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!