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Planning for the future...

Hi all I’m just after a few opinions and some advice please. I was dx’d last April and at the moment - touch wood - I have not been severely affected by my MS, but I know that could change at any time. I’ve always been a planner and an organiser, and I find it very difficult to cope with the not knowing and the unpredictable (as much as life is predictable!). Hubby and I have been talking about the future and we’ve already decided that our next house move will be to a bungalow just in case. We are mortgage free thanks to my critical illness pay out, so we’re now saving very hard and hope to be able to move in few years (5+) without taking out much of a new mortgage (the same sized property but on one level will be at least £50k more!!). But how else can I plan? I’m trying not to go overboard as the worst may never happen, but I have to have some contingency plans otherwise I worry too much! Does anyone have any suggestions? I am worried about whether we would lose part of our house if I ever need some type of care. Does anyone know about this? I have two you children and need to know they’ll be secure. Also, does anyone know of ANY company offering critical illness cover after dx (obviously excluding MS or related problems)? Unfortunately my family has a history of all types of cancers, so it worries me that I now have no cover and I haven’t found anyone willing to cover me even with exclusions. Like most of you I’m sure, I wish I knew exactly what the future held! Thanks x

Hi Emma,

I’m a bit like you in that I like to have all my ducks in a row. Unfortunately MS does not make this easy. I was dx 17 years ago and only in the last 3 or so have I needed any of the planning that you are thinking about now. In other words for more than a decade I lived a normal life in a normal house etc.

The tenet I live by now is “don’t burn bridges” If decisions need to be made I try to “future proof them” but I don’t go out of my way to seek changes that don’t yet need to be made. For example if I was moving house anyway I’d make it a bungalow but I wouldn’t move deliberately just because of some future that might never happen.

As I look back over the last 17 years I know that I did some things that an overly cautious approach would have prevented (Like living in the USA for a couple of years) I worry that you are looking too far ahead, to the end of the spectrum and care homes. Good heavens that might never happen.

It is also impossible to plan for the unknown future because your perceptions change. When I was first dx I remember saying that my worst nightmare was to be in a wheelchair with eye problems that prevented me reading. Tadaa – here I am. Well the wheelchair’s not so bad and I’ve discovered audio books. I couldn’t really have planned for that.

I know it’s worrying and you want to make sure that your children are secure but don’t forget to live life. Don’t waste the walking years worrying about a future that might never happen (I’m a small minority not an inevitability)

Jane

Beautifully said Jane. I’m afraid life, generally, is unpredictable and around each corner is the unknown, with or without MS. Don’t waste precious time and energy trying to control the, as yet, unknown. A very wise and aged Buddhist once said " inner peace begins the moment you chose not to allow another person or event to control you or your emotions" Xx

aye mrsh!

easier said than done but am learning constantly-took my vows just 3 years ago. i cant get to the temple just now (as u prob know from my previous posts) but have spent alot of time there over past 15 ish years and monks/nuns have been brill support and have helped me to make sense of my ramblings. since june it has been mostly the teachings that have given me the inner strength to go on with life despite horrendous physical issues

gosh-can u feel the love on the forum today?!

ellie x

Hello,

My first ms attack happend a week before i signed my life insurance papers. Needless to say no pay out and they won’t cover me now i have ms. Would have made life so much easier at 28, but if life was easy it would be boring.

I try not to think of what could happen, we don’t know untill we are there.

Darren

Hi Jane,I really admire your attitude and you are definitely NOT an Egyptian…In de Nile.I think because you have such a robust attitude if you haven’t thought out what could happen down the years, you and Himself would be able to cope with some different scenarios.

I know nowt 'bout insurance etc, but have wondered if extending your house to provide a wetroom and more rooms,or space for a lift might be an option.I imagine that ‘future proofing’ a bungalow might not be as easy as a bespoke extension which provides different options.

Having solutions ready to implement gives great peace of mind and allows me to get on with ‘the niff naff and trivia’ of daily life.Finally I will suggest getting around with the kids and having fun, as there’s nowt like good memories and a photo album.

Be lucky,

Wb x

Well said Jane. I completely agree. Karen x

Thanks everyone for your comments - that’s really helpful! I suppose I look at the worst case scenario as the only ‘real life’ experience I have of someone with MS was my nan. She died when I was 18 (Breast Cancer), but I don’t have any memory of her before she had some kind of walking aid. My mum and dad have told me that she was ‘ok’ in her 30s and most of her 40s, then gradually deteriorated (I guess SPMS). By the time she died she was a full time wheelchair and scooter user and had round the clock help from my grandad and a whole bunch of lovely carers. I know times have changed so it would probably have been much different today. And I fully intend to make the most of today! Two holidays booked for this year with my boys and now looking at booking next years (I did say I was a planner!). The bungalow thing is partly because we want to move closer to school - we’re on the edge of the catchment and I find myself driving most days and there’s a lovely road of bungalows right next door to school and a short walk from the secondary school. Given that I’ve got another 8 years of primary school runs before they go off to the big school, it just looked like a nice option! Jane - very wise words! It’s funny how you think you know what you can and can’t cope with but in the end you adapt because you have to. Mrs H - more wise words! Darren - that is a real kick that you were so close to signing the papers. Kind of like life in general. I’m very grateful that I had critical illness cover in place from the age of 21 when we bought the house we’re in now (I’m 33 now)…I spent years moaning about the cost of the premiums but I’m so glad we had it, especially now we have the children to worry about as well. Wb - that’s something to think about. I guess an extension or something would work well on the right house and would mean when we do move, we could actually have more space overall as houses are so much cheaper than bungalows. Never really thought about that bizarrely! Thanks again everyone x

Hi, like you I like to be organised and ready for surprises. But unfortunately we can overthink and spend too much time worrying about what might happen.

