Hospital Memories Part 6 – The Pain

Forcing myself to dig into the past, confront it head-on, ain’t been an easy thing to do.
Some horrible memories.

However, I don’t want sympathy. I want to make it clear that this is a positive post.
Horrible memories or not, this story ends in victory. A reason to have hope when it seems easier to give up.

Anybody going through something similar, a pain that piggybacks every thought and every moment, you need to believe that there can be an end to the suffering. I wouldn’t have believed you but please, take it from someone who has been pushed to the edge but been allowed to step back.

It all started about 5 months after the accident when I was continuing my recovery in hospital. I began to feel a niggling sensation across the back of my head, like pins and needles. It was diagnosed as Chronic Neuropathic Spinal Cord Injury Pain. I was told I was lucky, the tingling was a very mild symptom and it could have been extremely severe.

My luck didn’t last long. Within a couple of weeks I understood just how severe it can be.

I have tried describing this pain to so many different doctors, physicians, consultants, therapists, psychiatrists, friends and family. I still cant get it right because pain is so subjective. This is the best I can do,

Starting at the top of my neck and spreading across the back of my head, from ear to ear, my skull seemed to be as soft as a sponge and felt like someone was repeatedly stabbing at it with white hot daggers.

Nobody could touch it, I couldn’t wash my hair. I couldn’t even slide a T-shirt over my head without screaming. I was in agony almost every moment of the day, only a few seconds relief now and again. Unfortunately, a more vicious pain would come at night.

I dreaded going to bed. That’s when the pain escalated, when my resistance was completely broken.

As soon as I touched the pillow the pain would drill through my head. It felt like every individual nerve ending was being shocked, like an relentless taser gun to the back of my head. I would scream at the nurses to change the pillow again and again and again, desperately hoping that the next one would provide some relief. They all felt the same, like a bed of hot coals.

At my worst I spent 7 nights a week without sleeping, desperate for the morning and the slightly lesser pain of sitting in the chair. Throughout the entire night I would scream, top of my voice. Beg, hoping that someone could do something. Cry, tears flowing down my face, snot running from my nose (attractive!).

I admit that in the early hours of the morning I would have accepted anything for the pain to stop. Even death. Chronic pain sufferers will understand that.

I remember a nurse sitting next to my bed, holding my hand and in tears. She knew nothing could help but still, offered what she had.

Treatment seemed futile. The concoction of drugs had no impact. Not on the pain anyway. They did strip away at my spirit, my personality. I lost myself.
They tried acupuncture and other holistic methods but any contact was unbearable so they pumped more drugs into my system. I can’t blame them for that, I begged for it.

This continued for over two years. I was always in some degree of pain but the bad spells were unbearable.

After leaving hospital my family and friends offered all they could but my torture through the night was new to them. I had tried to prepare them, the nurses had tried to prepare them, but I don’t think it’s possible to prepare anyone for listening to a loved one in so much pain.

I tried to hide the agony, keep it to myself, but the pain took over when being transferred to bed. My family and friends often had to sit in another room and listen to me screaming for mercy, heartbreaking for them. My carers performing the transfer were constantly apologising, it wasn’t their fault and there was nothing they could do but they still felt responsible.

The drugs were destroying me. So much morphine, a disgusting drug. I knew I was changing, a faint shadow of myself. I only wanted to be asleep or to be alone. I didn’t even believe it was helping the pain but I was completely addicted. I lost days and I lost many friends, I was a horrible person to be around.

The only thing that gave me some respite was cannabis. Judge if you wish, I hope you are never so despairing that you would try anything in the search for comfort. Then you would maybe judge differently.

I don’t remember the pain going away, it wasn’t an instant release but it did loosen its grip over time. More than two years after those tingles started I felt strong enough to cut back on the morphine and other heavy painkillers. I gradually began finding myself. I was a different person. According to those who stuck by my side through those years, I was ‘me’ again.

