I have MS and am now quite dibilitated,what keeps ypou going all day to deal with bordom.
I used to work in an office, I miss that company around me, although my body doesn't work my brain is still active
What do you do all day?

Hi Jenny. I don't have ms but my mum did. If you want to chat anytime just pm me as I grew up with it as a major part in my life.

I have 3 young children and thats one of my worries. I know If I die they will be cared for but its how they see me and not being able to be fully part of their young lives too.
It makes me very sad

I have 2 friends with MS, one lives fairly locally and has 2 young children, she has just finished an OU degree and has good and bad days, somedays she needs a wheelchair or a stick, others she can make it down the stairs on her bum and into the car to get the kids to school.

My other friend who had it died several years ago now. She was crushed by an ambulance reversing into her where she worked (she was a paramedic), she owned stables and was a brilliant rider. She was diagnosed with MS following the accident and within 18 months she was a vegetable, she lost her sight, speech and bodily functions, she laid all day in a care home bed and then for her final 3 months in a hospice. She could do nothing for herself but she always had a smile:)

I have MS and am now quite dibilitated,what keeps ypou going all day to deal with bordom.
I used to work in an office, I miss that company around me, although my body doesn't work my brain is still active
What do you do all day?

Hi Jenny

My mum had MS, but luckily she had long remissions between bad patches. She lived to 73 years old, and was in a wheelchair 4 times in her life, but each time she got herself back on her feet again.

I have ME so I am also quite often debilitated and I spend a lot of time in the house. I spend most of my time on the computer, often on here :) I write on a lot of different forums.

I also have set myself up in a small scale antiques business, where I buy items from ebay or when I can get out, from auctions and car boot sales. I sell them in a unit in an antique centre where they are sold on my behalf and I only have to go once per month to stock the unit up. It doesn't make a great deal of profit, but it keeps me sane.

I do understand what you mean about not being actively available to your children, I feel that too. I home educate my daughter, and she has had a different experience of her mother to that of her brother who is 10 years older and knew me when I was more able. However all anyone can do is their best, and I try to do that. I might not be able to run and play with my daughter, but I am always available for cuddles and for her to talk to with her problems. Sometimes she has to help around the house or with preparing food because I am not well enough etc, but she is proud to be capable and helpful, and it is not very often so we muddle through.

If it is possible you will not be with your children for all their young lives then that must be very hard to consider. I think in that situation I might try and build as many happy memories for them as I possibly could. Someone very wise said to me to try and find one thing in each day that gives you joy. I try and do that where I can. For me it is often a walk through the woods, but it might be something so simple as cuddling with a child on the settee while they watch their favourite program - that is the sort of thing they remember for ever.

Maybe you could spend some of your long day time hours planning clues for them to do a treasure hunt, or preparing them a memory box full of little items which will strike a memory when looked at in future years. Scrapbooks of the things you enjoy doing with them, photos, entry tickets and postcards from places you have visited together etc. ? Perhaps you could plan an indoor picnic if you are not able to get out, it is quite fun to spread the rug on the floor and have sandwiches under the table sometimes :) When we have little energy it does take planning to make the most of the little we have, so if you can manage that then try and plan something good into every day, or at least once per week have a treat or an outing together with your children - planning it will give you something to think about during the day, and it will make your time with your children more precious.

I have 2 friends with MS, one lives fairly locally and has 2 young children, she has just finished an OU degree and has good and bad days, somedays she needs a wheelchair or a stick, others she can make it down the stairs on her bum and into the car to get the kids to school.

My other friend who had it died several years ago now. She was crushed by an ambulance reversing into her where she worked (she was a paramedic), she owned stables and was a brilliant rider. She was diagnosed with MS following the accident and within 18 months she was a vegetable, she lost her sight, speech and bodily functions, she laid all day in a care home bed and then for her final 3 months in a hospice. She could do nothing for herself but she always had a smile:)

I am sure you are getting great support from the hospice, but are you aware they should also be able to support your family too (if they aren't already). The one I worked at provided a therapist for the children to talk to and to help build memory boxes and find ways of expressing how they felt.

