“Be confident with the the guardianship you have over your own life”
A few nights ago, when I got out of bed to go to the bathroom, my right leg wouldn’t take my weight. It kept collapsing underneath me. For some reason the quad had suddenly, very suddenly, no warning, gone on vacation.
This wasn’t the first time. It happened about six months ago too. Except then it was much, much worse. My right knee went into withdrawal reflex every time I tried to put my foot on the ground. That time I had to go into hospital for a few days because I needed 24/7 care. Nobody could understand what had happened or could predict what might happen next. I worked hard at staying calm and balancing the fear of permanent immobility with strategies for enjoying the things I’d still be able to do, as well as doing everything I could to restore function to my right leg.
While ACC helped me prepare for the physical changes by getting me equipment I would need to live independently, I quietly and determinedly set about identifying any stretches or movement that reduced the withdrawal reflex. Slowly but surely I worked on straightening my leg while I was sitting or lying on the hospital bed. Then I worked on keeping my leg straight while I tried to stand on it, even if only for a few seconds. Over a couple of days I went from standing on my leg for a few seconds while taking most of my weight on a walking frame, to walking fifty metres using crutches. I stretched my calf muscles, hamstrings, adductors, hip flexors, any muscle group that might be triggering the withdrawal reflex, any muscle group that might be weakening my quad.
Over the last six months I have devoted hours every day to stretches, strengthening exercises and reclaiming the walking stamina and endurance I had previously. I am determined to walk and maintain my mobility but I also have to acknowledge that my mobility could be compromised at any unpredictable moment. I sought counselling to help me manage this. I was offered a gem “Be confident with the guardianship you have over your own life”
Again and again, I return to this mantra. But do I really have the emotional fortitude to do this on my own? I know that on a practical level, there are things that others can do for me or with me. Like it or not, emotionally I’m on my own. This is my emotional journey. It’s difficult for others to understand the fear I have of losing whatever mobility I have gained. The difference between having to use a wheelchair and choosing to use a wheelchair is infinite.
Perhaps the greatest help others can offer is to understand how my physical decline impacts on my ability to get around outside my own home. Knowing that I can unexpectedly and without warning lose my mobility makes staying with or visiting other people really challenging Few people I know have toilets that are accessible to wheelchairs, or have entrances without steps, or beds that I can transfer from into a wheelchair, assuming I have the wheelchair with me (if I lose my mobility while I’m using crutches, I can crawl, that’s it. I need someone to lift me onto the toilet, the bed …) So I need to have a strategy in place to deal with this, and people around me who understand the complexities of personal cares – toileting especially.
However, I’m not completely on my own. Initially I thought that I had to provide all the answers for logistical issues. I’ve learned that I can raise an issue or a risk, discuss it with others and work together. I don’t have to solve on my own all the problems that come with a sudden loss of mobility.
Maintaining social networks becomes more difficult with physical barriers, time spent preventing contractures and pressure sores, and managing pain and spasm from reduced movement, and fatigue. It can be hard maintaining friendships and relationships. I’m not withdrawing, I’m struggling, so others will have to carry more of the work required to keep friendships going. Understand that I’ll be more reactive, rather than proactive.
Quality of life can be reduced. One of my greatest pleasures is independently wheeling down to the local beach then walking down the ramp and onto the sand. The beach is not accessible by wheelchair. I’m still working on that, but for now, I take every opportunity to get outside. I may seem unwilling to join in activities, understand that I am prioritising the things that make my heart sing, especially the things that I may not be able to do with less mobility.
So what happened when my mobility was again threatened?
It was a distressing and frightening experience.
But having beaten it once, and having learnt from that experience I patiently went to work. I had everything to gain and nothing to lose if I spent the rest of the night getting movement back.
It took about an hour and a half of progressive stretching to reach a point where I could stand on my right leg. I used a walking frame to take most of my weight then gradually increased the pressure on my right leg. I asked my husband to massage the quad, trying to stimulate the nerves to that crucial muscle. I sat from time to time so I could recruit my quad in a seated position then again tried to stimulate it in standing. I stretched my long calf muscle, another trick I’ve learned is when I stretch that muscle the quad will try to work. I did some squats to work the quad. Then I walked barefoot round the house using the walking frame. As my quad became more reliable I switched to crutches. Then I put on my shoes to walk with the Odstock.
By far the hardest thing to do though, was to go back to bed – if I slept would my leg again fail me when I woke? Eventually I reasoned that I couldn’t stand for the rest of my life, doh! At some point you just have to surrender to common sense.
Same logic when it came to getting out of bed… I wanted to stay in there in case there was a repeat of what happened at midnight. Stupid right? Just as I’m not going to spend the rest of my life standing, I’m not going to spend the rest of my life in bed.
So I tell myself, be happy, don’t worry; I can’t stop the physical decline, I can’t predict it, but I have guardianship over my own life.