I have had issues brewing beneath the surface for a few months now, that I have not talked all that much about, but have been quietly quite concerned about. So much so, I have had quite a battle to get back into the system and have the legs looked at again. I now have the answer (which does not surprise me but also does not please me.) I feel like I have said this so many times now that the way I see myself living my future seems to change every few weeks. This is the biggest blow since losing the leg. It has made me re-evaluate my entire plan moving forward.
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The issue (and the science)
When the diagnosis of a blocked artery was delayed (by 10 months) by the original medical error, the hold up caused irreparable damage to my lower leg. This means that there is no femoral artery and no popliteal artery in my left leg. That means no arterial flow to what is left to my leg below the knee. My body has built a few very small collateral veins that provide just enough flow to the remainder of my lower leg to make it still viable. But… this is not enough blood flow to the remainder of the calf and shin muscles for them to work properly.
The problems I still have in daily life
I can only walk around 800m before the lack of blood flow to my left lower leg causes such severe pain I cannot walk any further and have to sit down. Despite working really hard to try and improve this by walking as much as possible, this has not improved and my max remains 800m – 1km and has for a few moths now. The same thing happens when I cycle, although due to the slightly different action, I get around 6km before the pain starts. The only way I can continue cycling is to stop using the left leg for a bit to allow the very limited blood flow to catch up.
What can be done about this?
Absolutely nothing. Yep, you read that right. There is nothing they can surgically do to improve the blood flow into the left lower leg. Not only that, there are no meds that I can take to help with the pain either. It is simply something I will have to live with for the rest of my life.
The vascular flow in the left leg has not worsened. It is the best they could do at the time, and I have as much of my leg as they were able to save.
No, I cannot just ‘work through the pain’. Claudication pain has to be experienced to be appreciated. It comes on gradually as the muscular demand for oxygenated blood increases and the blood flow decreases: it reaches a point where it is so severe that I literally I cannot take another single step and have too sit down and wait for it to recover. This does not ‘make things any worse’ and cannot cause any more damage than already exists. It just is what it is. It is incredibly unlikely to improve. I probably have all the collaterals that the body is prepared to make. Continuing to try walking will just cause pain, rather than improvement. I am at a dead end.
Amputating my leg higher up will not help. The devastating loss of a functioning knee far outweighs any minor (pain free) advantages I may gain – if any – which are not guaranteed anyway.
What does this mean for me?
To be completely blunt, I am stuck with this shit, it will not improve, I will always have pain, there are no tablets I can take to make it go away and will never be able to walk that far, for the rest of my life.
How do I feel about this?
Pretty pissed off to be honest. This changes the whole way I perceive my life from hereon in. The wheelchair I have on order that was only for emergencies is likely to be my permanent mode of transport from now on if I have to walk more than a block or so. Those strolls in the bush I used to love just took on a whole new complexion. I will always have to be aware of how far it is, if I can sit and rest, make sure I am physically able to get back, how much extra time it will take me, the fact that I am probably always going to need crutches when I cannot use a wheelchair. Maybe I need to start thinking of a way to pimp my crutches…. ?
Swimming… continues to be unaffected by any of my leg dramas and something I have always consistently been able to do despite everything. It just became a wee bit more important than it already was.
Cycling… is a challenge and always will be. But I am not going to let it beat me that easily. I am currently working on trying to work out a way to pedal with my left leg with most of the loading going through the glute and ham string instead of the knee and calf. My right leg is also having to pick up a little bit more work to help out (poor old knee replacement!) By concentrating hard on cycling this way I managed to ride 12km outside this afternoon without any calf pain. Its very slow going. But I still believe it can be done.
Running… well I still have not discounted that yet but I might be like that Spanish athlete in the Paralympic triathlon who was running with both a blade and a set of crutches. Running, but not as I knew it. I won’t know until I try. I just hope I get the opportunity to try.
And then there are the permanent structural changes that will be needed at my house… but lets not talk about that.
How does this affect my para-classification?
At this stage, I don’t know. I am waiting for the documentation to come from the surgeon so I can send it to Paralympics NZ to ask them to re-assess my classification. I am currently PTS4 which means moderately impaired, but because I am not classified as a wheelchair athlete (spinal cord injury or major loss of function in my legs), I cannot use a racing chair for the run. I have to be on two feet. So at this moment in time I am not going to worry about this till I have more information.
What are my sporting goals now?
My goal always was to actually complete Challenge Wanaka as an individual. It is obvious now due to paratriathlon rules that this is a rather unfeasible goal. It is very unlikely that I would be able to complete a half marathon on two feet, even if I did have the help of crutches. I might still be able to do the aquabike (3km swim and 100km bike) but I have been forced to reassess everything and think of some more realistic goals.
- I have entered some medium distance open water races later this year / early next year in the summer.
- I am currently focusing on trying to teach myself a way of cycling (slightly differently) that prevents the claudication pain from overtaking me and forcing me to stop. This is my major focus right now and I know it will be slow progress.
- I have stopped my regular walking exercise. There is absolutely no point continuing with this. It is completely unfeasible as a fitness option and all it does is cause me unbearable pain. So I am cycling more instead.
- I am waiting for a decision from ACC on a running blade. If I get the opportunity me, my crutches and the blade will hit the pavements to try and figure out a way of doing that also.
- Once I have all these ducks in a row, I will try a short sprint triathlon and see how the leg feels about that. Then I will take it from there (if I get to there!)
But, aren’t I upset about all this? How can I remain so positive?
Trust me, when I got the news from the vascular scan I knew exactly what that meant for me moving forward. I was not surprised. Devastated, but not surprised.
But… what is the point of being down in the dumps? I cannot change this. I cannot improve it. In fact there is quite simply fuck all I can do about it.
I have wasted 18 months of my life already on the dramas associated with this leg. Life is short. WAAAAAY too short. So, what I need to do now, is get my hands on the wheelchair, teach my arms their new role and get on with my life in the best ways that I can.
Here are some quotes to finish off. Each and every one of these have a place in my story right now.
6 thoughts on “Re-modelling my life: it aint over yet. (This is massive!)”
Melanie you have the right attitude to go forward…and yes it’s very hard to live with constant pain plus everything else …you should be very proud of yourself 🥰
Thank you Thelma. I sure am!
Who is the Spanish athlete in the Paralympic triathlon who was running with both a blade and a set of crutches? I couldn’t find out using Google.
Thank you so much for sharing your journey with us.
She is called Rakel Mateo Uriate. 🙂
Thank you. She’s a good role model.
She sure is! She gives me hope!