Whilst laying in an intensive care room, my mind dancing upon clouds of morphine, I had heard faint whispers from doctors and nurses. They spoke of something, something that would haunt me for the rest of my life and keep me awake through many a long night.
I had been asked while in the ICU if I was experiencing any pain where my leg had been. To my shame I had never heard of this side effect of amputation and so, thought it was a very strange thing to ask. I shrugged off the suggestion and said that I couldn’t feel a thing but then again, with all the drugs that were being pumped into me I couldn’t feel much of anything.
It seemed like an amusing notion that I could still feel, let alone feel PAIN, in a part of my body that had, in the spirit of Mr Presley, left the building.
As the days slipped by my dosage of painkillers was slowly decreased. Not the most enjoyable process, it being a bit trial and error. Sometimes the reduction would be a little optimistic resulting in PAIN!
Thankfully I had been gifted a magic button meaning that when things got very bad I could press it and get an extra shot of Morphine, up to a certain amount of course.
In the midst of all this, I began to feel some strange twinges in my toes, the toes that had, at this point, not been connected to my body for well over a week.
Twinges became itching and eventually itching became severe pain, like electric shocks running through my knee, down to my toes and then back up again.
Realising that this pain must have been that to which the doctors had been referring, I thought it might be a good idea to let them know that I no longer thought their questions put to me a few days earlier were “weird and a little insensitive”.
To settle the pain, they quickly gave me some powerful pills, which were actually epilepsy medication, however they also had the fortunate side effect of blocking the signals which were causing the pain.
All In My Head
How on earth could I still feel such horrific pain in a limb that wasn’t there anymore. It wasn’t enough to just lose the leg, I had to have a constant painful reminder of its absence.
Believe that these, plus many other thoughts, dominated my mind in the aftermath of the phantom first revealing itself.
It is our brains way of warning us that there is danger. A defence mechanism against further damage, using signals sent from the brain along our nervous system to find a problem.
Once the medicine had kicked in (pardon the pun) and I could focus again, it was explained to me that this phantom limb pain was a result of the brain not being able to make sense of the fact that it wasn’t receiving feedback from nerves that were no longer there. It was assuming that there must be a problem and registers that as pain.
This is why people with missing limbs can still feel them, all the signals from everywhere in our bodies are processed in the brain and being the amazing organ that it is, when there is a problem with those signals it adjusts.
This means that, as I write this now and in fact every moment of every day, I can still feel my leg. I can bend my knee and wiggle my toes and if my eyes are closed, it’s as if they are all still with me.
Unfortunately, the more I focus on it the worse it gets, and it goes from just the sensation that my leg is there, to something more severe. I’m only halfway through this post and have already been forced to stop several times, as even a brief nod in it’s direction can allow the Phantom to strike.
People have in the past intimated to me their disbelief in the existence of phantom pain and some of the arguments I have heard against it’s existence would have been pretty convincing had I not been standing there wishing very much that I could reach down and vigorously scratch away at my vacant space..
The general line of argument though goes something like, “ahh, it’s not real pain, it’s all in your head”.
Well, yes, it is in my head.
As is any pain, that anybody feels, in any part of their body.
There would be, I was told, an upside to this sensation.
I was given a very high dosage of this epilepsy medication right from the start, the reason being that if they hit it hard and fast, while the pain wouldn’t go away completely, it would significantly reduce the frequency and severity of future flare ups.
One day, while speaking with my physiotherapist, she informed me that once the pain was under control and I was just left with the sensation of my leg being there, it would make using a prosthetic much more intuitive. While at this point it was still a good few months until I would even be flicking through the prosthetic leg catalogue, it was good to begin the conversation about what exactly was going to happen when it came my rehabilitation. I had done very little other than just lie in bed up to this point and was needing some assurance that I would, at some point, walk again.
I still have phantom limb sensation and as it turned out, my physiotherapist was right. Though I do plan to delve more into the process of beginning to walk again in the future of this blog, I will say now that being able to feel where my foot would be does help with walking on my prosthesis.
The pain has also settled down a lot, after over a year of being on a very high dose of the epilepsy drugs, which caused some unpleasant side effects (a story for a later post) I was weaned off and they had done their job. The pain is no longer constantly with me but does spike up occasionally. I have been sat with friends and suddenly sworn out loud, much to their shock, as a bolt of electricity has shot through my leg.
I also have a very strange issue where if somebody touches me and I’m not expecting it, I will get the same sharp pain. I’m guessing this is something to do with my brain trying to find where I’m being touched and getting confused when it gets to the leg.
Of course, as I mentioned earlier, bringing my attention to it also causes pain. Kind of like when you have a cut, if you focus your attention on it, it begins to hurt more. (You’re welcome everyone with a small injury who is reading this right now).
- Just because you’ve never heard of it doesn’t mean it’s not right/real.
When the doctor told me about phantom pain I fully believed that it was a ridiculous notion. Feeling something that wasn’t there, what a load of nonsense.
Of course, before that time there was no reason why I should have known about it. I didn’t personally know anyone with a missing limb and whenever I watched the Paralympic athletes on TV they didn’t really feel the need to talk about it.
So, I had gone about my life totally unaware of it and then, when an actual doctor who performed amputations told me about it, I doubted him.
Fortunately, other than a few days of pain, my ignorance didn’t cost me much.
- Try not to feel disappointed when you can’t bring yourself to do the things you love.
These are crazy times and feeling down or completely unmotivated is not just okay, it’s to be expected.
I’m not saying it’s a good idea to wallow in that feeling forever but don’t beat yourself up over a few lost days, weeks or even months. Just remember, you’ll get back to it, even if one day you have to force yourself out of bed and say “that’s enough”, it will happen.
- You’ll be amazed at the things that can lift your spirits.
I cried at the last episode of “The Mandalorian”. Then I cheered because I realised that I’ve fallen back in love with “Star Wars”.
That doesn’t mean much in the grand scheme of life but in a time where I’ve had quite a few down days, it made me incredibly happy.
Also, little Grogu was enough to entice my lovely wife to watch something “Star Wars” related so for that, I will be forever thankful.
Obligatory Blog Quote
“Of course it is happening inside your head, … ,but why on earth should that mean that it is not real?”Albus Dumbledore
Stay safe folks and be excellent to each other.