What lessons have you learnt since DX

Everyday living
21

Hi, well I`ve really enjoyed reading all the replies as to how living with a monster affects everyone in different ways.

I dont have MS anymore (yeh, odd thing to say, eh?) but I do have something similar which has robbed me of so may things…I wont bore you with the details, as they are much the same for most of us.

So what have I learned about having an incurable condition.

I have more tolerance of people using disabled loos, parking bays. They may not look disabled, as you cant see every disability. But that doesnt mean i dont get cross when folk come out of my loo with armfuls of clothes they been trying on instead of using the fitting rooms, or if they look at me cheekily and say Id give it 5 mins, if i was you love`. and then they run out of the shop not having bought a thing!

Ive learned very recently that I cant rely on our daughters helping out, if we are in crisis mode. They`d prefer to put me in a home…really, thet did say that! All we needed was a few days assistance.

Ive learned that however hard I try, my monster` does have charge over me, not the other way round.

One thing that does cheer me up is when i answer someone here who has a problem and they tell me how much my words have helped.

Maybe I have been luckier than some, as Ive had great help from Social services, OTs, physios, District nurses and my GP. neuros? well, thats a different story!

I think we are never to old to learn something new. But i also think we are never done being surprised at the cruelty of some folk when it comes to the bare faced cheek and rudeness of how we are treated at times.

I will be forever grateful for finding this site and the wonderful friends i have made and am still yet to make.

love you all,

Pollyxxx

22

When I was first diagnosed I was very scared as I was still in the grip of my worst relapse to date and was struggling to get my legs working properly again. It took many months before I could walk any distance without collapsing during or afterwards and I thought I would never be the same again. What I have learnt if that my life has changed but it’s not quite as bad as I thought it would be. I still work 30 hours a week and I walk slowly but I don’t need a stick (well I probably do sometimes but I am still resisting!). The fatigue is the worst but I have learnt to stop caring what people think and when I need to rest, I do so - if that makes me lazy to the outside world, it’s their problem. I even sit down wherever I am - even in the middle of a crowded shopping shop, on the floor, or in an airport - oddly enough, I must look as bad as I feel because most people look quite understanding and some even offer to help me up when I’m ready to move on! (or perhaps I just look drunk, or much older than I am!).

Four years ago, when my neurologist first told me what he suspected I never thought I would be this well at this point, so for you newbies, or those of you in limbo, it’s not all doom and gloom. Much of what the others have said is true of course, I have had a tough time at work with some ignorant people but equally several people at work have been very supportive. I have found out who my true friends are, they are the ones who don’t offer hollow sympathy but practical help when it is needed or just an ear to listen when you are having a bad day or a giggle to pick you up at the right moment.

I’m still learning, and I take it one day at a time.

Tracey x

23

I have learnt that I have still got a lot to learn about MS. I have learnt that you need to accept your lot in life and live day-to-day otherwise you may not get up! This is my life, it is up to me how I live it. I have learnt to keep going every day. Teresa xx

24

To ask for help for the first time in my life. I have been very lucky in particular that my ms nurse and OT in particular have been fab through a lot of hell last year, in addition to family of course That those friends who have stuck by me through this are true friends, not neccessarily those whom I expected! That a supportive family and partner are so important To accept it and get on with it. I am more determined now than ever and will not let it beat me or let it stop me doing anything

25

Oh and I always plan something that I can look forward to or reward myself with when I have looked after myself well or coped with a rubbish situation /relapse etc. whether its a trip away, a massage, a chocolate bar, time with the man…

26
  1. I have MS 24 hours a day 7 days w week, every day of the year, not just the 30 mins or so that a doctor or consultant see me for, so I need to do as much as I can to help myself. 2, Medical treatment tends to be a best guess “let’s see how this works”. 3. People don’t want to know you anymore. They’d rather talk about you than TO you. 4. Medical bods tend to have rose-coloured spectacles on when it comes to care. They assume your loved-ones want to do as much as they can for you, when really they only want to be a career when they’re not doing anything else, eg. When there’s no football on TV. 5. Being so dependant on others makes you feel useless and redundant. 6. Some medical bods are just plain rude and arrogant, whereas others are brilliant I’m sure I’ll think of more as the day goes on. Heather
27

i now realise the only expert on my condition is me. Sounds arrogant but i live with it and I have become my own expert on my condition, I have done a lot of research into how it affects me , so will not listen to so called ‘expects’ who have got their information from a newspaper. I have in the past and also quite recently discussed this with the medical professionals and in each case they have said you are the expert and you know what affects you. On a lighter note I no longer have to place myself in situations that are uncomfortable, well at least it has one good point

28

Hiya

I’ve learned to take each day as it comes and that life is much easier if you don’t ‘sweat the small stuff’. I think I was a bit like that anyway but it’s just made me even more laid back than I was before.

All in you don’t have to be gadding (if that’s even a word) about all over the place to enjoy life. You can sit back and watch, you’d be amazed at the great things the world and it’s people have to offer if you just relax and watch for a while.

Sue

x

29

P.S.

