Tag Archives: Ketamine

A Ketamine & Lignocaine Infusion for CRPS Saves the Day

Last week, it finally happened. A break from the pain. It was truly and totally amazing and my wonder was possibly enhanced by the fact that I was kind of tripping out at the time. What ketamine takes away in pain, it likes to give back in sparkly and confusing mind vacations.

My lowest pain level in years.

My lowest pain level in years.

In December, I had a single day ketamine and lignocaine infusion. Unfortunately, the pain relief wore off really quickly and by the week after the infusion, I was flaring back up to levels of pain that are far, far from manageable. I was experiencing a severity of symptoms that hadn’t been that bad since the days when I needed a wheelchair to get more than a few metres. Along with the physical symptoms, my ability to cope took a beating and I found myself cycling back through psychological issues that I’d thought were dealt with.

At the exact same time as my pain was returning, the weather in Melbourne started gusting in on this weird pattern that saw heat and humidity blowing across the desert from the tropical north west. Temperatures went up and temperatures went down, but the high humidity wouldn’t budge. I completely blame this weather pattern for how much pain I was in during December and January, it was the only major variable and I know from experience that humidity is the biggest enemy to my easily inflamed body.

*Shakes fist at the sky*

Realising that I was falling further and further away from coping or being functional, I contacted my pain specialist in the hope that I could go back early for the next infusion and perhaps stay a little longer than a day. He’s a super helpful guy, so I quickly found myself booked in for a three day infusion. Knowing that there was some relief in the near future made it a lot easier to cope with high pain levels for the couple of weeks that I had to wait.

A couple of weeks is nothing, really, nothing at all. I felt very lucky, many people wait years just to have a chance at a ketamine infusion.

I have never before felt as excited to go to hospital as I did last week. A couple of days before the infusion, the weather cooled down and my pain levels dropped substantially, from a constant 8-9/10 to about a 6/10. Pain ratings are a weird and subjective thing, but I knew my pain usually drops about 4-5 points during an infusion. The December infusion started at 8/10 and I think it might have hit a 4/10 before bouncing right back. This time, I was starting out lower and so I had a lot of hope that I’d feel the lowest pain scores I’d had in years.

I tried to keep my focus off of hoping for long term pain relief and just looking forward to lower pain levels while I was plugged into the IV bags.

Once I was hooked up and ready to go, the doctor popped in to tell me that I was going to be getting a higher dose of ketamine than usual. In fact, rather than building up the dosage at all, I was just going to get the highest amount that I’ve had in the past for the entire duration of the infusion.

I was a little nervous, but mostly thrilled. I had a crappy experience with high doses the first time that I had a ketamine infusion, however there were a lot of other crappy things about that infusion and these days I am used to how it feels to be on the drug. Stress and fear can quite easily get in the way of pain relief so being able to cope with them is important.

The drug dripped in and any sort of ability to concentrate drifted away. Within an hour or so, I was already feeling less pain. I plugged in my headphones and snoozed the afternoon away in a loop of Taylor Swift, Damien Rice and Ella Hooper (there might have been a little drugged up splurging on new albums).

By dinnertime, it was all I could do to raise my head and munch on a few hot (lukewarm) chips. I had a serious case of THE NAUSEA. It felt like all I could do was burp up foam. I barely ate anything over the next 24 hours. Feeling nauseous is highly unpleasant, but do you know what it’s better than? Being on fire. It’s much better than that. So I sucked up any urge to stress about my gurgling belly and just enjoyed the way that my pain levels kept dropping.

I usually get a little bit nauseous during an infusion, however I hadn’t felt anything like this since that first high dose infusion years earlier. Why this time and not every time? Your guess is as good as mine, or the doctor’s.

I find it hard to sleep on ketamine, but also hard to be awake. I just drifted along in a dream state, fluctuating between feeling like time passed quickly and very, very slowly.

My pain level was bouncing around between 4/10 and 6/10 on the second day. That’s when the lignocaine infusion was added. In the past, adding the second infusion has brought my pain down further and usually helps with the nausea. It worked a treat this time. Not so much on the nausea, but when I woke in the early hours of the third morning, I could hardly feel the burning at all.

My pain level was a 1/10. A ONE. Just a tiny little one. Barely there at all.

It was heaven. Temporary heaven, things that are that magical can’t be expected to last.