Like anyone who has been or is suffering from chronic pain, I understand what agony is. I thought I did before but I was far off the mark. In the past I used the word ‘agony’ so flippantly. “My headache is agony, this cough is agony, my legs are agony after playing football”. Now I give the world the respect it deserves. Now I can truly appreciate days when I am pain free.

It was a wicked lesson but I am grateful for it. I now know that during the most desperate of times, when it seems like there is no hope and the suffering will never end, things will eventually change. I’ve been to rock bottom and spent years there but I still managed to find a way back.

I still fear pain, I still suffer from it, but now I believe finding solace is a test of endurance. We just need to cling on, by our fingertips, for long enough.

The rest of my ‘memories’ can be found here.

@Stevenceltic81

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49 Comments

  1. Steven I was afraid to hit “like”. I don’t like this at all. But you write so vividly. You write that so clearly. Even if your words don’t exactly match what you want to describe, what you describe feels horrific. I can’t imagine. I have no doubt that those who heard your screams have been forever changed as well, feeling so helpless, so lost in your pain. I admire your courage to go through that, and then relive it by writing it here. My admiration for you is turning in to something epic. (This is NOT stalker talk but genuine admiration for you and your armour clad army of family and friends.)

    Thank you Steven.

    • This post should really be dedicated to them. Not trying to sound tough or macho but I think they suffered every bit as much as I did. As I said in the post, heartbreaking for them to listen to that.

      Thank you for another glowing comment, keep this up and I might start stalking you back!!

      • It was very well dedicated to them. 🙂 I forgot to mention about the cannabis. I can’t imagine hearing my son, my brother, my father, my friend be in that kind of pain and not want to do anything I could to help. There are many more problems (in my opinion) with the chemicals the big companies are paying chemists to create to get doctors to prescribe that get people addicted. I’m glad you made it to this side of that pain. And go ahead and stalk me, I don’t think either one of us knows exactly how to do that! 😉

      • Couldn’t agree more about the big pharmaceutical companies. I’ve dabbled in just about everything & some of the most addictive drugs out there are available on prescription.

        If we are stalking each other and both bad stalkers does that just make us good friends? 🙂

      • I see so much drug addiction in my line of work. It is horrible what it is doing to families. And guess what? At least half, if not more, are prescribed drugs.

        And about that stalker thing….I like the good friends better. 🙂 It’s SO much less freaky!!!! 🙂

    • This.

  2. Hi Steven, I never knew that type of pain existed, a living nightmare!
    No judgement here, Ive used cannabis for pain relief. How are your pain levels now? x

    • To be honest, neither did I.

      I still get the pain on occasion but never as severe. The doctors don’t know what triggers it or what stops it, I’m just glad the worst is over.

      How did the cannabis work with you?

      • Are you on any pain meds now?

        Cannabis took the edge off but as I have a young family it’s something I only took at night. It made me drowsy and couldn’t wake up properly in the morning x

      • If you are still needing something look into a vaporiser for your cannabis. Much more effective and it is completely odourless and smoke-free.

        I am still on plenty of nerve painkillers, gabapentin, amitriptyline, pregabalin etc

      • No judging here at all, from someone who has never taken anything, of any description – not even a single puff of tobacco. Cannabis has a reputation for being good for pain relief. And in those circumstances, anyone would try anything. It’s got to be better for a person than morphine, anyway…!

      • The medical profession need to have a good look at why the don’t supply cannabis. They will write prescriptions for plenty of other drugs that would be illegal if traded on the street while alcohol is causing the NHS £millions every year. Things are back to front!

      • Don’t start me off on a soap box. Just…don’t. Big companies, with big money, influencing decisions that should have more objectivity. It happens everywhere, all the time. And small interests with no money = no lobbying.

        Everything from the contents of cosmetics to the rise on baby formula compared to breastfeeding.

        Oh, I said not to start me off and then the soap box ambushed me!

      • You have just echoed my own feelings, we should start our own political party! Wouldn’t be a tough job to be doing better than the current mob. If you’ve got the money, you’ve got the power. Great story, thanks for sharing

        Feel free to have a rant any time you want!

      • As much as anything, if you have money you have time. Time to produce research, write documents, lobby, develop new ways of selling old stuff, etc.

