Losing Control

I’m writing this post after undergoing a procedure at the Prince of Wales hospital on Tuesday morning. It’s been two days now and to be honest I still feel awful… my whole body is sore and I still feel quite dizzy and nauseous. I’m writing this post as I want to write down a record of what happened while it’s still fresh in my mind and to help collect my thoughts.

I don’t talk about my health that often but many of you probably know or have guessed that I have a few health issues. I don’t like to talk about them much as I’m a private person but essentially I have had chronic head and neck pain since I was a child, the most frequent of which are severe migraines which have worsened over the years. They’re extremely painful and the main reason why I don’t update my blog as frequently anymore and why my writing has slowed, as it’s become much more difficult to concentrate. I treat them with medication which helped for a while but over the years it’s stopped being as effective.

I’ve tried a number of different treatments over the last few years but they either haven’t worked or I’ve had very severe reactions to them. Many have actually made me much, much worse and have taken weeks or months to recover from. The doctor I have been seeing at the PoW suggested trying a lidocaine infusion instead as it works in a different way to the other treatments I’ve tried and he thought it might have more success.

To be honest I wasn’t that comfortable with the idea. Lidocaine works by blocking pain signals before they reach the brain and it’s increasingly being used to treat neuropathic pain and refractory migraines. The thing I didn’t like about it was that it requires up to a week’s stay in hospital while they monitor the effects; given how I’m extremely sensitive to light and noise, I didn’t see how that was going to be practical – spending more than a day outside of a controlled environment for me is like torture. I was also wary of subjecting myself to yet another treatment given some of the severe reactions I’d already experienced over the last year and I dreaded the idea of going through all that again. But I agreed to a short day trial to at least see how it went, particularly given that the side effects seemed fairly routine.

I had about a six week wait and I still felt rather anxious about it, so I tried to keep busy and get as much done before the procedure as I could. I got stuck into my writing, saw a couple of films I’d been waiting to see, read a few books, started going through my possessions for when we move in a few months, and I also started getting back into my photography and exercising more as well as I knew I probably wouldn’t feel up to it for a while after the procedure.

Unfortunately when the day finally arrived, from the beginning everything just seemed to go wrong.

I had to be at the hospital by 6.30am and I hadn’t slept at all the night before, a mix of my insomnia and anxiety, which probably wasn’t the best way to go into a procedure. My mother went with me and it was bitterly cold, the kind of cold that just makes everything feel numb, and when we arrived at the admissions area, no one was there. The staff were late by several minutes and by the time they opened up, all the patients were standing in the corridor, trying to stay warm.

They took my details and we waited for about twenty minutes in a small waiting room before being moved into a larger one. By now I had already developed one of my worst migraines from the bright hospital lights and all the noise as more and more people were admitted; it was probably relatively empty for them but for me it was agony and I was wincing whenever anyone walked by. I didn’t want to prejudge it but already I couldn’t see how the infusion could make any difference – I was surrounded by triggers and even my normal medication wouldn’t work on this.

After a little while one of the nurses called my name and we moved to the preparation area, where we sat while the nurse ran through my details. There was something rather abrupt and unprofessional about her. She refused to look at me while talking and got my date of birth wrong, then rushed through my details like she had somewhere else she wanted to be. She didn’t even go over what I was having done or what medications I was on. I noticed my mother frowning as well, so it wasn’t just me who thought it was strange.

Afterwards she asked me to get changed into a hospital gown, which I did, and when asked if I could have a second blanket afterwards, she said yes and muttered something about “toughening me up”. Now I was getting extremely irritated; if she had actually bothered to do her job, she would have seen that one of my medications causes poor circulation and makes me extremely cold. But the thing that really got me was that she was treating me very differently to everyone else – I’d just heard her talking to a patient next to me, running through all the details with him that she hadn’t with me, and her tone was very different as well. It felt like because I was younger than the other people there and she couldn’t see anything obviously wrong with me, that she thought I was wasting her time. Well, just because you can’t always see when someone’s in pain doesn’t mean they’re not. I finished changing, took the blanket and sat back down, fuming. If this was the current standard of nursing at the PoW, I was not impressed.

