Six months seems like a milestone. Six months since my stem cell transfusion, six months where I feel that I have a future. The treatment stops progression, and the ongoing improvements I am seeing are an incredible bonus. Sitting on the plane coming back from Melbourne, I started considering the next 6 months and what they might bring
I’ve deliberately use photographs that I’ve posted before, to capture moments in time that are
- past, but I never want to forget, or
- past, I thought lost forever to MS but now aspire to revisit.
Firstly, the time since Moscow, in phases;
The first three months of rest and recuperation
The first three month I really was sleeping, eating and doing very gentle rehabilitation exercises. I have to remember that I could only just walk to the beach, watch the sea, then walk back to the car. Driving took a few weeks of supervised, very short drives before I was happy to drive into the city by myself. I saw adults, but no children for a good few weeks, and avoided any illness or sources of infection.
Towards the end of this period, I started going into work occasionally, and was doing MSGym sessions or Tai Chill every day. The Fremantle cafes saw a lot of me, and the beach became a favoured spot to relax. A highlight, and a marker I guess, was driving down to Walpole with friends, going for very short paddles and walks, and sitting around a campfire with a glass of red wine.
The next three months, back to work and living a real life
I started work after New Year, slowly increasing the time at work. Nowhere near full time, as I found that my fatigue levels still needed a lot of management. The exercises took a hit, I started seeing an exercise physiotherapist and his exercises have become my inescapable routine but the MSGym became a couple of times a week. I started swimming and kayaking, cinema visits and Arts Festival shows became a semi-regular occurrence. A week of rest and exercise in Tasmania provided a fantastic peaceful time to re-connect with good friends.
This period, it felt like I was beginning to get my life back. Work, social, exercise; all coming together within a very limited framework due to physical energy limitations. A spell of neutropenia and having to return to a previous stage of rest, care and immune-compromised health was a useful reminder of the roller coaster.
The recent trip to Melbourne has been fantastic, and if this is where my MS and health stabilises, I am truly blessed.
The next 6 months
I started this post to think through my goals for the next six months. The last six months have progressed so incredibly well, but there are lessons to take forward;
- Keep work in proportion. I am so bad at getting stressed about work, and that is just not necessary or helpful. Work my allowed hours, but remember it’s better to be at work reliably, than do too much then collapse and have to stay at home resting for a few days.
- Get back to the MSGym exercises and swimming. OK the reinstated neutropenia stopped the swimming for a while, but time to get back to gentle exercise.
- Lose 2kg. It’s not a lot, but will help me fit into my current favourite jeans, and I like wearing nice clothes. Did I say I bought a pair of beautiful boots in Melbourne ?! Well, they were my Christmas present from Andy so thank you very much my love !
- Meditate. Keeping stress levels low is so important, and meditation has always helped me. The meditation I did in Moscow was so good for calming my mind and helping me sleep, in the middle of the night in a hospital bed.
There are no specific goals, as this journey is an unpredictable roller coaster, but these are the steps and tools that will give me the optimum chance at recovery.
My Longest Journey 