Day one... a patient's diary.

It's been a while. Actually, it's been longer than a while. And whilst I may have been in touch with some of you, not all of you know what's going on. And for my newer contacts, it's not been a while at all. 

In 27 days, 13 hours and 44 minutes, I will be checking in to Charing Cross hospital, here in London as a day patient. I will do this every day for five days. The reason behind this, I will be starting on a treatment for my M.S., which will hopefully, give me a new lease on life. 

Back in March 2017, I had a really bad relapse after moving house. Again, after moving house in May last year (2018) I had another one. Yes, you got it, I'm never moving again! (I know this idea makes my UK friends happy, and my antipodean ones, not so happy). Similar issues, with my legs having lost pretty much all motivation to feel. I could still move them, but what I had was dead leg. You know the feeling you get when you sit on them too long, and you've lost all feeling to them. Yeah, that's the one... in both legs. The second relapse has been the longest, and in all honesty, I still haven't quite recovered. So my Neurologist, in all his wisdom, suggested a new treatment. 

So it comes down to this. Monday 25 March, I will be going to get this new treatment. But I want to document everything which happens leading up to, during and the effects afterwards. There are others out there who have done this. They have even recorded videos of what they have gone through. I'm more of a writer. Although if it comes down to not having any energy to write at some stage, then I'll dictate to the husband and he can type it up. 

The treatment: Lemtrada. It used to be called Campath, and is a treatment used for Leukemia. On the first morning, as I understand it, I will be tested for any infections. If there's any infections, I will be treated with anti-biotics. Fingers crossed this doesn't happen. Then, it will be on to the infusion of steroids! After this, it's on to the good stuff, which is supposed to be killing off my immune system, via an infusion. 

Because M.S. is an auto-immune disease, my immune system attacks itself. The idea behind Lemtrada is it will reduce my immune system and hope it bounces back without it wanting to attack itself again and again. 

Time: The initial treatment is for five days. Then for three days the following year. Fingers, eyes, legs and everything else crossed, this will be enough and my self-attacking immune system slows right down on the inside front!  If not, there is a third year to look forward to, if this doesn't work. 

I have been told by the nurses at the hospital and all the people on the Facebook group I am in, I need to start on the listeria diet. Although the timeline for this one is a little hazy. So I've started already. Basically, the same as the 'pregnancy' diet to avoid any chance of listeria infection. Trying to stay away from anyone with a cold, flu or any other person/place where airborne viruses are rampant. Unfortunately, work won't quite allow that, so I have loaded up on Anti-bacterial hand wash, wipes and any thing else I can get my now, very clean hands on.  I'm wiping down the keyboard and desk now. Handles, phones and anything else which may have been infected. Overkill? Quite possibly. And after a couple of days of this, I know I'm going to be totally over it. Do I have to give up wine?? 

So Day One is nearly over. I haven't been very good. I should be eating well and staying active. Am sure Day Two will be better.