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.
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| 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
