The MS Society Awards 2014

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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.

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.

 

The Amitriptyline Hangover

So roll back a few months, I was not sleeping. I was exhausted from even trying to sleep, but just completely unable to switch off.

Once I was asleep I would sleep, it was just the whole getting to sleep part I was struggling with.

I think I ended up using nytol for around 4 weeks, I think given how tired I was, I would have tried anthrax if I thought it would send me off to sleep. 

Knowing what I know about drugs, I knew becoming dependant on said antihistamine was probably not the best option.

So when the time came to see the man in charge of, well, me?  The first thing out of my mouth was “please put me to sleep” I informed him about my longing to nip into the anesthetics suite when I was on my way to my infusions, just for a quick nap. 

He We laughed.

But that didn’t last long because I WAS KNACKERED.

So he gave me Amitriptyline. I knew a little about the drug and he said it would help me drift of into a normal sleep.

THANK GOD.

So although Amitriptyline is not really used for sleep, reports show people who do use it, have a real sleep.

So, the first night I took it. Two hours later I was asleep. 

The whole night, I slept. 

But the next day I had to wake up for some appointment and my did I feel like death. 

I literally felt like I had been dragged through a hedge backwards twice, thrown out of a tree and had someone shouting in my ear ALL NIGHT LONG.

I had been warned about the after effects at the pharmacy. How I would feel if I woke too soon.

I felt like satan had licked my brain. It was vile.

I had an Amitriptyline hangover. The worst kind of hangover ever.

And the only way to get rid of this hangover was to sleep. Sleep was the key.

So thats what I did!

Now, instead of feeling like I had danced with the devil, I wake up feeling like I had a real sleep. Kind of like a normal person does.

I need to make sure I get between 12-14 hours, but thats fine. As long as I can wake up ready to face my version of life, I’m good.

Thank god for modern medicine!

Recovery Is Imminent!

So last week was fun. Spent most of it sleeping in bed, with a drip in my arm. Saying that, it did stay in for the whole three days, which was a big shocker to both me and the nurse!

The disappointment and drudgery of life is starting to go. I think I am finally taking control and getting back on track.

I guess when I was going through the rough patch I should have considered a relapse. It never really occurred to me, I guess the tysabri helps loads, but does not make me invincible. 

Probably need to remind myself of that from time to time :/

I guess thats the thing with a lifelong condition. Other people get to fully recover, be cured. But people like me don’t. We just get to have a little bit of normal before falling into a Multiple Sclerosis state.

Then we’re right back to where we started.

During my relapses I tend to always go into a little bit of a lost state. I sit and doubt myself repeatedly. Worry I will never again find my kind of normal.

But I do.

I just need reminding and reassurance from time to time.

So I guess that has been my last few weeks, and contributes to my continual silence.

A silence I hope to break, eventually. Right?!