Hi, We popped out this morning to watch our youngest son play football. I went on my scooter. When we got back, I drove my scooter into the hall and my husband helped me up and helped take my coat off. At the same time, my eldest started complaining that I was in the way as he wanted to get past and go into the kitchen. He also started moaning about why he isn’t allowed to know my Apple password so he can download Apps whenever he wants. I completely lost my rag and started shouting about how I knew I was f*****g useless, but that I’d be dead soon and how everyone would be better off and happier then. I even started banking my head against the wall and said maybe I ought to speed things along by falling over and dying. Everyone has now gone and sat upstairs and left me downstairs in the lounge on my own. There are times when I feel I’m just expected to wear a false smile all the time, not complain about anything and let everyone have their own way, because as everyone knows, disabled people should just be grateful when anyone pays them any attention at all. We should just sit quietly out of the way and not be a bother to anyone, so that everyone else can just get on with their lives with the least interruptions. I know that my MS is progressing very rapidly and that soon I won’t be able to do anything for myself. I’ll need carers most of the time for even the simplest things. It’s upsetting for me to see what I’m becoming. People can obviously see that I’m ill yet expect everything to carry on as though nothing’s wrong. I’m sure I’m not alone feeling like this. Thanks for listening. Heather
Apologies for spelling mistakes. My iPad needs cleaning and doesn’t register all keystrokes.
oh heather i sympathise
families seem to be the ones we get stressed over.
give them enough time and headspace to sort out how they are feeling.
i’m sure they love you very much.
meanwhile watch some girlie telly with your feet up.
(((((((some hugs to see you through))))))
heather, i sympathise
families seem to be the ones that cause us the most stress
i’m sure they love you very much
let them have their time out and hopefully they can realise what happened and why
(((((((((hugs to see you through))))))))
Hugs too from me
It sometimes seems to me that families and friends are allowed to get to frustrated with our illness but they seem to forget that we get very frustrated as well but we don’t have the luxury of walking away from it for a break. Even though my MS is very mild I still get annoyed that I cannot do things I know I should be able to.
It sounds like you all need a bit of a cooling off period - apologies from everyone to everyone and a few hugs. Maybe you need to explain to your son that you are just as frustrated with your disease as he is.
Good luck hun and take care of yourself xx
Oh dear! What a to do eh?
I think you all need a little time and space away from each other. Go lie down in a darkened room and rest.
I think saying everyone will be glad when you`re gone, will have upset them and you too.
Tomorrow will be better…the kids go back to school!
i sometimes feel that I have to endlessly apologise for causing extra work and trouble. Least said soonest mended, eh?
It`s frustratingly horrid when the little things which we did without thinking (taking a coat off as an eg) are like climbing a mountain.
Rest well hun.
Sending hugs have 2 teenage boys myself, and I think they both find it hard but are also teenagers and can be selfish.yoi need some hope and I wish I can bottle it and send to you. Xx
Feeling better now. Youngest has gone out to play, eldest on Xbox. Husband listening to Derbyshire. Had a green smoothie.
Oh Heather. I am glad it all sounds a lot better now.
How old are your boys? I am sure they adore you.
My 2 lads were 17 and 18 when I was diagnosed. They are now 26 and 27 and are the most considerate, kind, individuals in the world. They are grown men now and are a huge help to me. They both have their own places and ring me at least 2 times per day. I’m not saying that we didn’t have days like you have had today because we did. I remember feeling like you did on many occasions when they were younger.
See. That will be you in the future. And they are absolutely brilliant when you need a good strong hug to make you feel better.
They have lived through the ups and downs of MS and I am sure that they have grown to be as kind as they are because of it.
Take care and enjoy the peace.
See, all calm again…and just 2 hours later!
Get those meditation cds out, yeh?
ps these rotten illnesses are enough to try the patience of a saint!
A green smoothie, interesting - my niece tells me that pink is the best flavour - especially for ice-cream!!
I’m glad everything seems to have settled. I bet tomorrow when school starts, your boys won’t want to leave you hehe.
Enjoy the soothing calm (as opposite to tense silence)
Sorry you are having a bad day. Life is very good sometimes at just lining up a perfect amount of bad stuff to trigger a Bad Moment. I hate it when this happens with not enough warning to take evasive action (i.e. usually). I hope you have reached calmer waters now. Alison
Ouch! I hate days like that
I have 2 younger brothers (both adopted and both with different learning difficulties) and they can be so lovely but there have been the days that I’ve visited my Mum and not even had a cup of tea as my brothers were so annoyong - and that’s before MS Teenage boys can test anyone’s patience methinks
The oldest of my brother is usually the most difficult one but he has been so sweet since my diagnosis, he handles me like bone-china when he gives me a cuddle and I know how hard that is for him as his hand-eye co-otdination has always been shocking! I am totally disarmed by his behaviour towards me at the moment (so I hope you know how much yours love you even if they are being really annoying) and my younger brother has Aspergers, I don’t think I’ve spent so much time with him in the last 3 years altogether as I have in the last 3 months - he’s always watching TV or on the computer normally - now he has long conversations on every visit (usually about TV/film/youtube!) but conversation all the same.
It’s kind of funny really, they both have problems but in some ways are the two out of all my family (which is sizeable) that seem to know best how to treat me now and have really made me feel loved in the lasy few months even tho we never talk about MS itself, my Mum’s obviously told them a bit but they don’t ask, they’re just cool with me. Eveyone else needs it explaining
Sorry to waffle, I hope you get what I mean and what I’m getting at
Hi Heather, not that my MS is as progressed as your’s I still can sympathise with you. I think also it’s not because your Heather, or have a disabililty and MS as to why you feel the way you do having to be happy and positive all the time! I think it is because you are MUM! and mum’s are always there and fix everything. When mum is not able to do it all the family unit has to learn to restructure, which can be very confronting to husbands and children! I too in my house are the person that fixes everything and is there to do it all! but since my diagnosis my husband has had to step up to the plate not only in household duties and childcare but emotionally and mentally for the family! and I can see him getting very exhausted at times and frustrated. As life was easier when he could walk in the door after a hard day and be tired and grumpy and I would be there to listen and fix all the days problems with a good home cooked meal! lol! I think it is also good sometimes if mum does loose her poo! then it also makes the rest of the family remember that mums aren’t invincible and they too need a reassuring hug and can have a crap day also! Glad everyone is back in their usual roles and you have your feet up and are resting! good luck! Shann_36 x