Friday, 7 February 2014

MS And Tysabri Latest - Musings. Annoying, Painful Musings.

I wrote this on the ferry to my infusion this past Tuesday

"I don't know what my MS is playing at lately. 

My symptoms are going nuts, along with old ones flaring up and even new ones making an appearance. It's making life very tricky for me. New symptoms sometimes means new lesions on the brain but I'm forgetting that thought, telling myself that they were all there before and just deciding to flare up now. 
There's no doubt about it, my MS is getting worse. Much worse. My Doctors and nurses are all aware and are all nodding at Secondary Progressive. But the fact that I have new symptoms and I'm getting much worse brings my Tysabri treatment into question - Whether it's working or not. 
I've had to be very careful what I share with them in fear that they might stop my treatment, as it's not licensed in the UK to treat Secondary Progressive MS. I chatted with one of the nurses about my fears at my last infusion and she told me that they look at it on a case by case basis and I could still be allowed the treatment. All MS gets worse eventually, but it's about slowing it down. Some people thrive on Tysabri and improve, never relapsing again. 
There's no doubt it's working for me. Before I started this treatment I was relapsing over and over. Now after being on it a year I have only relapsed twice. One of which wasn't even a 'true' relapse as it was triggered by infection, the other was at the start of my treatment. 
I've given it a lot of thought lately, perhaps it's time to be honest and not just with my Doctors but with myself too. I kid myself every day about it, telling myself I'm fine. 
But it's only so long I can pretend that I don't need my crutches every other day. 
People close to me have even noticed that I'm getting worse. My heart races in my throat and I'm exhausted suddenly just sat down doing nothing. I dread to think of having one of these episodes when I'm walking around in public as I will fall (not that falling everywhere isn't exactly uncommon) and stress putting even more strain on my heart. Working out? Jesus if I had this while on an elliptical I'd probably end up in a wheelchair. I'm stumbling all over the place, yesterday I even fell backwards twice when I was just standing still folding washing. 
It's starting to get a bit much. Maybe I should tell the truth. I can't keep blaming all of this on stress."

 Well I did it. I told them everything. What my body was doing, how I felt, and all of my fears. My nurse as always was brilliant, putting me completely at ease but we agreed that it's all got to be forwarded to my drug consultant. She is the treatment boss, who decides yes or no.
I feel so much better for sharing it and getting it all off of my chest. 
Some people do go through bad patches of MS and then a couple of years pass and they get a lot better. It's all about phases. And it is still early days on Tysabri, I've been on it a whole year now! The bottom line of it all is that this treatment is doing something positive for me. In my heart I do feel like I'm just in a low phase. Problem is, if there is a hiccup I could stay in the low phase and plummet. 

But we don't think about these things. We just keep going. It's ok to paint on a smile every now and then. The most important thing is to listen to your body, share what you can, accept help and keep positive. Our bodies are breaking apart. Life for us is like the sea, crashing into crumbling cliffs, ripping them down. Our cliffs may fall into the sea, but our souls still stand. 

So let your soul do the smiling for a change :)

Blessings x

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