For the next half hour or so we sat, waiting, and my migraine got much worse. The lights in the area were extremely bright and the noise got louder and louder as more and more people came in and phones went off and equipment beeped. There was no way to get away from it and it felt like torture. I was seriously considering leaving when the anaesthesiologist came in; by this time I was in so much pain I could barely talk but he said it would be about another ten minutes and then I would be in a quieter ward.

About fifteen minutes later they took me and several other patients to the surgical ward; my mother went home as they don’t allow people to stay with you during the procedure. The ward wasn’t exactly what I would have called quiet but given the amount of noise outside, it felt like a big relief.

I waited there for about ten minutes before they wheeled me in to an operating theatre. The cart smashed into one of the walls on the way through. Ouch.

One of the nurses introduced herself and told me that it’d be about fifteen or twenty minutes before they’d start. She was about my age and was the only person so far who actually seemed to get what I was feeling; she sat and talked to me and helped to ease my mind a bit, which I appreciated. She even offered to turn the lights down if they were too bright for me. It was a marked difference after how I’d been treated by the other nurse.

After fifteen minutes my doctor and the anaesthesiologist entered and after going through what they’d be doing again, he inserted a cannula into one of the veins on my left hand. After that I was wheeled through to a ward and they introduced the lidocaine solution while a nurse hooked me up to monitor my blood pressure. I was given a sheet of paper and a pen and asked to record the level of my pain every ten minutes. The idea was to try it for about an hour or so to see if it had any effect and if I could tolerate it. If I noticed any side effects I was to tell the nurse immediately.

The first twenty minutes passed relatively normally. There was a clock on the wall to my left and I counted down the minutes carefully. The lidocaine felt strange as it entered my system, like a cold fire running through my arm. The nurse checked my blood pressure a couple of times and asked about my pain. It hadn’t improved but I didn’t seem to be having a reaction either so far.

Then about five minutes later I started feeling dizzy. It wasn’t terrible but it was noticeable… if I moved my head the room spun and I didn’t feel secure, like I might fall out of bed at any moment. I told the nurse and she made a note of it. A few minutes passed and the dizziness got much worse; the whole room was spinning now and everything seemed blurred and out of focus. I was also starting to feel very nauseous as well. Then I started retching and dry-vomiting violently.

The nurse got me a sick bag and I started holding on to the side of the bed for support. She went to get my doctor, who said if I wanted I could have a tablet for the nausea. I did and I closed my eyes, trying to block everything out.

Nothing happened for a few minutes after that, then I started to feel a strange feeling in my throat. I tried swallowing and coughing to clear it but it didn’t seem to work. I tried to tell the nurse but found I couldn’t talk properly.

It was strange, like nothing I’d ever experienced before. It wasn’t like I couldn’t talk, more like whenever I tried my words didn’t match what I wanted to say; they kept getting mixed up even though I knew what I was trying to say and I kept stuttering and mangling my words and finally found it very hard to be understood at all. This was something I hadn’t expected, hadn’t even been aware could happen, and it really worried me.

With difficulty I managed to explain myself to the nurse, who went to get the doctor. A few minutes passed and I was getting more and more frustrated – I hadn’t realised how much I took something as simple as talking for granted until it was suddenly taken away from me.

Then my chest started feeling tight and a few moments later, I started shaking and jerking uncontrollably. It was subtle at first but no matter how hard I tried I couldn’t stop it. It felt like I was having an epileptic fit and now I was getting really worried. I told the nurse and she went to get the doctor again.

It was a horrible feeling. I felt like a prisoner in my own body, a spectator watching myself from somewhere else, unable to move or shout… I had lost all control and it terrified me. But deep in my mind I was worried for another reason as well. When I was a child I had a condition that caused my body to jerk uncontrollably. I grew out of it just before I turned two but doctors had warned my parents that it might come back if I suffered trauma. I’ve lived most of my life trying to avoid things that might bring it back (contact sports, etc) and I kept thinking that this might have triggered a relapse – one that might not go again.

