I had lost a bit of inspiration…
As my MS has been stable, I have felt lost re my blogging. When I started this blog page, I envisaged myself blogging every week about the ‘ups and downs of life with MS’. Well in a way it did start off like that, and now as MS seems to be behaving itself I’m finding it all a bit, uninspiring.
My inner speech is telling me to hold back, casting doubt on this journey…
I remember one Neurologist appointment I had in the early days. I was asking about treatment. I was intrigued by different treatments out there and wanted to try HSCT (Haematopoietic stem cell transplantation). My Neuro told me my RRMS was a mild form and Plegridy was a good choice of DMD for me – as long as I found Plegridy to be a good choice, was working for me, and I was able to deal with the side effects etc. I agreed with him as Plegridy was (and still is) doing what it’s supposed to). But, I admitted to him I was scared for the future and I didn’t want my MS to progress and was willing to try anything (hence the HSCT). Again, he repeated himself whilst looking at my brain MRI image and its scattered white lesions. To me there were alot of lesions, and again I told him I would do anything to halt the progression of my MS. He then showed me a brain MRI image which he uses as reference for his patients. This brain MRI scan was full of lesions. Full. I had never seen so many lesions. I couldn’t hold back, I started to cry. He asked my why I was upset and I told him. I told him how cruel all this is. How MS is such an unfair disease to so many people. How could I be sitting here with a mild form of MS, when there are individuals out there with a more advanced form of MS?.
He told me how showing such emotion and empathy was understandable. He reminded me I also had to remember that this is my journey. MS affects every one differently, but I should never forget that this is my MS journey.
I have never forgotten, but to this day I still find it hard. Hard to be so positive for my own future when there are so many suffering. I show empathy. I show compassion. I offer support. I can’t relate to a lot, but I can so imagine. I am not complacent about my own journey. I know too well how unpredictable this disease is, but I need to keep moving forward.
Moving forward and being positive for my future, no matter how many times I get knocked down – which over the years have been more times than I wish to remember.
This is my MS journey.