        I don’t blame anyone for it, I just don’t like it. And I wish the people making the decisions would take time to find out more. BUT there is the irony – they do not have the time to go searching for information, and the small people don’t have time to put it all together to make it easy for them – they are too busy just DOING.

        I will not blame any government in power for this (whatever the party) because I see it as a systemic issue in humankind. And I don’t have a solution.

        And I don’t have the time!!

        I research for me, for my family and my life, to make choices for us that I think are the best I can make. And feel guilty that I am not pushing through changes for those who have no choices; and worried about how one day that might be me, or my family; and then I implode and have to stick my head back in the sand and just make the small choices. With the limited information, energy and time I have. Knowing that there is usually more than two sides to every argument and decision I make! ::sigh::

      • I think you have found a subject for a new blog!

        You obviously have very strong feelings on the matter. As you know, blogging can be the start of pushing through change. You never know the ripple effect it may have.

        I do think there is a responsibility for political parties to seek out the answers that are not presented to them by fancy PowerPoint’s with lots of research backing them up. I think if a possible solution that is brought to their attention then it is their job to look into, research it and evaluate it. Let’s face it, they have the time and the money.

        Anyway, let’s not get too heavily into politics.

      • No, no, no, I do not have the time for another blog! I barely have time for the one I have, so someone else can take that idea and run with it. People probably already have, to be honest.

        And I don’t have time to think about all the decisions I make, I just have to make them. I admire people who lead ethically congruous lives, with all organic stuff, and environmentally friendly everything. I have to limit myself to: organic veggie box (topped up with junk from the supermarket, although I try to avoid air freight); fuel efficient cars (although the manufacture of a car has a bad environmental impact); now some organic facial stuff (with cosmetics from MAC); solar panels (but is the manufacture of them OK? And the disposal?!) Etc etc

        It’s all a mess, and a hodgepodge. I have a young friend who has just started university. He has passion and energy and is very (very, and rather boringly at times) vocal about the environment and how it is all going to hell in a handbasket. But what is it that I, personally, can do? I do not have time, energy, passion or even interest to campaign. And there are so many MANY subjects that are all important; so if I did have all the above, which would I choose anyway? Environment? Big companies drugging the world? Child exploitation? Women’s education in third world? Poverty? Animal cruelty? It’s all awful, it is all appalling, it all tugs my heart strings. And I feel guilty about not doing my utmost to change the world about it. But then, I have other, smaller, things to concern me. Perhaps my world is too small? But actually, taking my son out to dinner, planting green beans and making jam *IS* my life.

        Am I bad for leaving it to other people? Or is it just that I am being true to myself and my personal calling and heart desires? Making small ethical choices in a small way – senseless acts of beauty and random acts of kindness. Trying New Things, and encouraging others.

        I agree with you about big powers having responsibility to look into options; and I also agree – let’s not get too deep into politics!! (Oh, and thanks for having a blog where we can all comment and discuss and be supportive of each others’ rants!!)

      • I’m glad you got all that off your chest 🙂

        We all have our own circumstances, our own limits so some people can campaign and fight for change more than others. I suppose having the right beliefs count for more than anything, nobody can expect you to champion them all the time.

        You concentrate on making your jam the best jam that you can and that’s good enough for me 🙂

      • Bless you. I will! (And some of it is even award winning – I entered a local agricultural show really just so I could get a free entrance ticket and I came away with top prize!!)

        By the way, I think I read on your blog that you live in Glasgow, is that right? If so, how close to the centre / the airport can you or a carer get? If you’d like to try some of the jam, I am passing through at the start of next week!

      • What brings you through my neck of the woods?

        I am only about 45 minutes away from the airport or the city centre. Are you spending some time here?

      • I pass through fairly regularly as I have a client in Stranraer, but that means I am normally driving straight from airport to motorway and on, as swiftly as possible.

        Next week, on the other hand, I am in the city centre for a conference – Strathclyde University’s international six sigma conference. Mon and Tues at that, then down to Stranraer for Wednesday. Monday night = dinner out with my boss (aka husband!) so I am looking for a cuisine I have not yet tried.

