Forum

I wish this was more predictable

We need to move house, coz I need a downstairs loo. I can still manage stairs slowly and very ungainly, and am reluctant to move to a bungalow ( also there are very few out there), but I wish I could plan how long I will be able to manage stairs, to see if we can move to a house with a downstairs loo and stairs, or whether we have to look for a bungalow-haven’t found one that we could afford!!! Been thinking like this for years and now we are both fed up and can’t talk to hubby about it anymore as he thinks bungalow and I’m sticking out for suitable house. Am I kidding myself?

Why can’t this ms thing be more predictable, I know everyone is different a buta how are we supposed to make big decisions!!!

frustrated

We had the same dilemma for about 2 years to move or not to move. We also had stairs which I was having difficulties with.

We thought bungalow but they are so expensive where we live. Then we saw a development that had self contained flats with a small garden. We bought off plan and managed to negotiate a good deal. We really wasn’t sure what we were getting and we had to sell our own house and go into suitable rented accommodation until the flat was ready. It was very stressful but now that we are in it was well worth it, we have everything we need and the house is wheelchair friendly if needed.

i would say do it while you still feel well enough as it takes a lot out of you.

Mags xx

Do what you think is best.

We’ve tended to plan for the worst case scenario.

We’ve just moved to a bungalow (I could no longer do the stairs at our previous house safely on my own), the bungalow needed quite a bit of work doing to it anyway (built 40 years ago and nothing has been done since so it needed rewiring etc.) so while we were at it we put in solid floors and widened the doorways in case I use a wheel chair in the future. It made sense practically as well as financially to do these things now rather than at a point in the future.

Moving is expensive and a hassle, I couldn’t cope with it more than once.

Hi Slug . Would it be possible to have a downstairs loo built on in any way… maybe an extension on a utility room? Just a thought, as that’s what we’ve got here. As for the stairs - I’m looking forward to whizzing up and down on a stairlift when the time comes. lol

Hazel x

were in the same position,we sold our house the day after it went on the market,which shocked me really,we intended to look for a bungalow,but the ones we liked we couldnt afford,so we took ours off the market after a few weeks as i didnt want to move to another house,we have a downstairs toilet which is handy and i have a stai,solift so can manage for now,but i would have loved a bungalow though,the ones i loved were all about £30,000 too much so unless we win the lottery it aint going to happen.

J x

Moving house is extremely expensive and absolutely exhausting. Why do it twice when you could do it once? I’m with your OH on this one!

Alison

I convinced myself that a house with a downstairs loo would be OK - and it was for a while but the time to use a wheelchair finally arrived. By this time the credit crunch had gashed it’s teeth and I couldn’t get another mortgage, nor could I actually afford a bungalow. I was lucky because I got a social tenancy for a fully converted bungalow. Looking back when I moved into the house 10 years ago I should have been more sensible and waited for something on one floor (I think I never really expected to go secondary progressive) but then hindsight is a wonderful thing!

Jane

Thank you everyone for your thoughts. Hazel, yes I’m afraid we have considered everything but not possible, shame.

small part of me thinks that once you give up stairs, won’t manage them at all, so probably unrealistically holding out… Big thanks xx

We decided to downsize soon after my diagnosis nine years ago. We had to leave the home we had thought was our ideal home. I loved that house. We did have a downstairs loo, but with four bedrooms and only two of us, and having to give up work it was too big and too expensive to run. You say you wish the MS was more predictable to help you decide.

i was told my MS was “mild” I really don’t know where or how three different neurologists arrived at that definition, given the well documented unpredictable nature of MS. That gave me cause for optimism, I thought that would mean there’d be little, or no change for years. The deterioration has been constant. However, I digress.

We opted for a bungalow, but of course you get a lot less property for the money compared to a house. It does have a staircase into a loft room, and I used to go upstairs at least once a day, thinking, use it, or lose it. I’ve not been able to do the stairs for about three or four years now, so my best efforts failed. We looked at flats, but most modern ones are open plan and I don’t like my kitchen in my living room, also we didn’t think we were ready to give up outside space, almost unbelievably a lot of first, second and third floor flats didn’t have lifts! and hubby wanted a garage.

We also decided we didn’t want to move twice, the next one being a wooden box with tin handles, so we thought a bungalow was future proof. Moving is too stressful and expensive to want to do it often! Again with the “mild” label we thought there’s not be much work to do, other than cosmetic. We had a new bathroom put in and replaced the bath with a shower. Thinking that would be all I’d need. If we’d known then what we know now we’d have made it a wet room. I’m now pretty close to needing a wet room, but we can’t afford it. I didn’t think the two steps up into the bungalow would ever be a problem with “mild” MS, but now we’re facing a hefty bill for alterations at the front door, for which we are having to get a loan because we can’t get any help. I can’t even get up those two steps now. I use crutches at home, wheelchair everywhere else. Unless this “mild” thing stops or slows down which doesn’t seem likely I’ll need the wheelchair indoors soon.

If I hadn’t been given the “mild” tag I think we’d have looked at properties differently, although there were so few bungalows on the market in the area we wanted to be we may well still have ended up in this one, but with hindsight we should have future proofed it when we moved in - step free access, wet room, widened doorways, instead we’ve had to do some things twice.

