When I started out trying to find my way as a disabled person, back in 2020, the first challenge I had to overcome was self image. Looking at a photo of myself with one leg missing took a lot of getting used to.
For a long time, I hid behind trousers or long long skirts to cover it up and look ‘normal’. At one stage I trialled having an artificial leg with a skin like covering. It took a long time to find my way.
I settled on a limb cover, which made the leg leg shaped. (I hated looking at it when it was just a post) It looks like a leg, but not., if you know what I mean. I have been perfectly happy with that since.
Then we come to all the other functions I want my leg to perform. Cycling, swimming, hiking, for example. I remember the first time I was asked ‘what type of foot do you want?’my answer was ‘mmm, the one I was born with? No single artificial leg can perform all the functions a real leg would be able to do. There lies another challenge.
Walking
This is something I have worked on and also given up on more times that I can count, since the first time I stood up again on a prosthetic leg.
Claudication pain.
Until the day that a body part you were born with is no longer there, you have never had to consciously think about how you do something. So I could still point the toe that I no longer had, simply by activating the muscles like I always had, but some are not there, and the ones that are no longer need to perform that function. I have a part of my calf muscle left, wrapped around as cushioning for the amputated bone on the stump. But, that muscle no longer has an artery, so if I keep using it as if i had a foot, all i get is intense crazy pain that stops me in my tracks. What that is, in fact, is the pain of an oxygen starved muscle the gastrocnemius. There is diddly squat I can do to change that, so that pain will always be present when that muscle is activated.
It has taken me years, yes years, to consciously even start to try and change that. Even now, I am only partially successful, it still requires a lot of brain power. All my left leg really needs to do now is hinge at the knee. Try telling that to my 53 year old leg that has always had an ankle and foot on the end, till recently! Plus, whether you like it or not, the calf muscles activate when you straighten your leg, foot or no foot.
This makes walking incredibly painful.
Muscle imbalance pain
On my left side, the hip flexors and glute muscles do a lot more work on behalf of my missing lower leg. This means that left side muscle pain, plus back pain, is kinda normal when I am walking. In fact back pain is fairly common for lower limb amputees because both sides are now doing different things.
Lymphedema pain
On my right side I have a secondary lymphedema. This happened due to all the surgical interventions. My leg swells (gets congested) and is sore, the worse it is, the more sore it gets. This is not curable. I wear thick hospital grade compression garments all day every day. I also get treatment twice a week. All this does is go some way to keeping the lymphedema stable. Of course, how much I do in the way of leg exercise affects this too. If I do too much (i.e spend too long standing or walking or do it too frequently) then I get severe pain in my foot. The lymphedema has already started to restrict my ankle range of movement. My stop sign with regards to the lymphedema is when my foot gets red and cold. This is due to the congestion getting so bad it is restricting the venous return (blood cannot get back from my extremity to wards the heart). It takes around a week of complete rest and treatment to get this redness, puffiness and cold extremity feeling to subside.
When Do I need the wheelchair?
At any of the times above. So many things affect my walking and pain levels that I can never reliably think yes, I can walk x amount of kilometres. My ability to walk fluctuates massively all the time.
Para classification
So why, I ask myself, am I classified as a PTS4 in triathlon (which effectively means they expect me to cycle and run using both legs like a normal person.)
As a PTS4, I am NOT allowed to use a wheelchair at all.
As you can imagine based on the information above, I will never be able to do what they expect me to do as a PTS4 paratriathlete.
It has taken me four and a half years of research, plus trial and error, to come to this conclusion. Well, should I say to ACCEPT this conclusion. And yes, it upsets me, frustrates me, angers me. All of the above. Along side all of this I am still fighting ACC to get the support I am entitled to (and am heading into appeal / hearing number 9 at the end of this month).
Cycling
This is even more tricky and that saddens me immensely because I used to love cycling, it was at one stage my favourite sport of the 3.
Here I have the same claudication based issue that I describe above with walking. But with cycling it is even worse. We have tried all sorts of things with the bike leg, the socket, nothing has consistently worked. I now cycle on the indoor trainer pretty much exclusively because that enables me to stop when it hurts, and wait for the pain to go, then carry on.
Some times I can only manage to cycle for 10-15mins, some times I can easily cycle for 30+. Every single issue I have in cycling comes from that calf muscle and the fact that it does not have an artery. This is why I really can only safely cycle indoors and that makes me feel very sad.
I visited the limb centre last week. I have left Ryoji with some things to think about and problem solve, as we try yet another way of building a bike leg to see if we can make something – anything work.
What is happening with Challenge Wanaka?
Honestly, I really do not know. Making a plan is almost impossible with things the way they are. Until I can consistently cycle for over an hour, there is no point even entertaining the idea of an aquabike. The added problem being that it is a mid to long distance race format, not a sprint.
Will I get to the point where I can seriously think about giving it another go? Really can’t say.
Have I given up yet? No. But truthfully, I am pretty close.
