Because Holding On Is Frightening

I am sat in the midst of a relapse, wondering what I can do to make things better.

What can I do to be better?

What can I do to stay better?

Nothing.

I just have to sit and ride it out. I have to take my abundance of tablets and ride it out the best way I can.

Opting for the steroid tablets meant I didn’t need the fuss of an IV nurse for 3 days. I didn’t have to keep my line open for three days (not something I have been able to do yet)

So I sit, not making a lot of sense, thinking about the last week.

The message. The phone calls, The waiting,

The waiting is the hardest part.

I no longer have help at the end of a text message.

Thats been the worst part.

The not knowing. The in-between counties, non-sharing hospitals and doctors who, sometimes, feel like they just do it to annoy me.

The panic attack.

The depression.

The not coping.

The new plans.

The place I want to be.

The place I can’t be until I have ridden out the storm once again.

It seems like the more I strive to better myself the more it pushes back.

Sometimes, just sometimes, holding on is the hardest part.

Sometimes I just want to let go. Sometimes I don’t have the strength to push on.

Because it is exhausting.

Just living is exhausting. So adding the battle of overcoming your own bodies attempts to shut you down can feel impossible.

Scary.

But I am one of many people who live this.

We live quietly. Never quite being understood.

We are not dying of a disease.

But I know some days we wish we were.

Because that would be easier for someone to grasp. To understand.

Instead, we go on living. In a body that has no clue how to act or react.

Not knowing what pain or grief tomorrow brings.

But living anyway.

As best we know how.

Holding on at the fingertips.

Just getting by.

 

Turning My Back On Choices

I made a video recently about my current choice to stop my treatment. You can view that here. Don’t forget to SUBSCRIBE 😛

Anyway, I had my last IV, I am coming to the point I would be due back in for a top up in the coming weeks, I am coming to the point where I am comfortable with my choice.

Right now I can’t turn back without going back in to see my neuro, which is fine with me. I don’t want to go back. I don’t want to wait. I am ready now.

One of the things that is becoming far clearer to me is that the longer you go without the tysabri, the more you feel again.

The more you can feel those emotions, the more you can enjoy those emotions, the more human you feel.

I have to say I have always noticed how little I could feel or think for myself. Without struggling to understand or deal with the feelings in a “normal” way.

I am not overwhelmed by feeling happy. I can laugh until I pee and I can really enjoy the laughter.

Something that I have been thinking about more and more is having a break from any treatment. So I would push it back until after the Christmas season. So I can feel the season. So I can enjoy the whole thing. The sounds and the smells. The kids, the fun and all the love of my family.

I want to feel again.

I want to start the new treatment, but I want to spend a few months feeling and living in every moment. Before I feel like I am just going through the motions because my body is full of a drug that has so much control.

I can’t explain it. I don’t understand it, but I know that I can feel it.

I understand that I will be back in that wheelchair. That I will need help to walk, but I know full well I will feel every single moment. 

I guess I want to live side by side with my MS for a while. Before going back into a new treatment full of new feelings.

 

 

Why I Stopped Writing

This blog has been pretty quiet for some time.

As far as personal posts go.

And I don’t have any real explanations for this because I just don’t know.

I lost my voice. For so many reasons.

I wanted to shut the computer and forget I had put my life out online.

I went to memory classes to try and get my voice back.

Nothing.

I didn’t feel it, I couldn’t feel it. 

As far as my MS goes, it’s a lot slower with my Tysabri. But it is still progressing more. Slowly taking little things without me even noticing.

I felt like no one cared what I had to say.

Who am I anyway?

Who am I so sit and type out my life online?

I’m boring.

Then I worried about my content.

I have multiple sclerosis. And I am not shy about it. I want to talk about it.

Not for sympathy.

Not for people to feel sorry for me, I hate that.

But for the people like me, who feel alone. Who feel like they are abnormal.

Scared.

Frustrated.

Fearful.

I started this to help people like me. People who have a future but have no idea how it will pan out.

We can’t make plans, we can’t have dreams.

Both of these are normally dashed at the last minute.

So we live day to day.

We sit quietly and get on with the pain. Desperate to know we are not alone. 

I started this to make more people aware of MS and what it’s like to live a life with a degenerative disease.

It might not be glamorous.

It’s certainly not easy, but normal people, people like you, need to know.

You might have a friend with MS who is perfectly fine. And that is fabulous. But for most that is not reality.

We might tell you we are fine. But that is because we don’t want to bore you with todays list of symptoms.

Or a new fear that has resurfaced.

We just carry on.

I stopped writing through fear.

Fear of the disease.

Fear of people thinking I want sympathy.

Fear of people judging me

Fear of people just not caring.

Fear of waking up tomorrow having not made the most of yesterday.

But I can’t live in fear anymore.

I want to write.

I want to vlog.

I want to document our lives so my kids can read back and see I loved them. See what I was going through when I was singing nursery rhymes or playing tag.

To give them strength and hope.

I need to stand up and stop living in fear. I need to live for the now.

So if I should wake up tomorrow with the loss of my legs or arms, I can know I lived the hell out of the life I was given.

So there you have it…

miss

Why Duncan Smith Is A Massive Pillock

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I woke up to the above picture in a Multiple Sclerosis group I am part of. Needless to say, Mr “Duncan Smith” you are a complete pillock.

I will start by kindly asking you to produce this cure? Because if these conditions are no longer classed as degenerative, then there must be a cure? Right?

So please, will you kindly present the thousands of suffers with these conditions, with this cure?

No?!

I DIDN’T THINK SO.

How come someone with no real knowledge made decisions like this? Because we cost too much? Because if that’s the case sir, surely you yourself and fellow MPs cost this country a whacking great amount.

Every day, myself and people like me with multiple sclerosis and Parkinsons wake up to face another shockingly painful day.

We take the medications we need to just be able to function and we go about our day.

And as each hideously painful minute gets more painful than the last, we carry on living. Surviving.

Because we didn’t ask to live with these DEGENERATIVE conditions.

Because that’s what they are.

They don’t get any better. The pain doesn’t get any less and the diseases spend their time taking a bigger hold over us.

Because the doctors can’t stop it. And neither can you!

We take medications which put us at greater risk of developing other conditions. Just trying to find a way to feel that little bit”better”

We face a life of scans and Neuro visits. More medications and eventually we face going into the worst and final stages of our diseases.

Where we relinquish all control over our own bodies.

Where we wait and hope someone will at least find a way to slow it down.

Because these are DEGENERATIVE conditions.

And trying to reclassify this will lead to us having fight even fucking harder to just live day to day. And all this just to save money?

Is this what this country has come to?!

 

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.