Forum

How do you cope?

I suffer from MS and I need a strategy to cope. My first relapse was in 1979, diagnosed in 1995 but the MS did not begin to affect me until 1999. The disease has progressed slowly, I recently had to stop work as a computer consultant. Nowadays I occupy my time developing the website aid4disabled

I have SPMS and at times I really struggle. I was an active bloke, go off to work every day, walk the dogs, cook the meals, do the gardening and drive the children to their various activities – genarally speaking a doer if you know what I mean.

Now it takes me 5 minutes to walk 200 metres on a flat surface, cannot garden, cannot drive, cannot make love to my wife, cannot get the gratification of doing anything that expends physical energy.

Consequently I get so very frustrated. Most of the time I can carry on with life but every once in a while the anger and frustration boils over, the red mist descends. I write angry emails, say stupid things and this is ruining the relationship with my wife. She is the one who suffers and consequently so does our relationship.

Its not going to kill me but slowly it is stopping me doing things that I took for granted. I know I’m not the only one in this position.

Do you get cross because you are so totally frustrated? How do you cope when the anger and frustration is boiling over?

Thanks,

Patrick

I feel guilty responding to this. I’ve only had ms for a year. But and already struggling not physically but mentally over thinking every thing ms is just a giant mind fuck feeling the need to re live my youth even more stupid when I factor in my real age. 20s all I know is I can only go forward I would not say I’m depressed I defiantly have anxiety issues and paranoia. I haven’t told my nurse yet but I have a vague idea about how antidepressants work. Ironically I’m going to tell you to think. you know what you have and your family are suffering too take a little time out before you respond and think how you’d feel

Hi Patrick,

I’ve only been diagnosed just over a year, but did have MS before that I’m sure, as most of us report. Also my Mum had PPMS, so I grew up with it.

I totally understand the fustration, the loss of the life you had, the loss of your identity. I watched my Mum face all that and I, as a mother myself am now scared, angry and upset for history potentially repeating itself with me: Mum with MS and child growing up amidst it and the restrictions etc… it brings. You do take out these feelings on those closest to you, that’s just what we do.

My MS nurse is sending me later this month on an NHS programme called “looking to the future” for folk with MS to help them move forward emotionally with their condition and manage it, you could ask your MS nurse if he/she runs such a thing? I don’t know what it will be like or if it will be useful to me, but def worth a try I think.

Jools

Hello Jools,

‘Looking to the future’ - please tell me what the course does for you, what it does for you and how it has helped. Coping with a progressive disability is not easy, the target is never stationery .

If you want write to me at patrivck.burke@aid4disabled.com.and look at my website www.aid4disabled.com

I look forward to hearing from you

Regards,

Patrick

Hi Patrick, I also understand what you are saying. I get very frustrated, angry with myself and swear a lot.

I`ve been having severe mobility problems for 14 years.

I`ve been a full time wheelie for 8 years. I am hoisted at home and it is a godsend, but without it, I would struggle, get injured and hubby would be in his shed even more!!!

This is how are lives are and there is no way we can go back to our former life.

So what can we do? we have to accept how we are, that we need help and although it annoys us to continually ask for help, it is what it is, I`m afraid.

we should count our blessings and see the better side of life. There must be one.

Think to yourself how many blessings you have. Treasure them, before the rot really sets in and life becomes unbrearable.

My blessings are these;

a hubby of 40 years who still loves me, even tho` we have no sex life

2 daughters, who need our support as they are both newly divorced

4 grandchildren who never knew me any other way, so think their grandma is extra special, as she gives them rides on her wheelie.

2 sisters who love me and want to help me.

friends, like those on here, who are considerate of my limitations

My health condition aint great, but it is better than my sis-in-laws, as she is dying with cancer.