I wish you lots of luck with your decision and hope you find the home you want. xx

Flowerpot, your comment about ‘mild MS’ reminded me of a Victoria Wood line about the definition of ‘minor surgery’.

‘Minor surgery,’ she said, ‘is surgery that is happening to somebody else.’

A

1 Like

Think twice, buy once!

With hindsight (mine is 20/20) we should have moved 10 years ago.
Everything is a tradeoff. You have to consider what you need, not what you want.

We have seen a few bungalows with steps that would need ramping in the future.
Can the bathroom be turned into a wetroom (or even a low access shower)?
If you look at a house, are the stairs straight or curved (curved will put the price of a stair-lift up about 3-4 times)?
Can you look after that lovely garden in five years time?
Ground floor loo is one thing - downstairs bedroom is different.
Are you stuck with a house where you can only do things one way?

A lot of the modifications we would like are constrained by the way that the house was built. The shower conversion would only go in one way (floor joists). Converting the “rustic” downstairs loo to a modern one means rebuilding the back of the house (water supply comes up in an inconvenient place in a concrete floor). The same water supply come up in a concrete floor in the kitchen (that constrained the layout a fair bit) but goes on under the floor to supply our neighbour (Victorian semis). Want to change the bedroom round? Fine, but you cannot move the pendant light switch to be over the bed anywhere else. And so it goes on.

If we moved now, we would lose the feeling of space from the 26’ through lounge (actually built like that 120 years ago).
We would lose the garden (1/6th of an acre) that is under a mile from the middle of town. And which we need others to maintain for us.
So we looked at how much space we actually use, and considered a ground floor flat. So where do all my computers go? Where does my photographic kit go? I have 8 boxfiles full of genealogy stuff (and enough paper to fill another four). This could imply a serious lifestyle change. If we move, we have to consider that this might also mean a change of GP Surgery, a change of Hospitals for one of us (remember that my wife has Parkinsons), a change of Neurology or MS nurse for one of us, a change of phone number, etc etc …

Think twice, buy once!

Geoff

Funnily enough when we moved our options were severely restricted because we wanted to stay within the catchment area for our GP surgery.

There are areas nearby where we’d have had a lot more choice and got a lot more bungalow for our money, but outside the catchment area.

We could have ticked more if the boxes but for the location thing.

Hi Slug,

Don’t you just hate how this thing makes the difficult life decisions more complicated!

I am only just diagnosed I live alone in my one bedroom house with curved stairs and upstairs bathroom and toilet, I have some mobility issues and have thought about the stairs. I love my house and like going upstairs to bed but if it comes a choice between independence and a bungalow I will look to move.

I went to my dentist recently and as I climbed the steep narrow stairs thought if my mobility continues to worsen how will I get up here, I asked the dentist, they have no way for disabled people to get up to them and no downstairs rooms. So I will look to move dentists in the near future before it is an issue to make life easy.

My thought would be is it not easier to move once to a ground floor home on one level while you can still help hubby with the move and then if your mobility gets worse in future you won’t have to move again.

I get what you say about stairs too I have always though use it or lose it but there are stairs in public places you could consciously use.

Good Luck, whatever you decide.

Snowqueen x

Thank you all for comments.

Last night I felt quite depressed as I acknowledged that a bungalow was the answer- never mind cost or reality of finding one that suits me and the family’s needs-but accepting that I should no longer be considering a ‘normal’ house, when upto now I have been managing a young family and trying to fool myself I was coping, when at 45 I really need to be considering the needs of a disabled person.

YES I know I’m disabled, I’ve got a scooter and crutches and a blue badge to prove it!!! But I’m also a mum to youngish children and wife, and I felt I was coping and then this acceptance affected my brain.

so I slept (normal not great nights sleep) and woke this morning, and everything is ok again. I’m clean and dressed and kids off to school fed and watered, and life goes on.

as some of the comments above show, everyone has got difficult decisions, some are just starting out with homes, and flats and other considerations so cheers to you all and wish you good luck with your choices. Thanks have a smashing day xx

1 Like

Another day can always allow us to see things differently.

Have you looked in your area for disabled grants?

In our area Gloucester I am awaiting to be assessed even though we own our home there are grants available. We need a stairlift. I can do the stairs going up, its coming down i falter but my husband too who is nearly 70 has COPD and struggles the stairs. We might get the grant, we might not but at least its there to try. We did save hard and put in a shower room for me, but struggling now we are both pension age to get enough to put a stairlift in because of our stairs being turn around.

I want to move we live in a large ex council house with huge garden. My husband doesnt want to move. If I didnt have hubby i would be long gone lol.

Its not just being disabled for me its being 64 nearly and having a massive garden i really dont need, and a big house suitable for a lovely family to enjoy. My cleaner is just dusting 2 empty bedrooms.

Yes its stressful to move even when we are fully well, but practicalities for me are more important, i have stress all the time worrying about this place lol.

I am not sure i would necessarily move into a bungalow but a smaller house with a stair lift would be fine.

Ah well tomorrow is another day. xx