I’ve also leaned that my veins don’t like to have things stuck in them!

x

30

I have learned who my friends are (like many others) and that I don’t actually have many!

I have learned that I was naive to believe there would be treatment and support, and that the only help I get is that which I pay for.

I’ve learned that when people ask how you are they don’t actually want to know.

I’ve learned how obstructive people can be, and on the plus side how helpful and considerate others can be.

I have realised that without my husband my life would not be worth living.

And last year I learned that even with ms and very limited mobility it is possible to lose weight, and even to have a two week holiday and not put any of it back on!

Happy New Year to you all!

31

I’ve learned that with RRMS, things are not always going to be bad.

I started off badly, got better, got worse again and then got better. For example - 4 months after diagnosis, I could hardly walk more than a metre, was doubly incontinent and couldn’t read a book as I forgot what was happening by the bottom of the page. I couldn’t remember my address or how to get there by car. I had little awareness of just how ill I was. All I knew was trying to get from bed to the bathroom or to a sofa.

Things got better. 6 months after diagnosis, I was back to normal and euphoric. I was so, so happy.

In 2005, things were bad again. Could hardly walk, had a terrible tremor, couldn’t remember anything and my bladder seemed to have lost all feeling. Then after 9 months I recovered. (long story and involves weird diets).

To my utter astonishment, so far, (touch wood etc, etc) I haven’t progressed. I do worry that I may progress, so I’m not making any claims for anything.

After 5 years of doing nothing at home (housebound) I started to do T’ai Chi exercises (at home) then gentle muscle toning exercises and my legs became stronger. I started to learn a foreign language (failed miserably for 4 years) and then moved to Galicia. It took a year of being terrified to talk to people, but my female neighbours (all in their 40s and 50s) dragged me into their lives and I am forever grateful for this. I love them so much.

Now, I play the violin each day. I visit my friends each day, we have very little money, big holes in the roof with big buckets under them. We have no central heating, just a log burner and I’m really hoping that this year, I can go back to teaching people how to sing. It’s one of my goals for this year - the other to get back on my bike and the last, to get into an Irish music group or the local orchestra.

Life isn’t necessarily over after diagnosis. With RRMS, there are good times and scary times and rough days. I’ve come a long way since my neuro told me it was MS. I never dreamed that I’d end up sitting in front of an ancient Mac Mini in an old cow byre in the middle of a very odd and remote part of Spain.

The price has been big - I haven’t seen our kids or my parents for 2 years, but we’re coming back to the UK for 5 days for our daughter’s graduation ceremony at the end of this month and I’m really, really excited and a bit scared. I get tired in the UK. There’s so many people and cars and my eyes and brain can’t process too much information at once.

Don’t be frightened to learn things. It may take longer than for a well person, but you’ll get there in the end. It’s good for the brain.

Don’t go where you can’t. My legs won’t bend, so I can’t go hill walking. I can’t tell where my right foot is, so I always get someone else to carry big things like sheets and duvet covers. If I can’t see my foot, I’m in trouble.

Also, thanks to medicine. I don’t know how I’d be if I hadn’t been lucky and started beta-interferon as soon as possible. It could all have been so much worse. Now I know how lucky I’ve been. You never know - you could be lucky too.

32

I’ve learnt that I love my bed :slight_smile:

33

Lessons in a bit of Greek, a bit of electrickery and how to tune a piano.

M

34

I’ve learnt that life with MS can be tough. But I’ve also learnt that life can be (and almost certainly be) tough for everyone at some point.

I’ve learnt a lot more about myself - what my personality is like, things like that.

I’ve lost some of the beliefs of my younger, evangelical Christian self, But I have gained the benefits from contemplative spirituality - things like learning from wiser people who can see the good things in mystery, or discoverng how much the practise of mindfulness can help with things like pain or anxiety.

I’ve learnt to find the beauty in small things - the way the light reflects in something, or enjoying looking at the clouds while having a nice cup of tea.

I’ve found my taste in films has changed, from plot-driven films to ones that are more about character.

I’ve learnt about my body - I’ve got to know it better, to read the signs more, like being more aware when I think my bowels are going to go.

I’ve learnt what kinds of things energise me, and what leave me feeling drained.

Erm… that’ll probably do for now

Dan

35

iv lernt. havnt got it wont get it. And also that a leg that has been twitching non stop for 4hours can be realy painful. Not that im failing to sleep because of it or any thing lol that not all people on benafits are frauds or scroungers that i dont always land on my feet. Getting jobs is not as easy as i once thought that some people are realy selfish that the government truthfuly dosent give a s#it about its people. That the job center neads the fist letter switching for a k and a n that the Department of W#nkers and Pr!cks are worse than i ever thought and that despit having cared for 2 people with ms in the past i didnt have a clue wich is what led me to my first point havnt got it wont get it. That calling NICE nice is the true defanition of ironic and finaly that people who i thought were freinds realy wernt i could keep going but my fingers are board of typing and starting to hurt ok one more then MS is an absolute sh!t to live with james

36

Do what you can, while you still can - it might not be possible next year.

Geoff