My mum has MS. I hate to see her try to be what she used to be (head of neuroscience at Birmingham University). To sit and watch my Mum fade away is the worst feeling in the World.

I don't want to see my Mum suffer. She doesn't deserve that. If nothing else I hope her demise is quick. As hard as it is for me to say she deserves to go with a bang, not a whimper.

I love my mum, I just don't want to see her suffer anymore.

It's not fair.

:confused::confused::confused:

At the risk of being selfish, why my Mum ?

She has spent her time looking after people, she should get the chance to spend her retirement doing whatever she wants. She shouldn't have to spend it being concerned about others. She is more concerned by them than she is herself.

It just isn't fair.

:(:(


Apologies for lack of funny, but no-one deserves MS.

Ooops. Double post.

My mother also has MS -- it's a slow-progressing type, known generally as recurring and remitting. That means she has bad days/weeks when she can barely sit up and must use a wheelchair and good times when she can walk some using a zimmer frame. Getting overheated -- as during the summer months -- really makes her symptoms worse.

She did several stints in physical therapy (for as long as her insurance would pay) and they really helped. But it didn't take long for her skills to relapse without the therapy, even with home exercise.

She can't drive anymore, obviously, so she sticks close to home. But she keeps herself happily occupied with reading; simple cooking; watching football and DVDs; listening to music, talk radio and books on tape; container vegetable gardening; growing houseplants; teasing her cats; bird watching; and playing cards and trivia games.

She's 83 and smart as a whip.

Jenny's children attend young carers groups , they have alot of fun, I have made memory boxes with the children myself especialy after their dad died very suddenly.
Jenny is a fully qualified accountant .... why not set up a small buisness.... people like us would be more than willng to have a great accountant.... and you would be more than welcome to do them for us as i really hate doing them :(
There is more to life than sitting in your own home worrying aout things , Jenny you are clever, funny and fantastic you can do more than you think , just go for it and see hun.
If you don't try to do more you will never know if you can.... I want to see you have victory over this. :)

I
My other friend who had it died several years ago now. She was crushed by an ambulance reversing into her where she worked (she was a paramedic), she owned stables and was a brilliant rider. She was diagnosed with MS following the accident and within 18 months she was a vegetable, she lost her sight, speech and bodily functions, she laid all day in a care home bed and then for her final 3 months in a hospice. She could do nothing for herself but she always had a smile:)

well i bet that cheered her up no end.rather inconsiderate i thought hutchy:(

It wasn't meant as a downer Moet, it was meant to show that even when things were as bad as my friend had it, she still found a smile.

Yes for Jenny things have been grim but she is trying to pick up the pieces and adjust from what was a very full life until early January this year. I guess what it comes down to is learning to live with the limitations she has. This by the way is nothing Jenny and I haven't talked about we have honest and frank conversations all the time, as this helps her put thing into perpective.
The hardest thing is not being able to do the things she once did with her children, like play football, volley ball , swimming , dancing or even driving them out for a picnic. Jenny worries her children have to grow up to fast and have too much resposibility , she wants them to have a childhood not to have to be young adults.
The school has been providing lots of good pastoral care and even a named person with whom they can talk to at any time.
I must admit although your friend always had a smile on her face she did see the fact she had died and hasn't been on here since then . The worry of leaving her youngones even though they will have a great carer it would be awful for them to have lost 2 parents in a few years .

I repeat that this was not meant to distress anybody, I did make a positive contribution about my other friend too

"I have 2 friends with MS, one lives fairly locally and has 2 young children, she has just finished an OU degree and has good and bad days, somedays she needs a wheelchair or a stick, others she can make it down the stairs on her bum and into the car to get the kids to school".

Believe me it would have been very easy for her to give up, but she didn't for her childrens sake. She was limited as to what she could do and knew she would probably never get the chance to work and put her degree into practice but it was something she had always wanted so she went for it regardless. Illness can be cruel but I am a great beleiver in keeping a positive mind not just for yourself but for those around you too. It is great to hear that the children have so much good support through the school too. It sounds lke Jenny has many talents from what you have posted that will be wasted if she lets this beat her. Having worked in a hospice I have seen with my own eyes the benefits of laughter, tears and doing something however small to keep your sense of purpose alive and I hope she can find something to help her through this awful condition.

