In amongst the angst of the past weeks, there has still been physical improvement for me. I realise that in my funk I have failed to celebrate these milestones. I would like to share a few with you, so you know I am still improving despite my lagging emotional state.
When I manage to take myself out into the Alice winter days (beautiful compared to much of the country just now), I am now able to walk 2.5 kms. The first time I reached this distance, I felt as though I might just die, thankfully that feeling passed. Walking this distance has become much easier with repeated effort and a friend walking with me last week commented on my speed, saying it was much faster than he anticipated. It’s always nice to get positive feedback. I have been tracking my exercise progress with help of an app on my phone and it really helps to see how far and in what time I complete my walks. Highly recommend using one, if you don’t already.
While still having headaches every day I have a plan with my GP to slowly come off the morphine and then the other pain medicines, once the headaches reduce more in their intensity. The cocktail of drugs I am on currently is likely causing some side effects like reduced motivation, lethargy, mood issues, food cravings etc., etc. All the things likely to undermine recovery but without them I would be in debilitation pain, unable to do much of anything, thus I persist with them.
My friends, whom visited this past week, helped so much around the house and provided much needed laughs and company and baked goods (thanks M). In addition to fixing a chair for me, Mr. Engineer R, also attended to my poor old, battered Mirror Box. When I had the stroke in 2007, a Psychologist friend read about Mirror Box therapy now being used to help stroke survivors regain hand function. He proceeded to build me one using a beer carton and it worked a treat. It didn’t travel well in our move here but I didn’t know how to revive it, but my friend did. He gave it a complete makeover so it is useable again. By leaving it sitting on the dining room table, it is easy now for me to just sit and use it a little each day. This will help settle the finger curling I have and improve my fine motor skills in the left hand. www.mirrorboxtherapy.com
In my desperation to find motivation to do my rehab exercises, I scheduled time with my physio to develop a program using their clinical Pilates gym. I kept the appointment (an achievement in itself) and was put through my new program. I am deceptively weak.
At first glance, I look fit and healthy – this is a mirage. My physio was surprised at just how weak my left side is but was equally pleased to see that not once in the 45 mins we worked together did I say, “I can’t”. It was great to find that when someone sets an exercise for me and at the first attempt, I cannot perform it, I can still dig deep, focus, breath, and try again and again and again. It was monstrously challenging and my balance so bad that during one exercise, I fell off the equipment. Luckily for me, my physio used to play rugby and caught me around the hips, in something resembling a tackle, before I could hit the ground.
I decided to work with the physio rather than on my own because he is very interested in rehab and this way, I have to attend a physio-supervised class once a week and am accountable to someone. Next week we are working on my pool program – let’s hope he knows how rescue someone from drowning.
Next up is my eye which is now showing fantastic improvement. A number of weeks ago I was doing the exercises given me by the Guide Dog mob when it occurred to me, that rather than just doing the exercises three times a day, and wearing the patch the rest of the time, wouldn’t it be better to actually give my eyes time working together? So I began leaving my eye patch off in the mornings, slowly increasing the time as my eye dictated. At first, the swelling around my eye was a restriction as it pushes my eyelid further down than usual meaning my distance vision was still double, so I only left my patch off when I was sitting down and not moving about constantly changing the field of view. This worked well and I was able to start at 30 mins without the patch and gradually increase it as tolerated. My eye was always the guide in this experiment as it had a definite limit, at which point it would ache badly, my vision would begin to double again and I experienced shooting pains behind and around the eye – time for the patch to go back on.
I continued with this approach over weeks and gradually began making my breakfast without the patch, walking from room to room, slowly getting the eye used to changing fields. It was a slow start but I persisted, convinced this was the way to ‘get off the patch’. I have continued to do this, experimenting with different activities and was able to add in an hour at night, watching TV. I felt nauseas constantly in the first few weeks and there were definitely days when the nausea had me re-patching before any eye pain.
I gradually increased the number of hours each day when I could go without the patch and my eye was getting stronger and stronger. The swelling at the side of my head (below the temple) also finally began to reduce.
Last Sunday, I decided I’d had enough of wearing the patch and went my first full day without it. The only time I experienced difficulty was the following day, in a taxi returning from a physio appointment. I could see out the windscreen and found myself becoming extremely nauseas. I realised I was having difficulty looking into the distance and spent the rest of the trip looking at my hands in my lap, to avoid vomiting in the taxi. I refuse to do that sober.
Long story but I have now gone three and a half days without the patch and largely, am managing fine. The eye still fatigues in the evening and if I stay up too late, my vision begins to deteriorate but this, I am sure, will also improve with time. Friday morning will see me attending my eye review with the hospital Ophthalmologist. I will walk in there without the patch; hopefully, I won’t walk into anything or throw up.