10 years since my first dose

Hello there,

Long time no speak eh?!

I realised a week or so back that it was 10 years since my first dose of Alemtuzumab so I thought it was a good opportunity for an update.

So what's happened in the last decade? Well lots obviously but the reason you are here is to find out how my MS behaved. 

And I can tell you, for me, the best thing that happened between 14th November 2011 until 14th November 2021 is that my MS is STILL in hibernation. Yep! That's right. No new symptoms. No new worries. No new nothing.

This video from 22nd October 2011 explains in a much better way than I can about Alemtuzumab

Okay so I may not be completely truthful when I say I have had no MS type things happen at all in the last 10 years, but the things that have happened have been re-emergences of old symptoms due to a variety of things such as getting a cold.

When I feel slightly under the weather, my MS comes back just to pinch me into remembering it may be sleeping but it is still there. 

My vision is the first thing I notice. The eye which was affected by optic neuritis all those years ago, gets very blurry and my glasses don't feel strong enough to be able to see the telly (an absolute disaster for me to be honest...!). My hands ache and my grip is affected. And the worst is I get completely and utterly exhausted. Yep, the 14 step staircase does suddenly feel like a trek up Mount Kilimanjaro.

It's not just getting a bug that brings back these annoying symptoms either - stress has been a major trigger.  There have been pretty regular occassions over the last decade where I have been forced to take time off work as a result. Usually at really inopportune times too like at the start of or during a big project.

Although not my eye (mine has more wrinkles) when I get feel under the weather, my vision gets blurry (Pic: https://www.pexels.com/photo/extreme-close-up-of-woman-eye-256380/)

And that has been the worst. There is nothing that can bring on self loathing as when your body lets you (and other people) down. You feel a crushing sense of dread, helplessness, and overall disappointment that you are being forced to stop. It feels like a weakness in every sense of the word. You feel like you are letting people down... that it will be percieved as a negative by others... that you are failing. That's when it has been challenging to not slip into a depressive mode. 

Thankfully, I have been able to find my inner pragmatism when needed and have dragged myself out of any self pity that threatens to envelop me. 

In June this year I decided to take myself out of the situation that was causing the most stress and I left my job of nearly 20 years.

It's been strange. And getting used to the change has taken a lot longer than I thought it would. It was a job I had 100% loved with a huge amount of responsiblity and pressure. It was all encompassing. Hugely rewarding but equally hugely stressful.

My family life was suffering because I was giving my all to the job. Weekends were usually spent with me lying supine on the sofa in an attempt to recoup my energy and trying to disguise to my work colleagues how much the toll of the stress was having on my MS health. 

So enough was enough. 

An opportunity presented itself and I decided to take it. And although I am now in a world where I am not really sure what my next move is going to be - I am so much happier and more importantly healthier. 

Less of the lesions

Up until last year I was having annual MRI scans on my brain but due to an exhilarating lack of any MS activity in the form of any new lesions, it seems these are no longer needed with the obvious caveat that if any new symptoms appear then of course a trip to the noisy white coffin will have to be repeated.

I have so much to be thankful about. I honestly thought the Alemtuzumab treatment would give me a few years at best before the MS came back to bite me on my (growing) behind. I never imagined in my wildest thoughts that a full 10 years on and I am still feeling the benefits.

How long things will last only time will tell. But for me, this treatment has been simply magnificent. 

Sian x

  

Five years on...

Hello!
It's been a while since I posted anything but as I have reached the five year anniversary of the first treatment of Alemtuzumab I thought I'd let you know how I am getting on.
And in one word - GREAT!
Really great actually.
In the five years since the treatment, I can confidently say that I have had zero relapses. Zilch, nada, none.
Don't get me wrong, I do get occasional bouts of extreme fatigue where I have to take time off work, hole up on the sofa and just sleep (in fact I'm currently having one this week) but it happens maybe two or three times a year. And I can cope with that - and thankfully have a very understanding employer.
But in terms of the other stuff, you know, the blurred vision, the muscle spasms, the tingles, the hand clawing, the fingers that refuse to work, the limbs that feel unstable in their sockets, the sight loss, the vertigo, the failure of your body to obey instruction to move, the confidence loss, the feeling of uncertainty and hopelessness and all those things... well I've been free of them for five years.

When I first decided to go ahead with the treatment, I said to myself: "Well if it gives me five years MS free, it'll be worth it."
And it has been.
I have been given the gift of delay.
Not to delay my life you understand. No, I've been given the gift to the delay the disease. And I am so thankful.
In that time, I have lived by the mantra that one day I might not be able to do something, so while I can, I will.
So I have run a couple of long distance events, lifted weights until I felt myself about to break wind and stopped hurriedly, worked out so my heart feels like it is bursting out of my chest and my face turned a magnificent shade of crimson, danced (only on on the odd occasion mind) until the early hours fuelled by copious amounts of alcohol, I re-sat my maths GCSE for the fourth time finally achieving a B grade, and have generally done as much as I can - because I can.

My family has grown - I now have two little boys who delight and frustrate my husband and I in equal measure with their hilarious attempts of understanding this mad world we live in.
And I am still working full time in a pretty stressful environment which (most of the time) I am happy with.
So my life is busy, sometimes hard work, often with me shouting having stepped yet again into the puddle of pee that accumulates at the bottom of the toilet thanks to little boys not paying attention. But it's a good life. And I'm happy. Especially as I have been able to have this time minus any intrusion from MS.

That said, I have of course been having monthly blood tests to monitor for any side effects from Alemtuzumab and the annual MRI head scan.
But I've reached the magic five year point so no longer have to have those monthly blood tests. Amazing!
I actually paid very little attention to the whole blood test thing.
When I first started, I was handed a blue folder by one of the MS nurses in which to record the results and was also ordered to ensure I rang up to get the results. I did it. Once.
The documents inside the blue folder remain blank. I was not interested. If there was something up, they'd let me know I figured. When I look at my lack of interest and participation in filling in the results sheet I think it's probably just an act of rebellion or maybe an act of control. It was bad enough I had MS and had to have monthly blood tests, I'd be damned if I was filling in a results sheet as well! Stupid and childish I know. But because I felt so well, to have to be reminded monthly that I had MS annoyed me. And having to speak to someone about it annoyed me even more.
So I didn't speak to anyone about the results. Because I didn't want to and actually because I didn't care. Obviously I would have cared if something had been wrong - but I just knew there was nothing wrong. I felt (and still feel) so well.

And the annual MRI head scan. Well now that's been an experience. Not for the results which have consistently showed no new MS activity in my brain since the first treatment. No that's all been fine.
What I struggle with is the actual ordeal of being in that machine for three quarters of an hour, not able to move and being deafened by the banging and whirring and tick tick ticking of the actual scan.
And the itch. There's always an itch that starts usually on the back of the leg or possibly on your ear just as the scan begins that you are desperate to scratch but that robotic voice from the control room has just reminded you to stay as still as possible. All the while the itch torments you and then the sweating starts because the itch is driving you nuts but you are not allowed to move.

With every scan I have, I have to fight the rising panic which starts as soon as start thinking about it.
I have now even resorted to using the breathing techniques I learned in preparation for birth (that is a whole other story) which if nothing else calmed me down. There's nothing like a deep breath in through the nose for a count of four before a long slow breath out through the mouth to the count of eight to quell the rising fear.

And so that is that.

Five years on and things are good. MS has little impact on my life at the moment thankfully. I am very aware that could all come to an abrupt end in a heartbeat but while the disease is in hibernation I'm in no hurry to wake it.

Sian x