That question? So where do you see yourself in 5 years....

Everyday living
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Well I am in the process of selling my house, its actually got as far as me signing contract and change over on the Land Registry so just hoping this time it will go through to completion.

I thought it would be prudent to have a financial expert come to see me as i have know idea what to do with the money that will be coming my way, and would like some of it to work for me.

Anywoo he came yesterday. The upshot of it was the burning question…

He could invest some of my money for me for five years where by I could take out quite a good savings. He asked me “I take it you will be happy with that”? So I sat and pondered and gave him a shock … thinking about it seriously I felt would i want to still be here in five years…"?

I suddenly couldn’t see a future for me that far away. All I could see was pain and deterioration. I shocked myself by saying "to be honest I cant see myself being here in five years…and for the life of me I couldn’t.

My care worker was in ear shot, and she said your stronger then you realise, my other guy i work with says the same but he is still going.

As much as I could i wanted to be positive, but couldn’t be. I wasn’t being morbid or scared just matter of fact.

He was taken aback by my statement, and said ah well then there isn’t much i can do to help you, but we carried on chatting and he gave me lots of ideas on what to do with the money.

When he left I sat there and really thought about it. In five years I would be 73, i am barely walking now I had seen the ends of others people MS, where they end up bed bound and bloated and a burden on family.

No I actually hope that i am spared all that. Am I being morbid, should I be fighting more for myself?

I lost my husband he had COPD he wasn’t terminal, and yet without warning his illness took him from me at 71 just when we thought we were going to have a life together.

So how can you predict how long you will be here… I might suddenly change and get more active who knows.

But I couldn’t in all honesty answer that.

I am happy have had a great life really great, i would love to live for a much longer time obviously and enjoy my family, but it was kind of a wake up call when I realised I couldn’t see a future as far as five years away. So now I am going to do as much as i can in my life and enjoy what time is left.

You never know i might win a million on the premium bonds, who knows, but for now, I am taking my life out of the shroud of self pity and MS and going to enjoy it again.

MS has robbed so much from me. Its time I took my time back.

But it was an interesting question.

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Hello Chick

You are 100% correct, MS has robbed us and you need to enjoy yourself right now.

I am the same age as you and I try my best to do what I enjoy.

Forget the financial advisor they just want to take a cut of your pot of money and invest it long term for a rainy day, it is already raining.

I go on lots of cruises with my little scooter, in a disabled cabin and I am independent and can do what I want on ship or ashore.

Going in the morning to the Caribean for 14 days and England are playing a test match against the Windis at St LucIa on 9th February and I am joining the Barmy Army to cheer them on because they are struggling like me.

Make the most of life today Chick.

Bertie

XXX

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Hello CC

Yes, it is an interesting question. I’m 52 (and a week) and quite seriously disabled. I don’t plan on getting to State Pension age, which in my case will be 67. So 15 years from now. If I continue to progress (and I can’t really see any chance that won’t happen), then I’ll be utterly incapable by then, probably needing carers and having no real quality of life at all. If I reach that stage, I’ll probably be wrecking what’s left of my lovely husband’s life. And will have been wrecking it for quite some time.

So to be honest, I’d be happier with 5 to 8 decent-ish years, even as disabled as I am and omg I do so wish assisted suicide was legal in the U.K. I don’t really fancy Switzerland!! Hopefully by the time I need it, it will be legal!

David, your cruise sounds fabulous (apart from the Barmy Army bit!). You are so right about living for the now. My OH and myself have been on one cruise and have a couple more set up for this year, the next one in 9 weeks time, just a week going to Spain and Portugal. Really looking forward to that. And cruises are definitely my preferred holiday now. After flying to India last year, I vowed not to fly again. And Southampton is only an hours drive away. Once there, it’s minutes to be on board and then the holiday starts.

Our (Mr Sssue and me) plan now is to do what we can while we are able. And luckily we can afford to do a bit of travelling, so long as we have fairly modest ambitions.

Taking your life back is a good plan. And having sold your house (touch wood), you’ll have some money to do interesting things with. It’s time to start planning what you want to do with the life you have still got.

Sue

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That’s a question I’m afraid to think about. I know 5 years ago I was smashing up my old concrete garden path with a sledgehammer and now I’m struggling just to make it around the house.

My neuro said I’d progressed in one year what he would’ve expected me to have progressed in 10 years.

5 years from now is a scary thought. I’m only hoping that the Lemtrada I had does its thing.

