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

 

Dear Mr Cameron.

Dear Mr Cameron,

It’s been a long time coming, this letter to you.

The voting slips came in the post and I didn’t really know what to do.

Which box should I tick?

Do I close my eyes and just do it quick?

Or do I talk it through and deliberate for a time?

See Mr Cameron the decision is important to me,

My vote counts and I feel its about time you stand up and listen to the people who you just don’t see.

I understand there is no quick fix,

But did you have to pull the most vulnerable into this mix?

See it’s people like me Mr Cameron who are suffering the most.

Because its people like us who are least likely to boast.

A free car, a blue badge and undeserved money?

When in reality that is simply just not funny.

Mr Cameron Sir, have you ever been unable to work?

Have you sobbed so hard at something that does nothing but lurk?

Have you been told there is no cure and slowly your body will break down and fail?

That no matter how hard you try or scream or cry or shout you just can’t cope with something of such a massive scale.

Have you ever been told, Mr Cameron, that they just don’t know why?

Why you are where you are and how you can do nothing but cry.

Cry at the unknown life you and your family will face.

Cry that one day you will be a shell of who you are with your inevitable fall from grace.

Of course Mr Cameron I am talking about the changes to the benefits for the disabled.

The people who are just not physically abled,

To fill in your forms and attend the interviews to prove I am what I say I am.

Are you surprised in the lack of reapplications from the people of whom you don’t give a damn.

The people who struggle to get out of bed,

The people with that monster lurking in their head,

We already struggle to function each and every day

So why Mr Cameron do you make this the way?

Where we exhaust ourselves worrying about that money,

When our lives will forever be far from sunny.

Can’t you help us try and be all we can?

And do it from the moment this all began.

Because Mr Cameron we can’t take anymore.

We need help to survive, to get through the damn door.

So Mr Cameron If you want my vote,

Help the disabled, believe what I wrote.

Put yourself in my shoes and try and understand,

This is not at all what we all had planned.

Make the services and benefits fully accessible,

Because any more of this fight would be reprehensible.

 

%d bloggers like this: