I have advanced secondary progressive MS and my partner of 16 years left To go back home and abroad and be with her family, for support and to be with her aging mother. Also left to get away.The months she left I was having a terrible time in which I’ve mostly recovered from-however, with her gone highlights just have disabled I am as I’m now relying on full-time carers. I lost my long-term partner, my independence, I have absolutely no future or prospects (wheelchair user, bowel bladder you name it). I find it patronizing when people talk about finding a hobby. I’ve always worked for myself and work towards goals. I’m a writer, albeit a near hit and mostly miss.
Our / my home Living with ghosts. The worst part was how shut down she became because she knew she was making such a difficult choice choosing between me(shefelt guilty anyway) and her mum. We had very little help at the beginning and it basically caused her to have accidents trying to hoist me, And quite possibly a breakdown…
My family aren’t supportive in emotional terms as they never liked her.Everyone sees me as this happy, smart, she’ll be OK so on so on so on-the carers love me because I think I’m funny. Truthfully I’m crushed. I’m tired of Ms -18 years. Everyone talks about supporting carers-fair enough-but nobody’s talking about the support of the ones left behind. I’m in my late 40s and can see a nursing home is possibly on the cards in the near future.
Always believed in the right to choose when and how we die and I’m a Digna task not that I can afford it… Every day I think about (in a very rational, fleeting way) How to just end it. I wouldn’t want to hurt my family, I wouldn’t want to make a mistake on how you do it and as I’ve only got the use of one arm/ hand- Choices are limited.
Future now is being put to bed at 8 PM by cares and the only way out of this life is in a box quite frankly.
Fingerpainting at the local MS Center is not gonna help.
This is voice dictated-another joy of Ms.
Never really been depressed or down- Everything just seems utterly pointless especially if it’s just getting worse.
Just wanted to sound on how I’m feeling.
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I am so sorry that things are this bad for you.I hope coming on here and talking about it somehow helps you a little.
((((((hugs))))) x
Chin up dude. These are tough times for you, but you will pull through.
I can understand about the finger painting, the MS group I go is quite similar. I play with electronic music gear, like synthesisers & drum machines. I’ve even got back into graffiti.
Having something to do, usually takes our minds off dark thoughts & there is some good in this world.
I’ve agreed to dog sit for a week, whilst a friend goes on holiday.
If you want to drop me a line, you are very welcome.
Best regards Terry.
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Hi, it is definitely the pits, living with MS. I have Spinal PPMS…22 years now. Been a full time wheelchair user and hoisted for many years.
Bladder and bowels do what they like…had SPC for 8 years.
I rely on carers plus hubby of 48 years!
Routine is boring… but I still value my life.
I love sewing and coming here. Go to bed at 4.30pm everyday. Watch Netflix and Youtube.
I can see nursing home for me if hubby pops before I do. We are 71 and 67.
What can I tell you?
Boudsx
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Ok. Here I go. I usually do. It’s the years of social working gone past now. So you are not yet 50 and the last place you want to end up is in res/nursing care! Obviously I do not know the housing situation but my mind is kind of going towards moving to a supported type development - where there are small disabled friendly bungalows and a staff team who provide 24/7 care. This would include assistance with accessing the local amenities etc It would also give you a peer group day to day and your other friends and family could visit etc pm if you want to chat x
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This is a good place to air your frustrations. I have carers in the morning and will be having evening calls from Monday. They’re a bit early but with a hoist and hospital bed, I’ve created an active hub with media/TV, drinks with a mini-fridge and snacks. It helps but I now have to re-think my day. My wife left 4 years ago so this mountain is being scaled solo. Keep writing, I’ve completed 6 children’s novels so far; no success yet.
Best wishes, Steve.
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Your post really got to me and I wanted to reply though I have no suggestions as to how to change things for you. You make me think of my dad who had MND and could do very little for himself. All I can say is that I think you’re very lonely and in a really dark place at the moment and like the others will be here if you need someone to talk to. Take care Cath
Hey Mr Writer!
You remind me of my wife. She can has the use of her right are too. She likes the idea of death with dignity. I hate it but I have come to accept it and all of her other ideas. Her new idea is to leave me because she sees how hard it is for us both. What? I have come to accept that too.
You are an incredibly strong person and life can be crap and it can be crap every day for brave warriors like you and my wife.
If ever you want to dump a load. I will listen.
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Sorry Anon , I’ve only just read this, all I can say is my heart goes out to you, I think everyone who has already commented has give you such good advice. My faith helps me and also I have a wonderful assistance dog called Frazer he always makes me feel better when I’m having dark days. All I feel I can do is send you hugs I hope that helps in someone knowing that people care about you. Michelle and Frazer xx