I repeat that this was not meant to distress anybody, I did make a positive contribution about my other friend too

"I have 2 friends with MS, one lives fairly locally and has 2 young children, she has just finished an OU degree and has good and bad days, somedays she needs a wheelchair or a stick, others she can make it down the stairs on her bum and into the car to get the kids to school".

Believe me it would have been very easy for her to give up, but she didn't for her childrens sake. She was limited as to what she could do and knew she would probably never get the chance to work and put her degree into practice but it was something she had always wanted so she went for it regardless. Illness can be cruel but I am a great beleiver in keeping a positive mind not just for yourself but for those around you too. It is great to hear that the children have so much good support through the school too. It sounds lke Jenny has many talents from what you have posted that will be wasted if she lets this beat her. Having worked in a hospice I have seen with my own eyes the benefits of laughter, tears and doing something however small to keep your sense of purpose alive and I hope she can find something to help her through this awful condition.


I don't intend to waste my time, I think Teenys idea is great as I can work from home, I am a fully qualified boring accountantso should be able to pick up some work .
For me its the children , I was very active with them and now others are having to be me , if you see what I mean but we also have a plan for that too

I don't intend to waste my time, I think Teenys idea is great as I can work from home, I am a fully qualified boring accountantso should be able to pick up some work .
For me its the children , I was very active with them and now others are having to be me , if you see what I mean but we also have a plan for that too

My heart does go out to you Jenny, as I feel this too, I used to be able to spend a lot of time with my son, but my daughter who is 10 years younger has got a different mum who is not able to do as much.

I have a great friend who is far more disabled than I am, and I am in awe of how she manages, everything is planned ahead, she has whiteboards with all activities written down and rest times planned in, and she does so much more than I do with her son by meticulously plotting every bit of available energy to good use. I try to emulate her :)

I do believe in the power of positive thinking, so keep the glass half full, rather than half empty, and concentrate on what you can still do with your children, rather than what you can't do. All children love someone who listens to them, and cuddles, even if you can't run around anymore.

Best of luck, love.

Janet

We have positive power , thats for sure Jenny went swimming today and found she wasn't bad at that even if she is exhausted now!!!:)

We have positive power , thats for sure Jenny went swimming today and found she wasn't bad at that even if she is exhausted now!!!:)

sorry to butt in on this thread....
Teeny - I'm sure you are doing it for all the right reasons - but it doesn't feel quite right for you to be telling us about the experiences of another person who is also contributing to the same thread. It sounds a little bit patronising - and I know its nowt to do with me, but if I were Jenny, I would want to choose what I shared on here, rather than have some one else do it for me.
As I said, I'm sure you're doing it for positive reasons and you're obviously providing good support to Jenny, but I felt uncomfortable reading your posts :)

sorry to butt in on this thread....
Teeny - I'm sure you are doing it for all the right reasons - but it doesn't feel quite right for you to be telling us about the experiences of another person who is also contributing to the same thread. It sounds a little bit patronising - and I know its nowt to do with me, but if I were Jenny, I would want to choose what I shared on here, rather than have some one else do it for me.
As I said, I'm sure you're doing it for positive reasons and you're obviously providing good support to Jenny, but I felt uncomfortable reading your posts :)

I am not unhappy with any of which Teeny has put here and I knew what she had put and was totally happy for this as it was trying to encourage me. Teeny isn't patronising as she knows first hand about what gong on. We are both open people , if i didn't want it written she wouldn't have put it here.

i work as a carer,one of our clients has MS,how she copes with it day in day out i do not know,she gets so upset at the things she cannot now do,i really wish i had known her when she was fit and well,she is quite a character now,so heaven knows what she was like back then,however bad she feels,not a day goes by without us having a laugh about something stupid,a funny story,a daft rhyme she or i have made up,in fact,some of her rhymes have been posted on here,she loves the feedback i give her when i,ve posted one of her creations,all the while ,she pretends that she isn,t thrilled"you,ve NEVER put that on have you??God,they will think i,m a REIGHT nutter", i feel priveliged to have been one of her carers,to have met her,in 2 weeks i will be put on another area,im really going to miss her,i dont have the heart to tell her im being moved, i know she is going to be so upset,her routine is going to be disrupted,and she will have to get used to new carers. if i had a magic wand,or 3 wishes,i would wish that ALL the sufferers of this disease good health.thanks or listening.