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Hello everyone. Interesting chat going on here. Something that’s been running through my mind recently. I’m 59 (and three weeks!). My progression since my diagnosis aged 55 has been extremely quick. I’m barely able to get around the house with my walker and use a wheelchair outside. I have very little use of my right hand. I’m relying on my husband for most things and couldn’t manage without him. His sister is currently in the last stages of life abroad. She joined Dignitas some years ago but is too weak to travel now. It’s had my mind racing about what lies ahead of me.

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Sue.

What is wrong with the Barmy Army.

Watching the test match now in Antigua it is about 6 pm there and they are in full voice, full of ale but who cares

Look out for me in St Lucia, be on my scooter on the grassy mound drinking a Carib beer, hope the camera will focus on me.

We need a wicket only 20 minutes left.

Going bed at close of play, need to be up at 4 am

Stay positive everyone.

David

Barmy Army

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What has happened to your sister-in-law is what frightens me most. The desire to have it all over with and yet having no means to make it happen.

I suspect those of us with no children and maybe less close family might worry more about that than others. Ie less people to worry about.

Hopefully all is not too awful for you at the moment Pops.

Blimey isn’t MS crap?

Sue x

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David

Have a fabulous time. I hope your cruise is fabulous and that England do you proud.

I’ve just told Mr Sssue to look out for a chap in St Lucia on a scooter drinking a Carib beer. Chances are he’ll be watching.

Enjoy every minute.

Sue

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It’s pretty awful Sue but like everything else, there’s nothing to be done about anything. Sister in law is receiving nutrition intravenously,has had several fits post surgery and is doped up with morphine. She has no idea where she is. Her son and husband taking shifts sitting with her, have told my husband,they wish her passing would actually hurry up. What a way for anyone’s life to come to an end and for nobody to be able to take control.

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It’s crap sure enough. It’s why I’ve got an advanced directive stating what my wishes are should I be incapable. But even one of those (should it have any legal status where you live, I bet they don’t in Ireland!) doesn’t cover the kind of situation your sister in law is in.

How awful to watch someone die when you know what their wishes were. The family have my sympathies.

Sue

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The morning of the surgery, in the presence of her husband,she told the surgeon if when they went in, it was hopeless, they were to let her go in the operating theatre. Of course it’s unethical and she was taken to the recovery room.

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I wish hun. I find just going out to sign my house contract was enough for me. It has left me exhausted and in pain 2 days already. I would love to go on holiday but i think my brain decided its too much to keep me safe.

I am trying to stay positive. I wont be giving my money to anyone lol, he was good actually and gave me some good ideas on what to do with it, without charging me lol.

My friend is just coming back from a cruise from Caribean but she hasnt got MS and had a wonderful holiday.

Enjoy it for us both.

xxxxxxxxxx

Some interesting posts. Yes I have already told my children if i suddenly go down hill with something I dont want help. I have lost 3 friends lately to terrible cancers, 2 with bone and one with breast which spread. OMG no one should be allowed to die like that. I just dont see what is wrong in assisted death, we have assisted life.

Obviously it has to be properly regulated but really they allow animals to end their suffering but not humans. Makes no sense to me.

But i am not ready to give up yet. My daughters need me still. xx

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I inherited some money from my mom in 2017 and thought about a financial advisor, but they want to charge an arm and a leg so relied on the internet and talking to family and friends. In 5 yrs, I’ll be 66 and my pension kicks in.

First off, with an eye to the future, I paid for a funeral plan. Updated my will. Arranged for POA both finance and health, for myself. That spent a few thou.

Put some of the money in a 5 yr fixed bond. You can’t touch it for 5 yrs. Which is something as the inheritance meant we don’t get ESA anymore. Nor DP. Nor HB. Partners had a review of PIP…(do they think he grew a pair of kidneys in the last 2 years???) And then there is the shadow of UC.

I never had much money and the inheritance was not not HUGE, but it enabled me to buy an off road wheelchair £10.000 - any its been worth every £. My rationale is enjoy life now. Be wise and budget as well, but if there is stuff going to make you life easier - car, adaptions, social care, then spend the money on it now!

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David, Might have to tweet Bumble, get him to look out for you!..not many pigeons in St Lucia. lol

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The Tissue Bank. https://www.mssociety.org.uk/research/explore-our-research/research-we-fund/search-our-research-projects/ms-society-tissue-bank

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