  3. Lizmm67

    A friend of mine broke her back in a road accident a year ago. Luckily for her there was no lasting damage, in fact just the opposite, after being told prior to the accident she was unable to have children, last week, she gave birth to a beautiful wee boy. She was pondering what a difference a year makes, and I told her you sometimes have to experience terrible lows, to truly appreciate the highs. My lows have come in the form of losing loved ones much too young, your lows sound almost unbearable but from your blogs and tweets I can sense your appreciation for life, it shines through and inspires every time. Loving your work as always x

    • I just posted a reply but it seems to have gone missing.

      If we have experienced terrible lows, be it pain or losing loved ones or anything else, I do believe that we can be more thankful for the good times. Maybe even more thankful for the simple things in life also.

      Your friend will look at her son as a miracle, great story

      Thanks as always

  4. I never imagined what pain could be like till I experienced severe chronic pain for myself. You are right that there are no words to convey what it is like to anyone that hasn’t experienced it. Even as someone that lives with chronic pain I I find it hard to comprehend on my better days just how bad it gets on my worst days.

    • That’s very true. It’s only ‘in the moment’ that the pain is understandable. When it’s a memory I can doubt myself “surely it wasn’t that bad?”. I wouldn’t wish the pain on anyone but I do wish they could understand.

      Thanks for commenting

  5. You have endured so much and come through it all, a totally amazing achievement buy and amazing person. I have suffered knee pain since I was 15 and I’m now 40. I’ve been on medication all most constantly from that age, clocked up 16 knee operations, an above knee amputation and a revision of the stump. Not a record I’m proud of or wanted but this is my cross I’ve had to bear. Pain is evil no matter how strong or constant. I think it can do just as much damage physically and mentally to a person than an injury, illness or medication. To have suffered as you did for as long as you did and come out the other side is nothing short of miraculous. I cannot begin to imagine what those two years were physically like but understand some of the effects and emotions as a result of it. As with a disability pain affects not just us but those around us. We all have different pain thresholds but once it takes hold it can be debilitating. Night-time is the worst time for any nerve pain as we try to switch off our minds to settle into sleep. The brain has less occupying it so the intensity of the pain increases, causing even more distress on our minds and bodies. The body has an amazing ability to forget pain though, useful for women as they would probably never have more than one baby lol lol. The pain of my stump revision was the worst pain I had ever experienced, even worse than the amputation, but I can’t remember bad how it felt now. The thing that we have to hold on to is the hope that it will get better and will eventually end, usually at some stage it does. Anyone who has been through sever or long-term pain definitely comes out the other side a much stronger person, and you Steve are testament to that fact 🙂

    • Thank you yet again for taking the time and putting together such a thoughtful response. You do understand so much of how I feel and what I’ve experienced, I’m thankful to have you around. I agree with absolutely everything you have said, especially about the emotional distress of pain.

      Thank you again. I need to send you an e-mail but probably won’t get a chance until tomorrow. Talk to you then

      • Look forward to hearing from you 🙂

  6. I know you’ll not thank me for saying this and you probably don’t want me to say it but you are one very brave guy.

    • Since it’s you, I will let you off. Seriously, I do know how to accept a genuine compliment, thank you very much and thank you for all the support you have given me.

  7. It is so good to hear that you’ve found relief! I think I’ve shared with you that I’ve been through my own battles with pain. I was on dilaudid (one mg of dilaudid is equal to 6 mg of morphine) for quite some time. It would help buffer the pain, but the pain never completely went away for years and years. Tough to deal with! I’m so glad you get pain free days! I haven’t touched anything stronger than an aspirin for a long time now. You’re right, if someone had told me that I would one day have relief while I was in the middle of the craziness I wouldn’t have believed them. There’s definitely hope!

    • I don’t know if it’s the pain that shatters hope or the medication but I wish there was a way to convince people suffering that it will end. I have tried and I know it is going in one ear and out the other, as it would have done with me.