I was unplugged early on the third day as my tummy was getting a bit react-y at the infusion point (I have these infusions subcutaneously because I don’t tolerate needles in my arms well). I was very OK with this, I was still enjoying pain levels below 4/10 and was looking forward to being able to eat food again. I came home, rested up and watched my nervous system putting on a show.

Pain goes up, pain goes down, pain goes round and round and round.

It’s important to remember that ketamine isn’t a cure, I have never achieved remission from infusions (although some people do), I simply get to enjoy lower pain levels that make it easier to function as a person. It’s still Summer (kind of) and I’m still getting inflamed. I’m still needing painkillers at night and sometimes during the day, but the difference is that they are working a lot more effectively at the moment.

My arms and legs feel like arms and legs, rather than uncontrollable burning blobs attached to my torso. I am able to move and cook and exercise. These things still hurt, but I can do them – that’s the difference that the ketamine makes for me. It’s the difference between being useless and being functional, not the difference between pain and no pain.

My immediate goals are the same as always. I’ll keep doing what I can do, try not to overdo things, try to keep my pain levels manageable and build my strength as much as possible. The best thing to do with low pain levels is to simply enjoy them while they last.

Love & Relief,

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  • An Amazing Consultation with a Pain Specialist

    Dear Audy,

    I have been seeing my current pain specialist for about a year. During this time, I’ve made a lot of progress towards a stronger body thanks to lowering the pain using ketamine infusions and working my butt off every day. Everything is going great, which is why it was strange to wake up early today feeling trepidation about attending an appointment that I’d been looking forward to all week.

    That anxious feeling was just the ugly face of history threatening to repeat. In my experience, pain specialists often get a bit antsy around the one year mark. Some of them decide that 12 months is long enough for me to be cured of CRPS already and then decide not to treat me anymore. I know, right? It’s hard to be a doctor and not be able to fix incurable diseases by magic, it’s really hard to exercise compassion when reality is reminding you that your medical degree does not make you a god.

    Please, everybody, let’s take a moment to appreciate the overpaid medical specialists who were studying so hard that they forgot to develop emotional maturity. Those poor dudes.

    Now, let’s talk about what happens when a specialist is supportive instead of distortive… (What do you mean that isn’t a word? It fits into this sentence perfectly!)

    It was so freaking amazing to have a totally positive consultation this morning! It went something like this:

    Pain Specialist: You look amazing! Have you lost weight?

    Me: Yeah, I can move now! My legs have muscles in them!

    Pain Specialist: Yay! (might be paraphrasing) Are you still studying?

    Me: Nah, my hands broke down before I could finish the course. They started flaring badly about a month after the last infusion because I did some weeding and it was too much for my forearms to handle, then I learnt that I need to be stretching my forearms because they’ve forgotten how to be flexible, so I’ve been doing that since then.

    Pain Specialist: *nods* You’ll probably find that building up that strength will take time, much like it has for your legs.

    Me: (WOAH DID YOU JUST NOT YELL AT ME FOR NOT GETTING BETTER IN A STRAIGHT LINE?!) That’s what I figured! They’ll catch up if I keep working at it.

    Pain Specialist: You’re doing really well. A lot of patients want medication to be a straight out cure, however relieving the pain doesn’t help much in the long term without a lot of determination to improve strength and lifestyle.

    Me: (WHY ARE YOU MAKING SENSE? ISN’T THIS THE PART WHERE I GET KICKED OUT AND THEN GO HOME AND CRY?) Oh, and I’ve stopped taking all my meds. I tapered them off but they’re all stopped now.

    Pain Specialist: *nods* *makes note* *smiles*


    Pain Specialist: OK, so we’ll do another day? (of ketamine)

    Me: Yes please! ASAP please!

    Pain Specialist: Sunday?

    Me: I’ll be here!

    And… Done. Basically. I mean, we chatted a little more than that but you get the gist.

    BTW, that's Momo. He's new around here.

    BTW, that’s Momo. He’s new around here.

    The things that made this appointment fabulous from a patient perspective were as follows:

    The doctor listened when I explained about my hands playing up and acknowledged my efforts to cope with that hiccup. A lot of doctors seem to forget to pay attention to their patients’ answers because they’re too busy thinking about what the patient “should” be saying.

    The doctor did not have impossible expectations of me. The assholiest Melbourne specialist that I’ve seen once berated me about not having a job or volunteering even though at the time I could hardly walk or feed myself. As you can imagine, that was super helpful and made me feel absolutely chipper.