About forty minutes had passed now and the tremors were getting worse and much more forceful, lifting me from the bed, and I couldn’t even hold the pen now; it kept falling out of my hand. The nurse and my doctor came back. He looked concerned and asked me a few questions which I tried to answer, including how the pain was. How did he think it was? I felt miserable! Somehow I managed a lucid sentence and said that this was the worst reaction I’d ever had. He said it was almost over and I should try to get through it if I could.

The tremors got worse over the next few minutes and spread to my arms; I could feel my body jerking and shaking constantly now and my head was pounding like a jackhammer. The dizziness seemed to have subsided a little though; the tablet they’d given me seemed to be working. Still, the next five minutes felt like the longest of my life. I just kept staring at the clock, willing it to be over.

Finally my doctor came back. Seeing that nothing had changed, he said to take the drip out. It hurt like fire but I didn’t care – I just wanted it out.

It took around an hour for the lidocaine to leave my system. I stared at the clock and counted the seconds; there wasn’t anything else to do but go through it. For about twenty minutes there was no real change, just the constant shaking and the pounding of my head and the feeling like I was going to throw up. Then the dizziness and nausea slowly dissipated and about ten minutes later the tremors started to become less frequent. It took about another twenty minutes before they finally seemed to stop, though the jerking had spread to my legs as well by then. My speech returned throughout the hour as well but still wasn’t quite normal… I had to concentrate very hard not to trip over my words.

They monitored me for another twenty minutes or so then said I should be able to go home. I was surprised; I still felt awful and a part of me thought it was too soon to know it was really over. But by now the ward had filled up and the noise was incredible, so I just wanted to get out and rest back home, so I agreed and was taken back to the preparation area to wait to be picked up.

The original nurse escorted me. Perhaps she could see I was feeling awful this time or had read my chart or had had her morning coffee or whatever but she treated me a little better this time. She was still rather unprofessional though; while I was getting changed back into my clothes she was busy talking to another nurse about Amy Winehouse, asking each other how “old and burnt out” they thought she had looked before she died. I just shook my head and tried not to listen. Never mind it being unprofessional, can’t we let the poor woman rest in peace rather than circling around her corpse like a pack of hyenas?

My father arrived about ten minutes later to pick me up. By now I was pretty sure the lidocaine hadn’t completely left my system; I was feeling dizzy again and my body felt sore all over and I was still having some problems speaking. But I just wanted to go home, so I didn’t say anything and we left.

I spent most of the rest of the day in bed. A couple of times I felt like the tremors came back but not quite as severely and they didn’t last for that long. My mother was furious when I told her what had happened and I had to stop her from phoning the hospital straight away to complain. Maybe she should have but there just didn’t seem like much point. Lidocaine is supposed to be fairly benign and I think they were as surprised by my reaction as I was.

I slept for most of the day and yesterday and I’m feeling a little better now. My body still feels sore and I’m still a little dizzy but I can speak normally again and I haven’t had any more of the tremors for over a day, which is a relief.

I dreamt about it last night though… I imagine I will for a while. I dreamt I was back in the ward, shaking uncontrollably, trying desperately to speak but not being able to make myself heard. Looking back I think that was what scared me the most about the whole experience, the idea that I had completely lost control, reduced to a prisoner in my own body.

If I’m honest I think that’s probably the thing that scares me the most of anything in life. I’ve never really been someone who’s afraid of death; I don’t believe in Heaven or Hell anymore and to me death is just the end of life, a natural thing that there’s no point worrying about. It just is. I do however think there are things far worse than death, like completely losing control of who you are, who you were. To me that’s isn’t life, that’s existing, and I would rather be dead than endure that.

While I know it’s not the same thing, I feel like in a way I got a small idea of what that must be like for some people – for Stephen Hawking, for Parkinson’s and Alzheimer’s sufferers, for people trapped in the deepest of depressions – and it’s not something I ever want to experience again. I felt completely powerless, hopeless, and all I could do was lay there and stare at the clock as the seconds ticked by, screaming inside my head, willing myself to stop or to speak, but I couldn’t. It was horrible. When I got back I said to my parents that it was one of the worst experiences of my life and I truly believe that. It’s not something I’d wish on my worst enemy.

