11: The Phantom Menace

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.

The Phantom.

Zap

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.

PAIN.
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.

Get it? The Phantom Menace.
I know, I’m hilarious.

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.

Looking Ahead

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.

Never Alone

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).

The Most Wonderful Time

Wasn’t Christmas weird this year?

That is perhaps the most obvious statement anyone could have made but I still wanted to say it. For those of us in the United Kingdom, we were informed one week before the big day that the relaxing of the rules, which would have allowed families to mix over the few days around Christmas, was not going to happen.

Many of us did not get to spend the day with our families and although there may be some relieved that they didn’t need to listen to the same old stories from boring Uncle Keith, there were a lot of us who it hit very hard.
We were unable to spend time with my sisters family the way we had planned and as those of you who’ve been reading my blog know, my wife is in Nepal at the minute so our first Christmas as a married couple didn’t exactly go how we might have hoped. (Though that’s more to do with the virus in general than the Christmas decision).

However, it wasn’t all bad.
In the weeks leading up to the big day, “The Mandalorian” gave us quite possibly the best “Star Wars” moment since the 80s, a couple singing to raise money for foodbanks got Christmas number 1 (for the third year running) and then on new years day, we did the impossible… We made it out of 2020 without the world ending.

My sister and me watching the ending of “The Mandalorian”.

Of course, Christmas still came and went and you know what, it was a very nice day. I spent it here with my parents and little sister and we all enjoyed ourselves. I hope that despite the disruption, most people out there can say the same.

Absent Poster

I would love to tell you that I’ve been so busy working on new and exciting projects that I just haven’t had the time to write, edit and share this post until now. I wish I could say go and check out the YouTube channel I’ve been planning on setting up for a few months, or hey, I’m about to get my first book published.

However, despite the fact that I have been putting some time into these projects, the truth of why I haven’t posted in so long is that I, like most people, am struggling with the situation at the minute.

Every time I have sat down to write this over the last two months I’ve spent a couple of hours staring at the laptop and if I’m lucky, at the end of that I will have added one whole new sentence.
It’s been a real struggle to build up the motivation to do things, even things like this which I really want to do. I’ve been enjoying writing this blog so much and every week that goes past where I don’t post something really bothers me.

Hopefully, finishing this post and the feeling that I get whenever I share one will reignite the flame kick me back into action.
That being said, it isn’t the end of the world if it doesn’t, it simply means that I cannot promise that I will be keeping to my weekly schedule every time.

But I do promise to try.

Thank you for reading, stay safe and be excellent to each other.

The Wisdom

  • 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

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7 thoughts on “11: The Phantom Menace

  1. Fantastic blog as always David. Really hope you get the opportunity to publish your blogs more widely soon. They are so inspiring and will help so many people – including me!

    Liked by 1 person

    1. Hi Louise,

      Thank you very much for your comment. I’m really glad to hear that you feel that way about my posts, to be told that you are inspired by reading my story is uplifting and inspires me to keep it up.

      I am having a blast writing and sharing these posts and the response I have been getting is wonderful.

      Again, thank you very much.

      Liked by 1 person

  2. I love reading your blog! but this one was a little hard to get thru, not because the Phantoms are in your head, but because they haunt me the same way. My amputation was an AK back in 2006, but a revision in 2013 left a bunch of the nerves that had originally been buried in soft tissue exposed again. I understand Hard and Fast! since 2013 I have severe “Episodes” and 3 of those have landed me back into a hospital emergency room yelling and grunting and twitching uncontrollably, only to be treated by the staff as some sort of drug seeker. Usually, I can get ahead of these with some simple aspirin or Advil but the hard and fast ones don’t give those time to work, and when they are coming every 15 to 30 seconds it makes for a long 6 to 12 hours of lightning strikes! The only remedy at this point that I have found is what I refer to as a “Hard Reset”. My brain needs to shut down and reboot, and the only way to do that is to fall asleep, and we both know that is next to impossible without some medication that will do it for us. I have been known to sleep thru multiple days and when I wake up, groggy and disoriented, I have no idea what day it is.

    This happened again 2 weeks ago! They scare me, and being a former Marine, not much scares me. They also scare everyone around me, my wife, my adult children, and the very few friends that have seen one of these “Episodes”. I think I feel worse for them!

    Thanks for letting me unload on your blog, I love your writing because so much of it hits so close to home even though I am on the other side of the world. I feel like your writing is the closest thing to actually explaining what our day to day is actually like, and you do it with a great sense of humor and outlook on the future.

    When you become famous from your future Youtube channel and Book and decide to tour the United States I would be honored to meet you in person!

    RoboBrutal.

    Liked by 1 person

    1. Right, I have to start by saying that this comment is incredible and I got a little emotional towards the end there.

      I am so happy to hear that reading my blog has been a positive experience for you, even if this latest one was a bit difficult (sorry about that). It does prove the point, and I’m sure you’ll agree, that even just thinking about it can cause problems for us.

      It really sounds like you have had a hard time of it. The second surgery must have been a tough thing to go through, especially if it left you with more severe phantom pain. I hope that there were some positives to come out it?

      I am fortunate enough to say that I’ve not had it so bad that it’s put me in the emergency room, though I have had pain that I thought might leave me there it doesn’t tend to last very long these days.
      However, I can imagine just how difficult it must be to convince people that you need the medication, especially when even the staff are doubting it.

      It’s good that you have found a way to deal with it with your “Hard Reset” technique (trust me I know about the sleeping with phantom pain challenge), thought I do hope that eventually you manage to find or are provided with an alternative which doesn’t involve sleeping through whole days.

      I do completely understand the worry about family members and close friends having to deal with what goes on. I tend to find that most people like us don’t let a lot of it show outside a very select group but those in that group have to see some pretty unpleasant things.

      I’m glad you feel comfortable to share this and get it off your chest here, that in itself makes starting this whole thing up completely worth it.

      What you said about my writing hitting close to home and being a good explanation of our day to day is the bit that got me emotional reading this. I really appreciate you saying that, it keeps me inspired to write knowing that people like yourself feel that way about my blog.

      I would really like to share your comment on my social media if you would be happy for me to do that?

      I’ll be sure to let you know the moment my first book/YouTube tour is booked. 😉

      Thank you again for such a great response to my post.

      HS

      Liked by 1 person

      1. Yes, you can use any or all of my comments.

        The interesting part about always being able to feel your foot and leg, even though my brain thinks it knows where it is, does not mean that is where it actually is in space. I have felt my foot hit the ground in front of me only to find that the prosthetic foot got hung up on something behind me as I fall to the ground!

        Liked by 2 people

      2. Thank you very much, I will share it on my Facebook and Instagram pages.

        That is a really good point and I know exactly what you mean. While the feeling does give a sense of where the leg should be, that doesn’t always mean the prosthesis is in the position you think (getting caught on wires is always a fun one). Like yourself, there have been many times when I have hit the deck before even knowing I was tripping because of this.

        I think by now we must be experts at falling in a professional way.

        Liked by 1 person

  3. “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.”
    Ouch son. Just ouch.
    Love you. X

    Liked by 2 people

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