It is Day Two. To be exact, 26 days to go before I start the Lemtrada treatment. The post I shared yesterday was Day One, in case you missed it.
I am not worried about the treatment itself. I'm worried about the side effects. I'm concerned the days after are going to be the hardest. I can't worry about the treatment, as it's out of my control. I don't know how my body is going to react to this, but I can control how it feels before hand.
This morning I woke up with the most energy I have had in months. Unfortunately, this new found energy didn't go into exercise, but went in to work. Not such a bad thing. But the new healthy life style didn't really get a look in today - oops. Maybe dinner time. I have managed to get some steps in. Although it wasn't through walking, just the usual dancing around the living room to an upbeat playlist which gets my day (and my brain) going. A bit of 90s dance going in the background as I write this. A little bit of C&C Music Factory for all those 90s lovers...
Being in control and knowing what will happen next is something I am sure most people can relate to. I am one of those planners. I like to know what's happening, and like to be able to plan ahead. Letting things "happen" is not something I like. Although I like the idea of letting it all happen, if I had to actually do it, I would probably fall apart. I'm an organiser, a planner. And not knowing how I am going to be affected by this medication is messing with my inner control freak. I don't like it. But I can't control it. What I can control is how I react to it mentally and be able to do as much as I can to avoid getting sick before and afterwards. The reaction to the drug is going to have to go with the flow... my inner control freak just screamed in agony with me admitting this!
I watched a #Melrobbins clip yesterday about being able to solve problems. This also goes towards the ideas of control. Change what you can, and don't stress about the ones you can't. Wise words, but who listens to wise words? I'm trying to. I really am. But when things go to custard, how often to we remind ourselves of these wise words. Whether by Mel or the Dalai Lama. Can I get you all to remind me of these when I'm suffering from the steroid crash and lack of energy levels? Say wise words and I'll probably throw something at you. Ha!
I can be prepared for the days of infusion. This isn't an issue. I can have things to do, food, water, my beloved Precious (the iPad) and books. It will be like my own little holiday, without the sun, sand and sea. I am currently trying to teach myself how to crochet! Trying, being the operative word in that sentence. Something additional to do when I'm sitting for hours on end in the ward at the hospital. Oh the control! I may even take my work laptop with me.
Luckily, I won't be alone in the ward, as other M.S. patients will be getting the same treatment as me in the same week. We will all be in the same boat. At least we can share stories and experiences. Having people who have been through this is an absolute life line, however. Knowing what they have gone through definitely helps. Even the advice they have shared on what to take in and what the process is a godsend. The nurses haven't been as generous sharers on this. But they have a lot of patients to look after, so I'm guessing this isn't a priority.
Tuesday, February 26, 2019
Monday, February 25, 2019
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.
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.
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