In The Arms Of My Mother.

This week started with my usual 28 day infusion. I went in happy, albeit cold, but happy nonetheless.

But I left reeling. I sat for hours with tears in my eyes, silent.

I left feeling like all my hard work was for nothing. I left my confidence behind, because I was so, so damn confident that I was fine. Because I had done everything that had been asked of me. 

I had been positive, living and loving every minute of life. But now I am finding it so hard to get that positivity back. To push myself to ignore it.

Later I went to my Mums. Where I ran straight into her arms and sobbed. She held me fo ages. Because being in the arms of my Mother, is all I wanted.

I spent the rest of the week escaping in London with Steph. I was away from reality, free to be someone else. But by the end it, the tears and fear had once again caught up with me. They found me. 

And I cried.

I cried down the phone to Hubby and I cried on poor Steph.

So in the end, I spent far too much of this week crying. 

I spent even more time asking myself why. Why me? Why now? Why that?

Granted I had been forgetting. Silly things like conversations, questions and often mid sentence. 

But I didn’t expect to be told I have inflamation in the part of my brain that is my memory.

I don’t want to forget. Anything. I want to see, feel, hear and remeber every one of those things, because everyone else can.

Now I have to take a million more photos, write everything down and take in that extra second of everything. As to try and remember. Try and hold on to every memory I have or will have.

Now I await to hear from my referal for more tests.

More scans.

So I will use my blog for my memories, of past and present. Then they will be there forever, I might not be able to imprint it on my mind forever, but I will leave the imprint on the internet.

Where I can find it.

You Think You’ve Got Problems!?

I often hear people moaning about things, trivial things that don’t really need a second thought and the one thing that goes through my mind is “you think you’ve got problems?!” Yeh, I would judge me too. But honestly, I can only wish I had something so trivial to worry about.

I mean, take today for example. I went for my Tysabri infusion. A few months ago I had one infusion and came off it, for many reasons. One of which is the fact I was simply not ready. So today for me was a big deal, I took the leap into the unknown.

I even vomited on the way.

Anyway, this drug is fairly new, no real knowledge of its affects 10 years + down the line. Granted there is only like a 15% risk of something awful like PML happening, its a brain disease, the deadly kind. But someone has to be in that 15% right? That is always my worry, someone has and will be the minority.

What if its me?

I have tried another treatment, daily injections burn like a bitch and put me  in a place I never want to be again, so really, the Tysabri was the way to go. It is my best chance of a real life.

Today after the vomit and extra stabbing for blood, Hubby and me were talking. He named me the ‘iron lady’ as through the faintness of it all, he could see and hear me nearly giving up and going home. But I didn’t. See I don’t cannulate well, I have like, no veins? So it takes some real digging to find one, I don’t know if you have ever had someone digging around under your skin trying to find a rubbery vein, but its a real stomach turner.

He asked me if I was okay, I told him I was and that I was sat here, clutching a vomit bowl for my children and him. Not really for me. I know this will be my best chance to enjoy the life I can have.

I have to do this every four weeks. If you want to tell me being cannulated gets easier, please don’t. I have had it done 20+ times over the last 12 months. It seems to just get worse.

But now that I am ready for this treatment, I will take it. For them.

So for me, I worry and moan about this and all the other shit this disease has to throw at me. Its not trivial. Its my life, its my families life. Its our future. I will never beat multiple sclerosis, but I can put up some sort of a fight.

So next time you moan about the lightbulbs not being bright enough or the fact bold has gone up by £1.50, and you see me scowling at you. Its because I am wishing they were my worries and bug bears.