Long time since I have been on here but feel compelled to share my week of events. My wife who is very supporttive, has been working away in Houston, America as she does occasionally (I stopped working years ago due to my MS) but this trip has brought it home to me how useless I am.
I have a six year old son who is my life and when my wife is away i have lots of support from friends and family and just about cope. I was a student at university until last week when i finished my degree where i also recieved lots of support. I walk with a stick and have a scooter for outside and came to terms with the likelihood of an indoor wheelchair a while ago.
This week though I decided to do something for my boy while he was at school so I bought an airfix model kit to make him a war time aeroplane which he recently learned about at school.
I am in so much fcking pain in my arms from doing something so fing simple that I can barely type this F***ing message.
When did this happen and where will it f***ing end…
Hello Geordie,many of us feel for you and also know how our lives and yours have changed.
Im like you,I have a child at home but the diffrence is I dont have any support.I used to take lots of children for walks,get them playing games,even myself joining in,play football,arts and crafts with the children.Now I am mostly stuck at home and if I do venture out to the park I am resigned to the park bench.I used to be so active.I am no longer me,life I doubt will ever be the same now.
But when I do manage to do something for others and myself I am so proud of myself.I taught a child how to build a kite and how to fly it last week,other children joined in and although I was all fingers and thumbs and shook a lot trying to tie the strings to the kite I did it.
A child realy dont need fancy toys,the latest game for the XBox,all my girl wants is mammy to sit with her and show her love,chat to her how her day went.I encourage her to draw and build things even though I am unable to help her.A child will excell with lots of love and attention.
Even when I am in pain I but my big daft smile on my face and have become a good actress of hiding my pain and heartache.
You got to find diffrent ways of interacting with your child and make it fun.I used to build computers and work on computer forums,now I can barly type and I wish my hand would stop jumping off the mouse.
I do feel for you and how upsetting this is for you and how we spend our days wishing our lives were better,you got to keep fighting and figure out how to do things for yourself and your son.
Sometimes it just gets beyond a joke, and you never know when it is going to happen, or what is going to be the little thing that just makes the whole pot boil over.
It sucks, it really does. I hope tomorrow is a better day.
I admire the way you attempted such an intricate thing to do, I can’t even sew on a button so don’t knock yourself for it being difficult. Those airfix kits are blinkng difficult to do without having ms, I think you deserve a pat on the back for having a go and I’m sure your son appreciated it.
Thats fantastic that you have so such support. I am a single Mum to 4 kids-I tell you this not in ‘competition’ cos thats not what it is all about but I hope that by sharing my experience you may stop beating yourself up. You may of course decide that I am talking rubbish and choose to ignore my well intended suggestion.
I dislike the term ‘fighting MS’ because the very word ‘fight’ inplies a battle that can be won-the battle was lost on diagnosis. I say this because you cant undo whats been done or make it go away. The way I look at it is, MS has now became a part of me-albeit an unwanted part so I aint going to fight with myself! Acceptance, flexibility and coping with new challenges are preferable for me. I choose to spend my precious energy on time with those I love. Recently thats became more difficult cos of speech issues-darn distressing and embarrassing, however, I cant stop it so chose to look at it a different way. Humour. And so far, my friends laugh WITH me and not AT me. The bigger deal I make of it then the more embarrassed they became. I was in the position to stop that circle expanding and risk them deserting me. SInce diagnosis I have lost no friends-indeed I have gained many new ones. I am aware that some are resentful of this (MS) and blame it for turning friends away but I believe that if you complain and are miserable (on a long term basis I mean-we are all allowed a small winge,MS or not cos thats life!) then would you want to spend time with someone who left you feeling drained and low?!
I recently discussed with a good friend the consequences of our decisions and actions. If we decide to do the action-whether that be getting dressed, making an aeorplane or reading a book then we have the choice of complaining bitterly of how painful it has made us or we accept that it was enjoyable and we find a way of coping with the pain/consequences.
On this occassion you chose anger and complaining. Whilst this may be justified (short term), please think of how your son feels re the precious plane you have sorted out for him. There are many games that u can play together with him doing the running about/flying and you being the air traffic controller on ur microphone (wooden spoon supported in a cup!)
I dont have the answers to your final questions-sorry-but tomorrow is a new day and I hope you find your ‘usually positive’ head in the morning. I dont believe for a second that you are useless but I do trust thats how you are feeling tonight because of the pain.
You’ve just completed a university degree, you’re not TOTALLY useless - well, maybe at airfix models, but hey, we can’t all be good at everything, can we?
MS is a sneaky thief - it creeps around swiping little bits of you, and you don’t notice until there’s a lot gone. It is soooooooooooooo frustrating. I got my first wheelchair last week, and I’ve more or less got my head round it, but I used to be a dancer (Highland dancing, very energetic), and now I can’t walk without at least one walking stick, I try not to think too much about what I used to be able to do, and can’t now, I get too upset.
You’ll find ways of doing most of what you want to do, you just need to concentrate on the you that is now, try not to worry too much about the future, and definitely don’t dwell on the past.