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.

 

Dark, Down And Disorientated.

Midweek and it seems like my uplifted days are slowly coming to an end. I am starting to feel down again, not something I really wanted to feel again for a while. 

After a rather strange week so far, I am tired and a little “meh”

Have not really got much interest for anything, not housework, shopping or playing with the girls.

I know, hideous.

Some might think its a wonderful idea to take a plethora of vitamins and go for a run, well to you I say, GET LOST! Before telling me how to live, see how it really feels before you throw some vitamin-exorcisey bollocks at me. 

Right now I want to cry and feel sorry for myself, on the sofa, in my own home. Because I can. 

Have been feeling average MS wise for a few weeks, which for someone like me, is good, I swear. Now I am starting to tire of doing things and all I want to do is watch TV and drink tea.

Not much has changed for these feelings to arise, apart from being busy and stressed, so I am starting to wonder if my Copaxone has anything to do with it, I am giving it the benefit of the doubt before I decide to stop.

Its only been a few weeks so I will soldier on, with the nasty lumps and vile stinging.

However I will admit that stopping treatments altogether has crossed my mind. Its something I have been secretly discussing with my nurse, I have asked all the questions and I have all the facts, so I will take my time and make an informed choice.

After all, its my body and my life and part of me is tired already of pumping myself full of drugs on a daily basis. Its depressing-er. 

So lovely people, until tomorrow!

Things That Make Me Go Awwww…

Do you know what I hate? I hate looking back, yes I know ‘what a horrible thing to say, however do I live with myself?’  Well before you gallop away, jump off your high horse, pull up a bale and listen.

I hate looking back over memories because they remind me of what I cannot have. Although I am still able to have children, it would do nothing but disable me more and it would not be fair on me or the family.

No accident happening here I’m afraid, its double bagging  belts and braces all the way 😛

You see looking back just makes me miss those early days, those little newborn grunts and endless cuddles. Watching them sleep whilst the sun comes up, I won’t get that again. 

Of course, like any other honest parent, some days I wonder whose idea it was to have children in the first place?! But then I also have those days when I would love to have another.

So I have decided to share a few photos, photos that make me smile but also make me want what I can’t have, curse my womanly wiles! 

Yup that is my boob!!
Yup that is my boob!!

family photo
us together

Story time!
Story time!

Aaawwww you would not see the last one now, there would be claws and screaming!

So, I will now always be a baby free zone! 

Is There Anyone Out There?!

Today was my appointment with my Neurologist.

He was running an hour late, which in crazy mind land is fine, we know there worth so we wait.Had it of been at the GP’s I would have been first to complain.

Funny that.

I went to discuss my treatment options, in hope I could make a real informed decision  I was hoping t leave with a clear head and with the right choice made. Never have expectations where MS is concerned. 

I have left feeling more confused when I went in.

I have the chance to see my amazing brain. I also had the chance of seeing my old and new lesions. It freaks me out to think how long they were there, doing there damage without me knowing.

I have three options. Try the weekly injection, an interferon based drug which has no risks but some fluey type side effects.

Next its copaxone, a different daily injection, which is not part of the interferon family however poses no real health risks.

Last is stick to tysabri, the monthly infusion. Yes it works, however it comes with health risks of its own. PML which could essentially kill you, someone has the be the minority, right? Next is the unknown no-one knows the effects further than five years, no-one knows if it has a shelf life. Then its the kidney infection side effects, I hate those. Last is the cannula bit. I have really poor veins, from years of prodding and poking.

All these things along with the girls and me mentally not being ready to face up to the fact I have to fight. I have to live with whatever choice I make, I have to live with the what ifs. 

Also each treatment opens a door. The interferon, should it not work would mean I would be eligible for the new tablet. The other two both lead to tysabri.

I am confused and frustrated with my confusion. I am lost and I don’t know where to turn. At the end of the day its my body and I hate the fact I have to pump it full of drugs for a semi normal life.

That’s another option in itself, nothing. Let it be,see what happens.

Whatever road I take it will change me, I will have to acknowledge the fact I have multiple sclerosis. 

Any comments welcome.

Failure, The Story Of My Life

I tried not to push myself too far however I seem to have failed, story of my life…

I was just sat on the toilet, getting the old panty liner in place, yes, what a lovely over sharing moment, I started to shake, I started to shake so much I really struggled to get the damn thing off that backing crap.

Minutes before this (not whilst perched on the toilet) Pops brought me a sticker to take the back off, it took me approx 6 minutes to steady the shaking and to finally manage to get it off.

I feel like crying.

My back is hurting and my legs ache so bad.

I keep getting steroid sweats at night, I wake up soaked and convinced I have pissed myself.

I have not.

Its the small things I am noticing that are really starting to get to me. To grate on my emotions.

The worst part is the fact it is completely beyond my control, I can’t even open a bottle of calpol without a fight.

Tomorrow I intend to rest, Tuesday is fast approaching and I have no idea what’s coming next.

Fun times…