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Having MS is expensive!

Just an observation - MS is quite an expensive thing to have:

I live in a rented bungalow - they are more expensive to buy than houses with stairs

I drive an automatic car - thirstier than manual cars and more expensive to buy (thankfully I got mine through Motability)

I bought a mobility scooter so that I can walk my dog - from what I was paying a dog walker, it will pay for itself in about 4 years

I am about to give up working and try to survive on a small pension and what the government call benefits

I can’t take advantage of the fine weather very often and hang washing out so my tumble drier gets used more often than it would if I was more able

I have had to buy several new pairs of shoes as my ability to walk in heels has dwindled

I pay for alternative therapies - vitamins, LDN, HBO, etc

The list goes on!

Luisa x

Hi Luisa.

I totally agree, the same as you, automatic car, car adapted to left foot accelerator, driving assessment, mobility scooter, bathroom refit, arm crutches, etc, etc.

All completely paid for by myself.

Take care.

Chris R.

I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor.

Yes i too agree, Ive long said the DLA payments dont even touch the corners of what we need to lay out in order to occupy the world of the so called ‘normal’. Cant even buy a pastie without VAT now if it dares to warm ones tum on a very cold day (not that I buy them but next will it be breathing which is taxed?)

Youve gott laugh or we would cry when they talk about reducing benefits of the poor! Never thought Id hear it but alas in 2013 it will began - I believe already child tax credits are being eradicated for some of the lowest paid.

Ive had to have step into bungalow built because there was none, safety bars installed, had all beds in the garden raised so I can reach them, bought walking sticks, altered all my floor coverings because they were dangerous, changed taps, bought scooter and need my car maintained etc. Its very much a worry of what will be?

Take care,

bren

x

I’ve just flexed my overdraft to buy a powerchair. Now I need to change my motability car to put it in. Prepay charges plus the hoist.

I know that it is irresponsible to go into debt to get these things but I am very aware that my window of opportunity is closing. If I wait to meet the NHS criteria for an outdoor chair I probably won’t have the ability/will to use it. DLA goes nowhere to cover the costs of trying to maintain the semblance of a normal life.

Jane

Luckily I’m not on very many NHS prescribed drugs - but if I was, it wouldn’t be a problem - I live in Scotland and prescriptions are currently free.

L x

Hi, yes I agree…having a chronic, progressive condition is an on-going expense for us too!

Since 2000, I have bought 5 wheelchairs and 1 scooter, needed 3 new washers, `cos they are on so much, and break down, plus had to buy extra bedding to cope with accidents, need more showers than most, Bought many pairs of nix, skirts, trousers, in an effort to find which is quicker to remove, when needing urgent trips to the loo.

The house needs constant repairs and alterations to fix areas i keep trying to demolish in my wheelie.

Yes, the list grows and will constantly do so.

Such is life, eh?

luv Pollx

me again…got summat else to add to my list of added expense;

electricity bill for;

washing machine on daily for bedding and clothes due to accidents

recliner/riser chair

profile bed

hoist

This lot must add up to a small fortune, eh?

luv Pollx

Thanks Rebecca for the info. We`re already on the social tariff for cheaper fuel.

i have had a ceiling hoist put in via DFG/MS grant.

luv Pollx

Couldnt agree more - Im having to spend thousands to get our house ready to sell then thousands on buying a bungalow which will undoutably be smaller than our house but at least acessable and suitable for me but not for my husband or children.

OK RANT TIME!..

Can somebody please tell me why I cant work get incappacity benifit and therefore no help with dentist opticians free meals etc. But if I could work and got income support Id get this help. Please dont get me wrong I know there are thousands out there who cant find work but I also know there are thousands playing the system and in the mean time a disease I didnt ask for has stopped me working and has put my family in the position were in.

Because IB is £94.25 per week and Income support is £67.50 (Based on a single person - if you had a working partner you probably wouldn’t get IS at all.)

Don’t get me wrong I think benefits are wofully inadequate for everyone but IS is the bottom of the totem pole and barely enough to buy food let alone a trip to the dentists

To add to my list - I’ve just had to order a new set of plates after smashing most of my existing set - I’m going for melamine ones this time, they won’t break so easily. The most annoying thing is that I drop the plates when I’m putting them away after they’ve been washed!

Also I pay somebody to do my garden for me - mainly cutting grass, I got him to rip out all the other plants last summer, so minimum maintenance, but it still costs money. I did have a go at cutting the grass myself when I first moved into this house, but only got 1/10 of it done before I couldn’t walk.

L x

There are certain ‘benefts’ though. The Cinema Exhibitors Card means a free ticket for a carer, and the holder often gets the concession price, which means at my local independent cinema it’s just £4.60 for 2 tickets as opposed to over £8 for one ticket at Cineworld. And most other places like football matches or the theatre do the same thing. I’d never go to them if I wasn’t able to go so cheaply. Like when Portsmouth won the FA Cup a few years ago, it cost just £18 for two tickets. Or my wife & I saw Ian Mckellan, Patrick Stewart and Simon Callow in Waiting for Godot for £34, whereas it would have cost us £90 otherwise, as the disabled seats had to be in the most expensive section. And don’t forget the free parking.

Obviously I’d rather not be disabled, but at least I go to a lot more football or comedy or shows than I would otherwise.

Dan

Rebecca, if I owned the house I would not have anything growing in the garden at all - slabs and chuckies all the way, I hate gardening and I hate beasties, so the less things growing the better. However I rent the house, and there’s only so much money I’m prepared to pay for garden alterations, and the garden is quite big, it would cost a fortune to do it - I’ve already paid to put a driveway in so that I can park close to the house.

L x

Vue cinema does a Sunday ticket deal, it’s about £3 per ticket, and my friends and I have all joined Tastecard so a Sunday night film and restaurant food usually costs less than £15 each which is a bargain. Yes, I get my car through Motability, and I have a blue parking badge, but those savings do not really weigh up against the other costs involved in having this stupid disease.

If I didn’t have MS I could work full-time in a decent job and then I wouldn’t have to worry so much about where the money was coming from for nights out.

L x

plus does anyone else buy crappy ‘good idea’ items , that when you get, find you can’t use because of symptoms ? , eg , I recently bought a hood with a built in lower face cover for those cold days with T.N. face pain ! , well for my £20 I got a lovely warm bit of head gear that I can’t wear because of unbearable neck pressure

John

just me then

Not just you, I bought a stand for the hairdyer, can’t hold it myself…any hairdryer is actually too heavy and it just tips over, useless item!

phew not just me I think the trouble is that being stuck in so much, makes me start to believe shopping channels , I won’t mention the B.O.G.O.F. sunglasses I recently bought

Subscribe to Ebay, sell on the rubbish that you accumulate, but wait until they do a free listing day so it doesn’t cost very much to sell - if you even get a fraction of what you paid, it’s money in your pocket and space in your house that would not otherwise be there. Try not to do what I do and spend that money on more rubbish on Ebay!

L x

All I have to say is BOGOF! Oft heard phrase in this house is…but I only want ONE!..so end up with none…having said that, the phrase ‘not only that, but you also get…’ is very annoying, ‘no, no, I don’t want any of that as well!’ it is usually some totally unrelated item, that obviously no one wanted two of either. lol, I waited so long to find out the price of the EZ bed that I fell asleep…

Alison x