    The doctor did not blame me for my condition. Sometimes chronic conditions get worse and sometimes they get better and it’s usually not the patient’s fault. We don’t live in a completely controllable environment, I know. Shock! Horror! Can somebody please tell Centrelink?

    And so… I shall be off to hospital for infusing this weekend and I’m super excited! Seasonal flaring has made the last couple of weeks difficult and it will be wonderful to get some relief from that. Hopefully, everything will keep running smoothly and after the infusion I’ll be able to build up more functionality.

    I just can’t tell you how wonderful it is to be able to look forward and actually see how things could be better and then look to my side and see there’s a doctor willing to help me on the journey. Amazing. I will never accept bad doctoring again, I mean hopefully I won’t encounter it, but if I do, that bad doctor will be getting a calmly articulated piece of my mind rather than a tissue full of my tears.

    Love & Smiley Hugs,

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  • Ketamine Infusions: From Bad Reaction to Successful Pain Relief

    Dear Audy,

    Thank you so much for all of the kind messages of support that I have received since posting Ketamine Infusion for CRPS: My Single Day Experience! It is so very wonderful to be feeling better and actually have good news to share with you.

    I’m still struggling a bit with concentration (you guys, I haven’t even been checking on my Sims regularly). I get a few hours of decent thought in here and there, however I’m mostly still focused on increasing my physical activity without injuring myself or causing a CRPS flare.

    I’ve finally gotten my kitchen mojo back and I’m back to enjoying yummy baked things that don’t make me feel sick and pots of healthy Winter stews. Tonight’s dinner is Orange and Fennel Chicken and is already in the slow cooker, so I’m free to use up all remaining brain power on whatever I like!

    Thanks to all of the wonderful people who have shared my last post, I’ve been lucky enough to come across social media comments from a variety of different readers. Several have been kind enough to share their own experiences with ketamine infusions for chronic pain. Sadly, many of these have been tales of horror and hallucination, with memories of distress and despair.

    The strangest thing about reading these stories is that, even though I am now lucky enough to be responding well to ketamine, I was once the patient who had the terrible infusion and then lost all hope. I think this might be a rare position. Ketamine infusions can be difficult to access and dangerous. A failed infusion can mean the end of the line for this method of pain management, it certainly meant that for me for almost five years.

    Nothing about this post should be interpreted as medical advice. I am not a doctor. I have no way of knowing whether ketamine infusions can help you, or your loved ones. I am simply sharing my story because it’s true and it happened to me and I feel like awareness grows bigger with every new and different patient story that’s out there.

    In 2009, I went into hospital for a 10 day ketamine infusion. It was my first time trying this medication and things did not go very well. I don’t need to explain this story to you, though, because I’ve brought in 2009 Caf to do it for me…

    Yeah…it was awful. It’s not easy to watch that video now, to see myself so disappointed and lost. I remember that feeling of hopelessness with every cell in my body.

    Side notes:

    1. I never did get that medical history from that particular doctor. I never had the strength to chase it up. Sometimes, I wonder if dodgy doctors who give up on complicated patients rely on this. Sick people just don’t always make the best follow-up-erers, they’re too busy being sick.

    2. I still have pain that is specifically from that blood test that I mention right before my mitten becomes a puppet (of course it does, the me in me runs deep). It still flares as though the needle was puncturing the skin yesterday. So weird, body. So, so weird.

    And so, you see, I was once this person who had a terrible reaction to ketamine. I heard stories from people who had had positive reactions to their ketamine infusions and were gaining back huge pieces of their lives and, oh, was I jealous! I couldn’t understand why I wasn’t one of the lucky ones and part of me resented anybody who was, despite my efforts to quell these feelings. Understanding that envy is a useless emotion to indulge, those feelings of jealousy eventually just lumped themselves on top of all the other reasons that I found to feel depressed and hopeless.

    I was in horrible pain, 24/7. My CRPS kept spreading even though spread was supposed to be a “rare occurrence”. None of the pain medications helped. I finally got to try the holy grail of CRPS treatments and I ended up worse. Everyone with CRPS seemed to be finding something that worked for them except for me (not true, but it wasn’t a rational mind that was generating this thought stream). My future felt destined to be bleak and I couldn’t think of any way to make it better.

    Now, I am this person who has been receiving regular ketamine infusions that have been helping me to regain a lot of function in my daily life and have helped me to learn how to feel hope again. It’s weird, I don’t have any explanations for why me, or why now, or how the same drug could have such different effects. I don’t know any of the whys and hows, I’m just enjoying this upward swing in my life’s journey and hoping that it continues.