I have M.E but I think I have several similar problems. I think at the beginning it is the worst because you can only think what you are missing and are not able to see a future. Give it time. I did O.U courses. I met other students at a study group. I went to the Summer Schools and reinvented myself. I eventually transferred to a fulltime university and met the guy who became my husband. I've had three children who missed out on some things but gained in other ways. Their mother wasn't juggling home life and a job like their friends mothers, was always home when they came back from school. I don't think what they missed did them any harm. They are more tolerant of people's differences than most teenagers. After my disability life changed tremendously, from a nurse fit and able tramping up and down the wards to someone who some days can barely rise from her bed. On my worst days I have loads of audio books which I can listen too. I tried radio but I kept losing concentration so settled for the audio as I can always go back and replay it. I also volunteered as a link person for disables parents and did a bit of counselling that way over the phone. I've been to conferences and campained for disabled parents rights. Sounds like I'm a very energetic person I'm not. I just keep plodding on.

Forgive me for the late reply but only saw this thread today.

I have RR type MS. Was diagnosed 7 years ago. I havent worked since either.
Since fnishing work.. ive lost friends.. dont see anyone at all now.
Some days are good, some are bad.. there are days i feel i dont serve a purpose in life because i cant work.

Other days i think so what not my fault.. i dint ask to have MS. I try to keep things normal and be positive.
However if i do feel like a chat, theres no one there, i s'pose to see an MS support nurse at least every 3/4 mths, not seen anyone in 7 years!

I go to see the neuro, he dont listen to what im saying bout new symtoms at all, he scribbles notes and talks bout clinical trials all the time!

If i had a support network or friends that understood or would listen.. i wouldnt feel so isolated at times.

I will tell Jenny this post is hear, Jenny would love to talk and share with you about her MS,and to hear your story too.

I've struggled with the feelings of isolation associated with MS. I work at a wonderful place in Catcliffe - the MS Therapy Centre - where you can talk to people in a similar position. They can be contacted on 01709 367784

I've struggled with the feelings of isolation associated with MS. I work at a wonderful place in Catcliffe - the MS Therapy Centre - where you can talk to people in a similar position. They can be contacted on 01709 367784

I actually called this centre a while ago. and didnt get a warm welcome im afraid to say.

As a person that has lack confidence for years, i was expecting to hear 'come along , you be ok here etc.

I got , well im sure you will find someone knocking around to help you when you get there.
Im sure you all are nice people and the centre does lots of good for people, but after been isolated, no confidence and on your own for a long time, actually taking the steps to walk in a centre alone and try and be confident is very hard to do as you can imagine.

So a warmer welcome would have been nice for the less confident persaon.

However maybe give them another call, hopefully get a better response eh?
Would be nice to get out and mingle again so to speak and feel like there's a purpose again.

I actually called this centre a while ago. and didnt get a warm welcome im afraid to say.

As a person that has lack confidence for years, i was expecting to hear 'come along , you be ok here etc.

I got , well im sure you will find someone knocking around to help you when you get there.
Im sure you all are nice people and the centre does lots of good for people, but after been isolated, no confidence and on your own for a long time, actually taking the steps to walk in a centre alone and try and be confident is very hard to do as you can imagine.

So a warmer welcome would have been nice for the less confident persaon.

However maybe give them another call, hopefully get a better response eh?
Would be nice to get out and mingle again so to speak and feel like there's a purpose again.


I have spoken with these people but to honest my local church has been more supportive, I did feel isolated until recently. I have begun doing small buisness accounts from home, which I have quite a few clients for.
I have been working for Teeny in sending parcels to Zimbabwe , which although has only been packing baby clothes, has been rewarding knowing at the other end these will be appreciated in the baby home. I have joined some other small groups in the community where my carer takes me. keeping going is the best way and being involved makes me feel less isolated. I do have young children so I also need to keep going for their sake, although somedays its like walking through treacle all the effort is worth it for me anyway.