having a bad day.

[Monkeyfeet1]

I’ve spent most of today crying. I hate this life, hate that I can only leave the house accompanied and hate that at 52yrars of age I live like this. Sorry.

[Derkie54]

Don't be sorry, we get angry every time we have to adjust to our new normal due to something L can no longer do. There's not much she can do now and we are 24/7 companions so I can understand your frustration.

There's nothing I can do without L being there and there's nothing L can do without me being there.

You will adjust like we do, but I agree it's upsetting and certainly not what we planned for our later years.

Sometimes we feel there is no escape and other times we just get on with it.

I wish I could find more words of encouragement for you but I try and smile when I can and hope the down days for my wife pass quickly.

Take care

Derek

[Gill-C]

I would question how anyone in our position could not have bitter tears to shed. It’s sometimes so painful to look back at who we were and yet, at the same time, frighteningly hard to contemplate what the future holds.

Christmas and New Year, with their expectation of joy and hope, can be an extra pressure. I wish I could offer magic tips to help you in your pain, but all I have to send are words of support and empathy.

[Monkeyfeet1 in reply to Gill-C]

thank you, Gill x

[Ruffner]

This time of year brings it out in all of us. I'm caring for my husband with MSA, I have Parkinson's Disease and we are scared. My husband is so much more disabled than I am and I feel like I'm losing him bit by bit. We have been together for 40 plus years and I don't want to live without him. Please don't feel sorry for needing to express what all of us are feeling every day. We understand. Ruffner

[Monkeyfeet1 in reply to Ruffner]

we’ve been together almost 30 years and I’m only in my early 50s it’s certainly not part of the plan!

[Paul_and_Sue_Wood]

Hi,This condition is a killer.... of our will. But we all have to accept, overcome and adapt to beat the defeat. Sounds easy but it isn't, the condition also changes to throw up new challenges when you least expect it.

We all have to learn and move on with help and encouragement from others. My Sue is now over 12 years into this but we are out over Christmas doing all we can visiting family and friends, enjoying what we can do and concentrating on that.

That is the biggest lesson we have learned acceptance and moving on.

Surround yourself with people who want to help and take that help up, you'll be surprised what happens and who helps. I am sure we have all found that the friends we thought would be with us on our journey have disappeared and new friends have appeared.

Hope this helps.

Christmas is for sharing.

Paul &Sue

[Monkeyfeet1 in reply to Paul_and_Sue_Wood]

thank you so much, Paul. I don’t have any autonomic features as yet so have been in denial. But I received an email from my neurologist last night to say my recent MRI shows the ‘hot cross bun’ sign. You’ve given some great advice.

[Hidden]

My husband felt the same. But you have people who love you. I can only speak from the family side, that it's so lovely to hear all the stories, shared memories and spending time together. It's such a desperate illness but live in the here and now and do what you can when you can. It's ok to feel angry, frustrated and sad. This is is what this group is for. Rant and get the angry out. You will always be heard. As far as relying on others take the help. Arrange a disability taxi, go on holiday, enjoy living. I wished we done more. But covid stole 2 years of freedom. Find a way, you won't regret it. Love and best wishes xxx

[Monkeyfeet1 in reply to Hidden]

thank you

[FredaE in reply to Monkeyfeet1]

just remind your self that every smile is a poke in the eye for "the Beast" and on a bad day two!. The only way we can win is by not allowing it to acheive its aim of ruining our lives completely.

Easier said than done but such a triumph if you enjoyed your self in spite of it.

peaceful Christmas to everyone

[ReverendBadger]

Apparently, according to my counsellor, having a cry is perfectly normal in a situation like MSA. I believe her as these professionals spend years studying to know stuff like that. She did ask how often I got upset and how long it lasts. Answer: About every couple of weeks and half an hour. Conclusion: Still normal !

Counselling may not be for everyone but personally I found it helpful. Got mine via the hospice referral. If anyone is crying all day or hating life most days would suggest its worth considering.

On the wide issuer (of how to live your somewhat shortened life) I pretty well agree with all the comments from Paul and Sue. You cannot change the cards God has dealt you but you can try to play your hand well. Some people seem to manage this quite well, others find it near impossible.

Maybe I'm in the middle. Just under 7 months from MSA DX and I'm OK with all the plans I had for my retirement being shredded, have started making new plans and done some new things. Bucket list slowley evolving.

And,as Paul and Sue said, the helpful, supportive & kind friends turn out to be a rather different group to what you expect. .So changing your mindset to live this new highly challenging life is an effort but worth doing. Fun, enjoyment, pleasures all still possible.

Feel free to interrogate me about any aspect of this , large or small. Always happy to help if I can.

[Monkeyfeet1 in reply to ReverendBadger]

thank you 🙏🏼 I’ve been given counselling details so will try to arrange something. Thank you again x

[Helenhooter]

Hiya, All you can do is look forward. I find music and seeing the grandchildren is really helpful. I try not to look back and I often think that I must have been action woman!

I had a bone marrow transplant over 17 years ago so every day is a bonus even if I'm hopeless at anything🤣I did find the book by Dr Katherine Maddox book - 'with the end in mind' extremely helpful. We are still here💪

Sending love

H

X😘

[Monkeyfeet1 in reply to Helenhooter]

I read so much. I will look it up.

Therein lies partially my difficulties. My children live with their partners but aren’t married or have children yet - something I thought would evolve. I’d have been a good nanna.

Enjoy those grandchildren x

[Helenhooter in reply to Monkeyfeet1]

I will do. Have you got any nieces or nephews with little ones? It doesn't really matter who's children they are. Youngsters are uplifting xxx

[Monkeyfeet1 in reply to Helenhooter]

sadly, I don’t. I def to teach so mods children especially at this time of year. Have a lovely Christmas x

[Helenhooter in reply to Monkeyfeet1]

You too, despite everything 😘🎄xxx

[Salpal29]

I know it! Here I am, 46 and disabled with multiple sclerosis but that's it! My ex husband moved out and then took my children, 2 boys now 15 and 13! Just aaarrrggghhh! Now just 24hr carers! Oh joy! NO!!! So I get it! Xxx

[Monkeyfeet1]

so sorry x