I Have MS And I Am Too Expensive, Take 2

I felt it only right to post an update here regarding my post here.

Today I met with the housing association I am currently a tenant under. They were really nice, they were also shocked at what has been said. However their hands are tied by what Home choice plus, the department which deals with housing and decides on banding  and room numbers, say.

This is run by my local council, Wychavon district council.

Whom have a duty to make sure my family are adequately housed. Which we are not.

They refuse to look at separate situations for what they really are.

After all, no two families are the same. 

I have provided all the evidence I can, which I really hope they have read. But due to their decision, it looks like it may have had a quick skim at most.

I live in the middle of several counties. So we have many different LHAs around.

One of which was the one who reiterated that I would not be put in a new home, because they didn’t want them changed. She said it to me like it was something I should have known. Like a given thing?

More than likely taking their script from Home choice plus.

As time moves on I am tiring of fighting.

If its not the benefit system, its housing and vice versa.

When will the people who are meant to help, realise that no two cases are ever the same. And actually listen to each person and their needs.

Instead we are all grouped together. Expected to repeatedly prove ourselves and jump though as may hoops as they feel like throwing.

How is that fair?

Daily I have to be reminded I am never getting better, yet I will spend every few years fighting the same fight over and over again.

When will they realise lifelong means forever?

I will never get better, never be the same.

I do all the tests, have all the scans and go through all the prodding for  what?

For the government of course. Because without that proof, I would fail to jump though those hoops any more.

It has gotten to the stage where its not even for me.

When did society become so cruel?

because one again, I have MS and I am too expensive.

 

 

The MS Society Awards 2014

MS logo1024x605 The MS Society Awards 2014

When I started this blog, it was for me.

It was entirely selfish.

I found myself in a whirlwind of appointments, letters and information and I had no idea how to process everything as well as make sense of it all at the same time. 

So I came here. And I wrote.

Daily I wrote about me. How I felt, or didnt feel.

How I felt about the affects on my family.

How I made it through relapse after relapse.

To some who didnt understand, it probably seemed totally “woe is me” because that’s what it was. It was my way of dealing with my feelings without actually realising it.

I went through a process almost, which I am probably still in.

I am not the typical blogger. it wasn’t all sunny and nice. No pictures of a beautiful home or well turned out children, but that’s not what it is about for me.

What started out as a totally selfish outlet, has become something people read and relate to. Whether it be, peeing in public or falling asleep during a meeting, other people are going through those things too.

Whether you have multiple sclerosis or not, people have been there.

Over the years I have received many emails from many people with MS, thanking me for reminding them they are not alone, through the pain, stubbornness and sheer exhaustion.

They are the people I write for.

Because although this is my space and its not always about MS, there is always someone like me looking for an answer. Or even a notion that they are not alone.

But this last week I have achieved something amazing. I have made the final three for the online category of the MS Society awards.

I cannot tell you how much this means to me.

And its something like this that will keep me writing. Maybe not as often right now, but certainly, I will keep going.

I am so excited to be venturing to London in October, and even if I don’t win, just being there is incredible enough.

So thank you. To everyone who has read my blog, tweeted me, emailed me and supported me. Even on the worst days.

 

I Have MS And I Am Too Expensive

I am facing a new problem.

Housing.

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.

Moving on.

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.

We Are Hosts Of The #Zelicious #Zelfs Twitter Party

On the 30th of July we will be hosting the Zelicious Zelfs twitter party from 2pm to 4pm!Zelfs MPU Blogger Button copy We Are Hosts Of The #Zelicious #Zelfs Twitter Party

Myself and a number of Pop’s friends will be coming together to take part in games galore.

Zelfs really do taker me back to my childhood, they remind me of certain toys gone by, so when the chance came to be a host at the party we jumped at the chance.

On Wednesday the 30th I will have children galore running round, party games, food a plenty and we will of course be on twitter during the party tweeting away. So remember to follow @MSmummyoftwo and UKMumsTV on twitter and join in with the hashtag #zelicious and #zelfs to see the party in full swing and take part in the games online to maybe even win yourself some fabulous prizes!

Now, I feel like I might need to style my hair in a zelicious way, you have to look the part of course!

See you on the 30th!

Its Been A While

So I guess its been a while.

Since I really blogged for me that is.

I do still need it and enjoy it, but my life has been consumed by, well, life?

I might be hiding from emails and I could probably give you a million excuses, but thats all they would be. Excuses.

In my defense however I have started my own online magazine. Erisea. Its been a labour of love, something that started with a friendship between me and Erika. We kind of stumbled into this amazing friendship, the kind where you are scarily alike in the whipping your hair back and forth sense. Where you can hug for the first time and it feel like the millionth time.

Those friendships are hard to find.

So we built Erisea, we launched this week and I can safely say I feel like I am drowning and if I hear the word editorial once more today, I might cry. 

Nevertheless, this is just the start.

I hope to refrain from neglecting my blogs. I miss them, I miss my space to let out my feelings.

My more recently feelings are far more humorous as of late. Something I am particularly proud of.

I guess I really am more than a disease.

So, I have work to do, so I am signing out. Please bear with me. I will be back, however do come over to the magazine, would be nice to see you there icon smile Its Been A While

 

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