      I’m glad you can look back on your tough times and realise you are stronger for them, hopefully aspirin is all you ever need again x

      • *Fingers Crossed* I hope so too! I’ve been working on trying new things to overcome what I’ve been dealing with lately. Meditation techniques and such. Maybe I will blog about them!

      • For obvious reasons, I hope you do. I would be extremely interested to read about that. Something I know zilch about but would welcome some educating. Go for it!

      • For sure!

  8. WordsFallFromMyEyes

    Steven ‘torturous’ is indeed the word. This is just foul of life. Two years??

    Judge I will NOT! If cannabis can give relief, my gosh, smoke and SMOKE. That nurse at your bedside with tears… wow. Just, that would have expressed so much.

    Amazing writing. Thank you so much. God, thank God I have what I have and must not forget.

    Steven, you’re magnificent: to write, to be honest, to keep on living as best you can. Warm thoughts to you 🙂 N’n.

    • Thank you. Thank you for taking a moment to appreciate what you have, that means more than anything.

      You are very kind.

      P.S. I would eat cookies, not smoke (got to think of those lungs) 🙂

  9. Thank you for sharing this post with us all. I’ve had my share of extreme pain but my god this takes the cake! I was watching this programme today about hydro therapy and this quadroplegic chap was talking about how it helped (though not sure if you could do it with ventilator issues) but he made one point that was so interesting. He said that when you’re in the water your body is no longer tensed up, it floats and releases the stuck energy/stiffness etc that can’t be done through bed physio. He could only move his eyes, but was now able to move head quite far from side to side. Had me in bloody tears! Can’t we hook you up to dive gear and stick you in a pool?

    • An inflatable ventilator, get the patents sent off straight away 🙂

      I have asked in the past but for obvious reasons, it’s not possible. I don’t think anybody’s pain ‘takes the cake’. If it’s extreme to you at the time then it’s just as relevant and severe as the next persons. There are no points, it’s all subjective.

      Thanks for taking the time to read and for the comment Beth

      • being stubborn and odiously silly I’m going to read up some more anyway. If they can send men to the moon they can bloody design a ventilator for pool use!

  10. Hey Steven,
    You may not want sympathy, my friend, but I can’t help myself about that. I still feel sympathy for you and I don’t believe that’s a bad thing. It’s pity you don’t want, and I would never pity you. You are one of the strongest persons I have the pleasure to know.
    And being from Holland, you will never find me judging on the cannabis. 😉
    No one should judge about the pain of someone else, some people think that breaking a arm or something is painful. Well, that’s just a tickle, I know. On one point you are prepared to do almost anything to get some relieve!
    I can always read the positivity in your posts as well and it amazes me every time. You are a special individual, let me tell you that!
    Thanks for sharing again, Steven.
    Lots of love and hugz to you!

    • You are most probably right. I would hate for anyone to pity me, I would find that insulting.

      I have no problem with you having sympathy for me because while you appreciate the suffering you also recognise the positivity. That is very important to me and something I always try to convey. I’m glad that works, at least it does with you.

      Thank you as always for your comment and for your great encouragement.

      • I know, it is insulting indeed.
        Your posts actually encourage me. You are very inspiring Steven, you truly are. Lots of Love and hugs to you

  11. I also wondered about your pain level now, but you answered that. Thank you for telling us how things are with you.

    • I’m glad to. Please, feel free to ask anything at any time. I’ve yet to have been asked a question that I’m not willing to answer, I’ve got tough skin so if you do want to know something then please just ask.

      I hope you are keeping well

  12. I’m grateful every day that Becky isn’t in pain. She’s had her moments, but that’s all they were. You’ve been through the ringer haven’t you. Thank goodness that is behind you. I am starting to see where that great attitude came from…

    • Morning Cheryl

      Glad you are still doing the rounds and keeping in touch. Please tell Becky that her friend from over the sea says hello.

      Thank you
      x

      • Becky says, “Hi” and waves. Good news today, Becky’s bone density has increased!

      • Great news, very glad to hear it 🙂 🙂

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