    I don’t know if any other patients with CRPS have experienced this reaction to ketamine, or something like it. Please leave a comment if you have, I’d love to hear from you!

    I don’t know if the fact that this drug didn’t help me and then did help me when administered differently can be of use to other people with CRPS. I’d suggest talking to your specialist if your story is similar to mine and you are interested in pursuing a new try at an old treatment. I have to doubt that I am the only person to have reacted this way to multiple infusions, or that would react this way if given multiple infusions.

    I might be special, I might not. Nobody can answer that without some extensive and expensive clinical trials. I am just a storyteller, so take from my experience what you will. I’ll keep sharing my story as it happens and maybe together, we can learn some stuff.

    This is my story, it’s true and it happened to me.

    Love & Reflection,

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  • Ketamine Infusion for CRPS: My Single Day Experience

    Dear Audy,

    It’s been over two weeks since I had my first single day ketamine infusion to help with the pain of CRPS and I think that I finally have a decent understanding of how it has effected my body…

    Very, very well!

    I started seeing a new pain specialist at the end of last year, who listened to my long, troubled story of failed pain management before validating my belief that, years before, I’d been misdiagnosed as having an allergy to ketamine. Thank goodness for that!

    In October last year and February this year, I went into hospital for 5 day, subcutaneous ketamine infusions. Both were successful at lowering my pain levels and allowing me to increase my ability to function on a daily basis. If you wish, you can read about the experiences of these infusions here and here.

    There are a couple of drawbacks to enduring a 5-day ketamine infusion. Firstly, that’s 5 days in hospital and with the plastic covered mattresses, 24 hour noise and the need for regular checks from nurses. Hospital is not a particularly relaxing environment. Secondly, it’s 5 days on a mind altering drug, which is like some sort of medically sanctioned bender and a 5 day bender of any sort is going to take some recovery time to get over.

    Both 5 day infusions took about a week of almost constant rest and symptom management afterward before I could appreciate the benefits. This time involved very heavy fatigue, an inability to form useful thoughts, a lot of twitching and many sudden attacks of sweating. Between the preparation, actual infusion and recovery, each 5 day ketamine infusion involved 2-3 weeks of time spent away from my usual activities.

    Which was all totally worth it. A break from CRPS pain and symptoms is a rare thing to experience and is worth every effort that it takes to make that happen, however, what if the same results could be achieved with less fallout?

    With this in mind, I quickly agreed when my doctor suggested that I try a single day infusion to see how I coped with that.

    I showed up at the hospital at about 8am and after a couple of hours of being organised by nurses, I found myself with a bag of ketamine slowly dripping into my belly. Just not quite as slowly as during the longer infusions, which began at a dose of 2.5mg of ketamine per hour that was increased regularly over the 5 days. With only 10 hours to absorb the pain relieving goodness, the ketamine dripped in at 10mg an hour.

    It only took a few hours for my pain levels to drop significantly and for my brain levels to drift away into la la land. I spent most of the time snoozing and listening to music. I was disconnected at about 7pm and then went home at 8pm.

    Coming home with a brain that felt like it was floating outside my head was a strange experience. I got nauseous during the 5 minute car ride and promptly threw up as soon as I got home, after which I felt quite wonderful. My pain was super low and I felt like I was dreaming. I quickly got myself to bed to sleep off the rest of the weirdness.

    The infusion took place on a Friday. On Sunday evening, I was feeling almost as well as I had a week after the 5 day infusions. Pain levels stayed low, moving became easier and the post ketamine fatigue and twitches were barely bothersome at all. By Monday morning, I was ready to continue my regular routine of physical rehabilitation and chores, all with less pain than I am accustomed to.

    The most wonderful thing about a single day ketamine infusion is that I’ve been able to continue living without feeling like a huge chunk of my life has just been spent in hospital and recovery, yet I have pain relief that is on par with that sustained after longer infusions. It’s such a good result that I have trouble believing it’s real, I’m just doing my best to enjoy the pain relief and keep increasing my strength while it lasts.

    Last weekend, my prince and I got out of town and attended a friend’s wedding in the Victorian high country. It was wonderful! The cold mountain air agreed with me and I hardly found myself hindered by pain at all, other than during the drive up when CRPS got a bit angry about how much a car vibrates and that I was insisting on being in one for three hours.

