I Have MS And I Am Too Expensive
I am facing a new problem.
This house is getting harder for me to live in. We are back on the list to be moved to home more suitable for my own needs.
Yes I am already in a LHA home, but this one is presenting new obstacles for me, but please bare in mind, these are not free and we pay our rent every month.
I am back on the list, we have fought our way to gold plus banding, with my medical needs. Not an easy process I can assure you.
I noticed on my recent letter that I will only be allowed to bid on flats and bungalows. Something which tend to be rarer than flying pigs these days.
I called the council with my concerns.
See this house has one bathroom downstairs, so it makes going to the toilet in the night a real “mission impossible” for me. I struggle with stairs. Which leads me to my next point. Our staircase is too narrow for a stairlift, especially when you have to factor in, the normal use of the stairs for the rest of the family.
With the phone call I was met with the worst possible news ever.
That because of my Multiple Sclerosis, they would not allow me to have a home that needed adapting, because “they cannot afford to adapt a home for people with MS anymore”
I mentioned that I would try and gain the funding for this myself. With the help of my OT. They said “we still wouldn’t put you here because we don’t want our new homes changed”
Today saw another phone call.
A different lady said once again. We are not adapting our new homes. We have adapted far too many in the past.
The lady on the previous call also said to me “you have to face facts, you will get worse, and we won’t pay for that”
Now, after I have cried all the tears, which trust me these last few days I have.
Not only am I a burden on my whole family. But now I am a burden on the people who are meant to be there to help people like me. I expect this from a private rent, but never from multiple LHAs.
Please let me reiterate. These homes are not free. We pay our rent.
I am now faced with discrimination due to having a disease I DIDN’T ASK FOR.
I don’t want to be here. I don’t want to be living in my body and forcing my family to live with this disease.
But its happened. And I am living it everyday.
I live quietly through the pain, the appointments, the needles, the questions, the everything.
And now I am being told that ‘people like me’ cannot live in a normal home. because after all, I still have a normal family. A family who just want to live like everyone else.
But we can’t have a home with a toilet both upstairs and down because they won’t adapt homes for people like me anymore.
People like me?
I need help. Even more so now than ever.
So please share this post, because I am looking for answers. I want to know who told the LHA it was okay to say no to ‘people like me’ because they don’t want to change their homes anymore. They suddenly don’t have to be there the help ‘people like me’ when that was their whole intention in the first place.
To be a lifeline for ‘people like me’
But not anymore.
Because I have MS and I am too expensive.