I have been home from Moscow one month now, and am now sitting outside with a mug of tea, the cats and a lovely Fremantle spring day. Generally I’m feeling good, the weather here in Perth is lovely, with the days heating up and the evenings still cool although that is changing rapidly and it’ll be aircon time soon.
I am struggling with the conflict between
- the desire to get out and be active, at this beautiful time of year, when I have the time and the inclination, and
- the fatigue which comes to bite me if I do too much, and doing too much is very easy at the moment. A coffee with a friend, or a short walk, or even a trip into Perth city, are all manageable and even a couple of activities in the same day, but sofa time will be required afterwards.
So I am spending a lot of time in beautiful locations, and enjoying the view while staying quiet and peaceful.
I love this image, and it’s one I need to take to heart. My challenge of pacing myself means that it will be so necessary to balance the euphoria of my relatively easy time in Moscow and easy ride on the rollercoaster of recovery with a planned and paced recovery and return to normal life.
For those interested, my ( very mild) post -AHST side effects are
- fatigue, and needing lots of rest
- broken sleep, I don’t think I’ve slept close to a full night since I got back
- my period hasn’t yet come back, although I’m really not complaining about that one !
- right side, which was always the impacted side, is still impacted with foot drop, a peg leg swinging hip, weak right arm and inability to easily raise my arm high – all of these getting worse with heat or tiredness. My right side is generally worse than it was before Moscow, but that is normal and an expected side effect of the treatment. It can take 3 months or more to regain the pre-AHSCT status, and symptomatic improvement if it occurs years of rehab.
- dry skin
- bone pain particularly on the right side
The danger of over-doing activities is a backward slide and recovery taking much longer, also if I were to weaken my already impacted immune system there would be danger of infections and all the trauma that could cause.
On a more optimistic note, my success today was going into work ( with mask on, being careful) to meet a couple of people, and I managed to walk up then back down these stairs at Woodside. The way down was pretty ugly to watch, and I used the hand rails, but this is more than I could have achieved in the months before Moscow when my right side was deteriorating rapidly.
I’m seeing this small improvement as a reassuring and incredibly gratifying indicator that there may be some symptomatic improvements in store.