Tomorrow, it will be two years since my first round of Lemtrada. In seven days, it will be a year since my second round.
Lemtrada was the undoing for me. Being diagnosed with MS? That caused emotional trauma that I needed to work through, but physically, I was no different the day I didn’t know I had MS to the day that I did.
I was still going to the gym. I was still lifting ridiculously heavy weight. Until Lemtrada. It took the life out of me. All of a sudden, I actually felt like I had MS, in spite of having no relapse. It’s a curious thing. I’ve not had a relapse in all the time that I’ve had MS, but I feel worse, and feel as though I’ve deteriorated considerably over the last two years.
When I agreed to Lemtrada to treat MS, I knew I was in for a rough couple of years. I knew life was going to take a pretty tough turn, but I hoped the pay off would be controlling my MS.
So far, both MRI scans I’ve had since the treatment, have shown no evidence of disease activity which is the very best I could hope for and means that the trade off of a crap couple of years has so far been worth it.
And my now, two years on since that first round, I finally have a new lease of life. It could be lockdown. Not commuting everyday and generally just slowing down a bit is incredible for my fatigue levels, my pain levels and just my soul in general. I’m using my garage gym at least three times a week.
Life, finally feels good.
Don’t get me wrong – yesterday was still a bad day. My eyes weren’t working and I knew I must have looked terrible when Dave told me to go to bed and he’d make me tea 🤣
But I slept, and today is another day and in general, I’m feeling a lot better on the good days. The bad ones feel less frequent.
Over the last forty day, I’ve completed 26, 26km bike rides. This ended up being a fundraising thing inspired by the 2.6 challenge. The cancellation of the London Marathon meant that so many charities have lost much needed funds. So I took to my bike over the course of 40 days (I would have loved to have done it on consequtive days – but ya know…I’ve got MS….). I’ve managed to raise an incredible £800 for Wigan MS Therapy Centre. I mean, I would have been happy if I’d raised £50! Hell, I was just happy to complete it!
I had a little cry when I finished it. The enormity of what I’d taken on finally hit me. When you get diagnosed with MS, you think this kind of thing is taken away forever. I used to be really active. I danced so much. I lifted heavy weights. And Lemtrada had put a stop to that. But I did it. I actually did it and it’s whilst the money is amazing, proving to myself that I can do it, in spite of MS is priceless.
In spite of needing a perching stool. In spite of not being able to walk that far without experiencing discomfort. I did it.
I’ve had my moments where I’ve seriously wondered whether Lemtrada was a sensible choice over the last couple of years. But it’s a two year treatment for a reason. That clock doesn’t end when you finish your second round of treatment. And I finally feel like I’m coming out the other side. Almost two years to the day.
MS Understood 