In some ways I guess I should feel angry about what happened, particularly as I don’t feel like I was properly prepared for it and no one seemed to really listen to my concerns beforehand. Everyone I spoke to and everything I read seemed to suggest that it was fairly routine – and perhaps such a severe reaction is unusual, maybe even unique, but shouldn’t I have at least been told that these kind of side effects were a possibility?

To be honest though I’m more concerned with what to do next. Essentially I went through this for nothing and that I’ve had so many treatments over the last few years and that I haven’t been able to tolerate any of them is a concern. If I can’t tolerate any of them and my pain keeps getting worse, what happens then? Maybe I’ll have to be de-sensitised to the treatments somehow but I haven’t any idea what that would entail or if it would even work.

I don’t know. Honestly I just feel so tired of it all… going through all of this, getting your hopes raised and dashed again and again, it’s exhausting. You can recover physically but sometimes it takes much longer to recover mentally and I don’t think I was there before the procedure, let alone now.

I also don’t want to lose hope either. There are other kinds of treatments overseas which we just don’t have in Australia yet. Many people think genetic treatments are the way of the future as well, so maybe that’s something to keep an eye on. Or maybe Apple will create an iBrain in the future. Who knows, maybe they’re working on it right now. I mean, they need something after the iPad, right?

In any case, this hasn’t been an easy post for me to write. I’m reluctant to talk about my health at the best of times, let alone this kind of experience. But if anyone reads this and it warns them of some of the dangers of these kind of treatments, helps them to know that they should always ask questions and know what all the possibilities are going in, then hopefully it will be worth it. I wish I’d known everything going in and I’d like some good to come out of this if nothing else.

6 thoughts on “Losing Control

  1. That’s incredible and wonder why they failed to let you know the possible side effects. The anesthesiologist is supposed to let you know about the effects, if not the doctor out of courtesy.
    I would contact an attorney. Hope you are feeling better soon.

  2. I wish I knew what to say. (((hugs))) CJ. I would have been terrified. And to think you had no one with you, that they don’t allow family. So sorry. I hope you start feeling better. I wish you didn’t have to suffer through all that pain all the time. I’m thinking of you.

  3. I felt angry enough for all of us son, especially as I asked this doctor if he could help you. Damn your extra sensitive genes…ooh that means damn me though doesn’t it? Yikes.

    One of the things that got to me the most was how you like to diffuse things with humor…and it was so frustrating because you could not quip… cause you could not talk properly.

    Oh, and you did not mention that the jerking lifted you off the bed. Am beyond angry now, am truly devastated.

  4. I am not alone in wanting to give you a hug, Chris, but I know that this simple gesture will not erase the trauma you experienced during the visit. When I was 10 years of age, I got shingles. I recall how every movement in the house felt like liquid torture. It was horrible but even though I still have numerous scars on my chest and back from the blisters, I am thankful I didn’t get Neuralgia like so many do after the sickness has subsided.
    I try not to think how it would be to have to deal with pain on an hourly basis, because it was bad enough having to deal with it during the Shingles. In the end, I hope that you find a suitable treatment to your chronic pain sooner rather than later because you deserve a break from it. If you ever need to talk, feel free to tag me on skype, and if I am not logged on, PM me on twitter. At least you can give your back a break while laying down. And if it becomes a real issue, I might be able to type stuff out for you while you talk. (Just an idea anyway)

    Your friend,
    Dianne

  5. I am heartbroken for you ceej. I know how long you have been dealing with the situation, and how devastating it has to be for you and your family. As you said, it (almost) would have been worth it, if it did, finally, clear your pain, but now, not knowing where to turn next must be even scarier. I would invest in a company that made the iBrain! I so wish there was something I could do for you from so far away other than offer my continuing friendship and support. I must compliment you on how well you told the tale. Your writing skills are as top-notch as ever, even through this time. My thoughts are with you as you continue to recover, dear friend!

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