It’s a few days over nine months since I had my cleaned up stem cells transfused back into my blood stream. That time has passed quickly, in that I can’t quite believe that it’s nine months sine the 26th September 2018, when I was given a chance to reset the progression of my MS. In other ways, it’s passed slowly, and by that I mean slowly and peacefully. There’s been a lot of sleeping, resting in the garden or by the beach, quiet afternoons reading, fussing cats or crocheting, films; this rather than the camping, hiking, kayaking of previous years.
This weekend is gardening today, off kayaking tomorrow morning, going to a kid’s birthday party on Sunday then the footy before calling a friend in Switzerland. Basically it’s a normal weekend, followed by going back to work Monday morning, as normal. So, I’m going to look back a bit to see how my function has changed, leading up to Moscow then once I returned. I guess this is to evaluate, for myself, how my “normal” has changed in the last year.
Pre-Russia, I saw many mentions about being able to walk no more than 1km and being very heat impacted. One of my pivotal moments was staggering carrying a beer at the footy, and I noted bad handwriting by the end of the day. I can now walk further, and have more energy than before Russia: I may never regain my previous ability but the movement is definitely in the right direction.
On one of the posts, I made a commitment to walk as far as I can, 2 years post treatment. Well I am already walking further than before, my walk of 4.6km is now repeatable albeit with lots of breaks, so I am very happy to maintain that commitment. There is a comment about taking walking for granted, how true that is and in a way, difficult to explain to people when I am fine over very short distances so the impairment is invisible.
I wrote about friendship, through travel and walking and wondered if AHSCT would bring the same friendships. Definitely, there are a few people I will stay in touch wth forever, and will visit when possible. Travelling to Europe, America, NZ is now fine.
Just to mark the actual date, a couple of photographs from that day;
I’ve been re-reading my posts from the days I was in isolation, I had forgotten how much I enjoyed that peaceful, calm time. That’s one appreciation this journey has given me, of siting peacefully and listening to music, reading, playing with cats, just quietly being. I was always so busy ‘doing’ that there was little time to ‘be’.
At 6 months post, I made some commitments about going forward;
- to get back to the MSGym; I am working my way through another program, and having chosen a slightly easier program which is shorter each day, am managing to sustain it. These programs definitely improve my walking coordination and balance if I maintain them.
- keep work in proportion and not get stressed; bit of a fail here, still a work in progress. However, I am managing four days a week, often with half a day at home but still working.
- lose some weight; our scales have broken so I don’t know, however I’d say yes. I’m doing an intermittent fasting program, where I don’t eat for around 16 hours two or three times a week. This allows my body to process the food, digest everything, and have a bit of a break. Seems to be working, and I’m happy with the principle of eating reasonable amounts of good food, not too often.
- meditate; I find the MSGym a peaceful way to end the day, but I’m not sure if that counts. So I’d have to give that a fail.
That makes my focus for the next three months pretty clear, meditation and managing work stress, while maintaining the exercise. We have a holiday in August, driving up to Monkey Mia, Ningaloo and Karajini, so maintaining movement will be part of the planning. There will be lots of walking, hence the focus on my MSGym, I am unsure which of the gorges I will manage but I’ll be happy just to be there.
Conclusions at 9 months ? I don’t really have any conclusions, I’ve used various analogies in this blog, the main one being the journey however also a jigsaw when I don’t have the picture, and a narrative that I can write but don’t know the ending to.
I am still very much on that journey, writing that narrative, doing that jigsaw puzzle … and all three of the in a very literal sense sometimes.