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Where to start?

I was diagnosed with RRMS 24 years ago. Until 2016, I had relapses that I dealt with without any medical intervention. In August 2016, I had my worse relapse to date and completely loss the use of my right leg. I was prescribed steroids and within 2 weeks, I was mobile again. A month or so later, I was pretty much back to normal. In the last year my ability to walk has declined. In June 2018, I caved in and started using a stick. By the start of September, I bought a seated rollator and now I really struggle to walk without holding onto something. My neurologist tells me that SPMS normally occurs 25 years after diagnosis so the fact that I can barely walk is what I may be like from now on. This has crept up on me, not a normal relapse, and I can’t see a day where I will ever be better.

Now on top of this, I live in a first floor flat with 17 steps to my level. I have just had my bathroom ripped out and have a lovely wet room and don’t want to move but those stairs are sooo hard to climb when I get home from work. Has anyone managed to get funding for a stair lift? If so, who do I need to approach?

Also, my husband is keen to move as we are on the side of a hill and the pavements are rubbish for a rollator. What options do we have? Is there such a thing as sheltered houses which include medical support? I just feel my life is rolling out of control. My car lease runs out in February and I can’t justify the cost of running a car because my work has given me till Christmas to find a new job, then I’m out of work. I’ve had 5 interviews but no one wants to take me on when I can barely stand up! Nothing wrong with my brain, but the interviewers don’t see past the rollator. So I’m facing a future with no job, no car, potentially having to move home and my legs don’t want to work, with no possible remission in sight.

I’m sure others have been in a similar situation so how do you cope ? Who can I turn to for help? I want to scream at the world at the unfairness of it all but I have to have a plan, I have to move on. If this is life now, I have to adjust but it’s so hard. Help!

Hi

Sorry you’re having such a hard time of it all! I’ve had that urge to just scream too, so I’ve done it a few times. But I bury my face into a cushion when I do it, so as not to disturb the neighbours .

In terms of practical help, your local council may provide grants for things like a stair lift. They’re also the people to go to in order to find out about going on the housing list for an accessible property (you could always search estate agents for accessible places to rent privately). Speak to your MS nurse or GP as well, and ask about being referred to an OT, as they could provide support.

And in terms of emotional support, you can always come on here of course. Is there a local branch of the MS Society or MS Trust? If so, they’ll probably have social groups you could go to. For me personally, the way I cope is to lean very heavily on my God, and take the time to see the beauty in things around me & savour those little moments of goodness, talk to friends about how I’m doing, learn things, be thankful, and look for ways I can help people. It’s hard work, but I’d be a mess without God helping me to do those things

Dan

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Hello

I think your neurologist is talking about averages rather than the ‘norm’ with regard to the time of change change from RR to SP.

I’ve had MS for almost 22 years, a couple of years ago my neurologist said it appears that I was ‘now in a progressive phase of the disease’. Then a few weeks ago I had a relapse, a proper relapse: my left leg went dead, and I couldn’t make a fist type of relapse. It was completely resolved very quickly with steroids. Now you could say I’m ‘progressive relapsing’, or still RR. Regardless of the label, I had a relapse in spite of being labelled SP.

On the other hand, not only did I never recover completely from a very nasty relapse in 2012, but I’ve been slowly declining over years and am now very disabled.

So, the point here is that MS is a contrary beast. It does what it wants to do regardless of label. You may still get further remission from your latest disability, and you might improve things with physiotherapy, you may not.

Your husband may be right about moving before you absolutely have to. But a stair lift might make it possible to stay where you are. I certainly couldn’t live anywhere without step free access and being on completely one level as I’m a wheelchair user.

There is of course sheltered housing for the over 50s (you don’t say what age you are), but generally they are independent units with a warden but it’s easier to get help in a crisis from such accommodation. And of course, it’s easier to get accessibility in sheltered housing. I don’t know about the equivalent for the disabled younger people.

What you could do is investigate the possibility of getting PIP now you are more in need of support. Have a look at Personal Independence Payment - Citizens Advice

Depending on the distance you can walk, safely, reliably and repeatedly, you may even be entitled to higher rate PIP for mobility, which then entitles you to a Motability car.

Screaming ‘it’s bloody unfair’ is always an option, and one I reserve the right to at all times. It’s not fair. It makes life flipping hard. There are no simple answers. But there is always empathy and fellow feeling available here.

Sue

Have all correct procedures been followed by your work? Under the Equality act you have the protected characteristic of disability and some things such as reasonable adjustments have to be made for you by law.Please excuse me if i am wrong and you have investigated all this properly with an adviser,but from the little you say i would hazzard a guess they are trying to avoid the “hassle” and spinning it as if they are doing you a favour by giving you a few months to find something else!

Try this link for the equality commission equalityhumanrights.com/en/equality-act they have a helpline you can phone and i think they could get involved directly with your employers with your permission.Dont let them bully you out,and if they do get them to a tribunal later.

Sorry but bad employers are a bit of an obsession for me so i jumped on that bit,but good luck with everthing!

Ollie