Some of your plans are good and wise. The move to a bungalow could be good, but it can also cost more than you thought…would it be possible to extend your present house instead?

A friend of mine is just completing a side extension to her house, whilst she feels able to cope with the upheaval. But she has recently started on DMDs and feels better than she has for years. So we mustn`t assume we will all end up severely disabled.

as regards insurance companies better suited to MSers, have a google to find one. i`m sure they are out there. I seem to recall them advertising in magazines.

Good luck with your plans and enjoy yourself.

luv Pollx

Thanks everyone for your comments - that’s really helpful! I suppose I look at the worst case scenario as the only ‘real life’ experience I have of someone with MS was my nan. She died when I was 18 (Breast Cancer), but I don’t have any memory of her before she had some kind of walking aid. My mum and dad have told me that she was ‘ok’ in her 30s and most of her 40s, then gradually deteriorated (I guess SPMS). By the time she died she was a full time wheelchair and scooter user and had round the clock help from my grandad and a whole bunch of lovely carers. I know times have changed so it would probably have been much different today. And I fully intend to make the most of today! Two holidays booked for this year with my boys and now looking at booking next years (I did say I was a planner!). The bungalow thing is partly because we want to move closer to school - we’re on the edge of the catchment and I find myself driving most days and there’s a lovely road of bungalows right next door to school and a short walk from the secondary school. Given that I’ve got another 8 years of primary school runs before they go off to the big school, it just looked like a nice option! Jane - very wise words! It’s funny how you think you know what you can and can’t cope with but in the end you adapt because you have to. Mrs H - more wise words! Darren - that is a real kick that you were so close to signing the papers. Kind of like life in general. I’m very grateful that I had critical illness cover in place from the age of 21 when we bought the house we’re in now (I’m 33 now)…I spent years moaning about the cost of the premiums but I’m so glad we had it, especially now we have the children to worry about as well. Wb - that’s something to think about. I guess an extension or something would work well on the right house and would mean when we do move, we could actually have more space overall as houses are so much cheaper than bungalows. Never really thought about that bizarrely! Thanks again everyone x

Thanks everyone for your comments - that’s really helpful! I suppose I look at the worst case scenario as the only ‘real life’ experience I have of someone with MS was my nan. She died when I was 18 (Breast Cancer), but I don’t have any memory of her before she had some kind of walking aid. My mum and dad have told me that she was ‘ok’ in her 30s and most of her 40s, then gradually deteriorated (I guess SPMS). By the time she died she was a full time wheelchair and scooter user and had round the clock help from my grandad and a whole bunch of lovely carers. I know times have changed so it would probably have been much different today. And I fully intend to make the most of today! Two holidays booked for this year with my boys and now looking at booking next years (I did say I was a planner!). The bungalow thing is partly because we want to move closer to school - we’re on the edge of the catchment and I find myself driving most days and there’s a lovely road of bungalows right next door to school and a short walk from the secondary school. Given that I’ve got another 8 years of primary school runs before they go off to the big school, it just looked like a nice option! Jane - very wise words! It’s funny how you think you know what you can and can’t cope with but in the end you adapt because you have to. Mrs H - more wise words! Darren - that is a real kick that you were so close to signing the papers. Kind of like life in general. I’m very grateful that I had critical illness cover in place from the age of 21 when we bought the house we’re in now (I’m 33 now)…I spent years moaning about the cost of the premiums but I’m so glad we had it, especially now we have the children to worry about as well. Wb - that’s something to think about. I guess an extension or something would work well on the right house and would mean when we do move, we could actually have more space overall as houses are so much cheaper than bungalows. Never really thought about that bizarrely! Thanks again everyone x

Thanks everyone for your comments - that’s really helpful! I suppose I look at the worst case scenario as the only ‘real life’ experience I have of someone with MS was my nan. She died when I was 18 (Breast Cancer), but I don’t have any memory of her before she had some kind of walking aid. My mum and dad have told me that she was ‘ok’ in her 30s and most of her 40s, then gradually deteriorated (I guess SPMS). By the time she died she was a full time wheelchair and scooter user and had round the clock help from my grandad and a whole bunch of lovely carers. I know times have changed so it would probably have been much different today. And I fully intend to make the most of today! Two holidays booked for this year with my boys and now looking at booking next years (I did say I was a planner!). The bungalow thing is partly because we want to move closer to school - we’re on the edge of the catchment and I find myself driving most days and there’s a lovely road of bungalows right next door to school and a short walk from the secondary school. Given that I’ve got another 8 years of primary school runs before they go off to the big school, it just looked like a nice option! Jane - very wise words! It’s funny how you think you know what you can and can’t cope with but in the end you adapt because you have to. Mrs H - more wise words! Darren - that is a real kick that you were so close to signing the papers. Kind of like life in general. I’m very grateful that I had critical illness cover in place from the age of 21 when we bought the house we’re in now (I’m 33 now)…I spent years moaning about the cost of the premiums but I’m so glad we had it, especially now we have the children to worry about as well. Wb - that’s something to think about. I guess an extension or something would work well on the right house and would mean when we do move, we could actually have more space overall as houses are so much cheaper than bungalows. Never really thought about that bizarrely! Thanks again everyone x

So sorry about my multiple posts - iPhone is playing me up!!!

Thanks Poll I don’t think we could do a lot with our current house as we’re joined completely on one side and joined by an upstairs room over the carport on the other side! And typical new build it has a not-very-generous garden! But maybe we’ll just move to another house and work from there. Bungalows are so much more expensive and quite hard to come by around here - and so many have had loft conversions anyway! I found one this week which had pretty much the same square footage as our house and it was £80k more expensive!!! Add on stamp duty and moving costs and maybe a house would be better! Very good to hear your friend is doing well x