What are your blessings?

luv Pollx

GOOD POST - My own experiece of MS goes back to 1999 as well!! (On another note, it may be beneficial to see your GP about anti-depressives - I’m on them and they DO make a difference) - I used to be active playing rugby and hockey, martial arts to black belt, swimming, cycling and plenty of other ‘active sports’ - my wife suffers also! - she’s from Northern Ireland and went through ‘the troubles’ and she studied at university in england to degree level and now has a ‘Professional job’ as an Optician. - YES, I do get cross when I suffer from FRUSTRATION! - I don’t know what I F*CKIN DO!! I tend to swear quite alot but I have to watch because I have a nine year old ‘daughter’ - I don’t know what I do and at 56, I don’t have a clue what to do! I’m like you! but to make matters worse - not only is my wife from Northern Ireland (and qualified!) but she’s an ardent catholic as well - (I was ‘brought up’ in the Church of Scotland but I don’t follow that now) - I’ll try and watch for any advice that you might get but maybe you could ‘adopt’ the attitude that I sometimes follow - be SELFISH AND RELAX - it doesn’t always work but in the absense of anything else, it gives you something to blame! The wife is getting tired of it! BUT I don’t honestly care!!

Marcus.

how do i cope? the truthful answer is-as best as i can.

that involves asking for help and not being so stubborn. it involves thinking re kids and how they WANT to help so dont dismiss their offers. one way is laughing alot! that has been put the test recently-i have found myself in a horrendous situation but definately made easier by laughing. reducing the guilt stuff helps greatly. the best way is by communication-i dunno any mindreaders!

ellie x

I too am SP and heading downhill rather quickly.

I try to cope by not looking back or forward.

I don’t look forward because quite frankly I don’t want to know. I don’t look back because the comparison between the pre MS me (or early years MS me) is just too startling. I try to just look at now. Deal with the difficulties I have today and try to find ways of coping with them.

My biggest problem is boredom. After a lifetime of goal-orientated activity (education/work/family) I find it quite hard to do things just for the pleasure of it but I’m working on that. It’s no good mourning the things I used to be able do – I have to find other things, things that will give me a little pleasure and pass a little time.

Great post

Jane

Hello,

I would like to thank you all for your replies. In case you are interested I have written an article that covers some of what everyone said in their own way. The link is http://www.aid4disabled.com/the-word-disabled/

I run the website www.aid4disabled.com, if you get a chance do take a look. I will try to do onew based on what you have all written… Its gone onto my ever expanding ‘jobs-to-do’ list.

Thank you all for replying, one

wards and upwards.

Many thanks,

Patrick

hi patrick

i cope by using this site and following links like yours. there’s always something that i will keep for later because all the symptoms appear to come around. so although i might not need this aid, you never know.

it’s useful to prepare yourself for the next round of sh*t it throws at you. and good to know where to go for help.

i like your site

thanks

carole x

Carole…I think thats a great philosophy.

Is it almost like planning for a war so that when the battle begins you’ve got everything ready to hand?

Does that make sense? I hope so because this is the second post of yours today that has absolutely tied in to what I think, and it would be nice for me to be starting to make sense of this illness. That sounds selfish but I guess that’s the point of forums…that we share and learn from one another??

My goodness it feels like an epiphany…

Gillian

[quote=Gillian44]

Carole…I think thats a great philosophy.

Is it almost like planning for a war so that when the battle begins you’ve got everything ready to hand?

Does that make sense? I hope so because this is the second post of yours today that has absolutely tied in to what I think, and it would be nice for me to be starting to make sense of this illness. That sounds selfish but I guess that’s the point of forums…that we share and learn from one another??

My goodness it feels like an epiphany…

Gillian

gill, i read about LDN before i was dx and therefore chose copaxone because it wasnt contra-indicated.

looks like i’m a bit anal about researching the next possible disaster, but hey!

i’m also very determined to have treats to look forward to. i bought a ticket to festival number 6 in portmerion next weekend. i got a free ticket for a carer but nobody is able to come with me (what a waste)

it looks great - google it

take care

carole x