It has been nearly 2 months since my last post around Christmas time. Things since then have been a mixed bag.
I have had a lot of time with my family and that has been amazing, we’ve gotten out and done a lot of things and made the best of the weather. The weather however has also taken its toll. the heat is so incredibly draining, every day is becoming more of a struggle which is even more frustrating when I am so used to being someone who loves summer and all the opportunities it brings. My symptoms are slowly and progressively getting worse as the summer progresses, each day I wake up after a hot nights sleep more tired than I was when I lay down. Some days it takes every single piece of mental fortitude I have just to get myself out of bed in the morning.
It is really starting to take a mental toll on me and those around me. I get more and more frustrated with the situation and being tired and ultimately end up snapping at those around me for the smallest of things, I know I am doing it sometimes but my foggy brain just doesn’t react fast enough to stop it. My limp is starting to return and I am now dropping just about everything I pick up… and did I mention the brain fog.. I am genuinely at the point where I have to stop tasks and walk away to clear my head a bit and refocus on the task at hand.
All in all this is what is leading me to what comes next, I am seeing more and more of the people I have met through various forums going for HSCT treatment and the results all over the world are looking promising. So, I have started the application process for Singapore and its looking promising that I could be accepted. That in itself has its own mental challenges as it completely alters the trajectory of my whole families plans for the next 2 – 3 years as everything else has to pretty much go on hold.. Having to subject my family to that is a real mind muddler for me, it is so hard to justify all their sacrifices just for my own health.. so I am trying to work through all that in my mind right now.
Until I have all the info from the Neurologist and in-turn Singapore nothing is set in concrete yet, but once I know, assuming I get approved, it’ll be time to make that final call on if I can mental handle doing this to all those around me, and then if we decide to go ahead, start fundraising like crazy, the treatment will cost in the vicinity of $200,000 once all expenses are accounted for. The big thing I have to keep remembering is the MS mantra ‘time is brain’, the longer I leave it the more potentially irreversible damage it can do to my brain, and in turn body
I watched a BBC doco today which had some good info in it about the treatment and some good outcomes from it, if anyone is interested in how it all goes:
I am working on tying all my post areas together with web page, facebook etc. If you’d like to subscribe to email updates, please fill in the form below. Things will likely get more regular now.