I do my best to give public snippets of reality, but lets face it, online is very different to knowing me in person. So I thought I would address a few of the things I do not regularly talk about online.
I rarely (if ever) talk about pain. But the reality is I am in pain a lot of the time. The way I look at it is why moan about it, it doesn’t change anything. But, it is easy for others to forget this small fact. Let’s get some perspective.
I HATE having to be a wheelchair user. I wanted to (with prosthetic) pick up life right where I left off, but the bare fact is I cannot. I have no choice but to use a chair.
Things I cannot do (that probably will never change)
- Walk very far. My limit is 800m – 1km at best. Severe pain is what restricts me from going any further. Pain caused by lack of blood flow to the muscles in my left leg (because many of the arteries were lost). It is not a pain you can push through. It is a pain that stops you in your tracks and forces you to stop and sit down till the blood flow catches up with demand.
- Run very far. (For the same reason as above)
- Cycle very far (for the same reason as above) I have inconsistently succeeded it mentally forcing other muscles to take over to shut off the pain. But like I say, inconsistently. So my only option therefore is stop, or pedal with just the right leg (which has a total knee replacement as it is).
- Stand for very long (again, same reason as above.)
Basically, anything that involves using my legs, is either limited or a no go, because the more I demand of the muscles, the more pain I suffer.
Does this stop me? No. I am not afraid of pain. I am not making things worse (they really couldn’t t be much worse in what remains of my left leg). But it does restrict me in every aspect of my life. I have to use the chair more than I want to.
I will never be able to be a competitive paratriathlete because the para category they have put me in requires me to run the whole 5km upright on two feet. Fact is there is no way I could even walk 5km, never mind run it.
For a similar reason I probably wont ever be a competitive paracyclist. Because again I have been put in a category that means I must use a traditional bike and use both legs.
If I walk too far, I am in pain. If I stand too long, same. Plus I also start getting phantom pain in my left not foot. If I cycle, same happens as walking. Sometimes I am forced to stop, get off and take the bike leg off to alleviate pain.
If I avoided things that caused me pain, I would never use my legs again. To me that is not an option.
Yes, I have been dealt a shit hand, but all I can do is make the best of it.
So, consider what exercise I currently do, and you might have a different perspective completely on what I am able to achieve.
One thing you might not know – pain is not a factor that is considered in para classification. God only knows why.
I have been diagnosed with persistent depressive disorder and PTSD. Hardly surprising considering what I have been through.
Just doing a ‘normal’ day takes more physical and metal effort that it does for able bodied people.
Working out what I am planning to do, working out the physical aspects, geography, is there enough seats, what mobility equipment do I need, etc etc etc
The inevitable stress of social and physical barriers to accessing the world as a disabled person. It often feels like I am constantly armed for battle, which quite frankly, is exhausting.
Depression is debilitating. It isn’t just feeling a bit sad. It is seriously misunderstood, as is PTSD. Sometimes the energy consumed by these two things is more overwhelming than the physical disability.
The constant trying to look normal, act normal, do normal things, is all really hard. Some days I do it well and others I really struggle with it. My go to reaction is to isolate myself, because social interactions are exhausting when you constantly have to put a front up of “I am ok”. Let’s face it, who wants to hear me moaning all day long… and what would it achieve anyway?
So, when you think (or say to me) wow, you are so positive, you achieve so much, you are so inspirational… bla bla bla…. Just consider for a moment the immense physical and emotional energy it is taking me just to get myself to the start line each day.
I am not looking for sympathy. I am just painting some perspective on my life as it is at the moment, and the things I have been able to achieve.
I can’t is not in my vocabulary. It should not be in yours either.