle at both ends and loved it.

I’ve had a sucessful career and am still working. Its more difficult now I’m in a wheelchair as people view me differently but that is there problem not mine… you see I’ve had MS for years but is wasn’t visible to others and they treated me as an able bodied well person (which I wasn’t). Its was their perception and not based on reality. I am the same person although they treat me differently now I’m in a wheelchair.

So my message to people would be don’t judge people on what they can or can’t do…

simply accept them for who they are…

Because

one day it might be you

But I hope not…

((((Hugs))) Mary

Hello Zak,

Best of luck with your presentation - I hope that this is good for you or the collegues that see this. I developed MS when I was 17, while studying for my A levels. This was 26 years ago (phew, this has just occurred to me!) and I have really been very bad after some relapses, but since I went on a dmd, this seemed to reduce these exacertations to one every two or three years, and very luckily (that I know of) I have had no side effects. But a couple of years ago things started dropping down again, though my neurologist assures me that I still ‘only’ have RR MS. MS has changed my life hugely, and though I know that all relapses are BAD news, I refuse to get too stressed about what might or might not happen. I now fill my life with things that make me happy, such as gardening and reading and sitting with rabbits. I also have a very definite suspicion that there are some very useful medications on the horizon.

Best wishes,

Moira

I have times when I don’t think it affects me at all. In fact if anything it makes me do more than the average as I feel I have more to prove (don’t want people thinking my MS is an excuse). Unfortunately at the minute I’m having a time when its really impacted on my life, not so much mobility, but balance (flat out in the mud on a walk with the kids because it was raining and things were muddy), and fatigue (the fatigue is beyond understanding of any normal person, even a trip around the supermarket is too much and it makes me so cross), my fingers won’t work properly so anything I write down is barely legible and I struggle to play the piano now which I loved. Also my big children go to cubs and I cry everytime they get a badge as its such a struggle to sew them on. My little one is still in nappies and sometimes dealing with my own toileting needs is enough (getting the button undone on my jeans, and feeling to wipe), so often end up covered in poo! Added into that all the intermittant sensory problems and I sometimes think life will never be the same.

I don’t want to commit to something thats supposed to happen next week, let alone next month as I don’t know how I’m going to feel. I’ve got brittle bones as a result of lots of steroids so broke my shoulder in a fall which makes me more fearful about falling. I’ve had MS diagnosed for 11 years, but fear I had it even at Uni, periods of extreme exhaustion, loss of balance (falling off my bike and blaming it on cars getting too close etc). But in that time as well as having a career (although think I am going to have to rethink that now, its difficult to nurse when you can’t feel your fingers), had a family and posed nude for a charity calendar! You can’t let it rule your life, I never say I’m having a relapse, my MS is misbehaving. And I’m hopeful that Tysabri will make it behave so that I can start planning and living again instead of surviving from day to daty.

Hi Zak,

MS has changed my life dramatically - because of MS, I can no longer walk my dog, go out dancing or drinking, work full time, run, walk without a stick, wear pretty shoes, etc etc etc. But I think I’m a stronger person, I put up with less BS than I used to, I know I can cope with anything, and I’ve met a few friends that I would not otherwise have done.

I would definitely advocate not putting things off - there are so many things I wanted to do that are now not possible, but I try not to dwell on the fact that I will never have children, drive a motorbike, own a totally non-practical car just cos it’s pretty, dwelling on these things is not healthy and will make me even more ill.

Hope this helps,

Luisa x

I don’t worry about having a relapse as what will be will be. I’ve gone through a lot in my life and come through it all, so this MS is not about to beat me. Ok I walk with a stick, my handwriting is awful, I lose balance easily, I fall over, the fatigue is horrid. Mentaly I’m no different except I can’t always remember things quickly or take things in as quick as I used to. But with all that’s happening to me I am still me with a little extra added. I could do without it but it won’t stop me doing what I want to do unless physically I can’t. I’ve found out the secret and that’s not to worry about what MIGHT happen!

Janet x

Hi Zak,

I try not to worry about what the next relapse will be, but sometimes that anxiety just creeps in. I find it difficult to plan in advance and sometimes just wish that the future wasn’t so unpredictable. I am a control freak though, so this probably doesn’t help! For the most part I just try and get on with life. Everyone I know with MS is older than me so my usual circle of friends are all fit and healthy. I just tend to do as I can and rest up in between.

Boo