    At the wedding, I was able to stand and drink and chat and dance and drink! It was wonderful! I felt so delightfully normal. Pain levels were higher the next day, but not off the charts, I was still able to keep moving and functioning.

    Me as a wedding guest

    Me as a wedding guest

    After returning home, I had to spend a few days resting off the aches and pains of the dance floor. I was pleasantly surprised to find that a little bit of rest was all it took to have my pain levels lower back down again and by midweek, I was back in full swing on the exercise bike, walking and increasing my strength.

    My mind, however, refused to participate. The strangest thing about last week was that even though I was physically able to more than I had been in weeks, I was mentally able to do very little. I…just…couldn’t…concentrate. Instead, I did my best to focus on the physical stuff and assumed that my thoughts would return when they were ready.

    Which, they did. At least I think they did. Look, either my mind is working again or coffee has figured out how to actually puppet people instead of just powering them and we are all doomed to a future of coffee-borgs. Eh…I’m pretty happy with either of those explanations.

    I’m so happy to be in less pain than pre-infusion that I’m pretty much happy all the time. It still feels strange. It feels strange to be able to keep going, keep moving and keep building a healthier body for future CRPS battles. It feels strange to be able to exercise until I am actually sweating from working hard rather than sweating for no reason other than nervous system malfunction. It feels strange to be tired from actually doing things.

    It’s a happy strange, so I’ll just be over here, rolling with it. How long will it last? Who knows. I’m just so glad that the shorter ketamine infusion worked and that I can now look forward to pain relief without all of that overnight in hospital business. Hurrah!

    Love & Sweat beads,

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  • Fighting My Way Forward & Sailing Away

    Dear Audy,

    Ever so slowly, I weave my way through more and more activities which, when lined up in a row, spell “functioning”.

    They’re the strangest feelings, the ones that come after doing things. Pleasant but partly opaque, difficult to distinguish and define. Feelings like accomplishment, value and joy seem like strangers when they return from a lengthy spell of absence. It takes practice to appreciate their light when it comes shining through the dense fog of prolonged uselessness.

    It takes determination to reflect such light, to send it sparkling outwards, trusting that it will illuminate new possibilities.

    I’m starting to see more and more things that I could potentially do…

    Dreaming about the future helps the process of building a solid launchpad in the now. A while back, I set three goals and have spent the time since then chipping away at them. My physical strength is gradually improving as I go for walks, move around regularly and rest enough in between to keep my pain levels low.

    I’ve been on a few solo trips to the grocery store, planned meals myself and cooked some exciting dishes. I’ve eaten a lot more vegetables and a lot less filler. I’ve baked delicious treats that don’t throw my digestion off course and this one time, I even baked a cake just because I felt like it. It was more exciting than it sounds…

    I once had to stop a friend showing me pictures of pretty cakes because I just couldn’t wrap my head around the idea that some people have enough energy/functionality to be able to cook for fun and not just necessity. It hurt, to see fun food when I was struggling to simply have meal time food available.

    Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.

    Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.

    I have been reading every day, exploring blogs and news and tucking myself in with a novel at night. I’ve been trying to note down blog ideas or general life realisations as they happen, finally accepting that my brain won’t just hold onto them for later, no matter how genius or nonsensical they are. I’m yet to achieve some sense of writing every day, but I see that achievement unlocking, not too much further down the path ahead.

    I’m starting to see the pay off for what I have already done.

    I was able to launch. Off the launchpad. The metaphorical one that I mentioned earlier. It’s constructed of hard work and dedication to health. Having built up enough strength to launch, I was able to say yes when a spontaneous opportunity for adventure arose.

    On Friday, I sailed across Port Phillip Bay with my dad in his tandem peddle powered kayak sailboat thing. It was awesome! The sail means that there’s not all that much peddling to do and each peddle counts for quite a bit thanks to the size of the flippers underneath the boat. It was fun to relax in the sun, soak in the ocean breezes and splash through waves when we headed into the wind.

    Melbourne on the horizon.

    Melbourne on the horizon.

    We were out on the water for most of the day. Afterward, I promptly conked out for over twelve hours, bumbled through some of Saturday afternoon, conked out for another twelve hours and crashed out on the couch for what remained of Sunday. I’m still feeling the tiredness in my limbs today, but I wouldn’t expect anything less.

    I do have CRPS after all. It doesn’t give days off, but it does back down a bit when I’m lucky enough to have my treatment and physical strength ducks all lined up in a row.

    A chance to expend energy and then be exhausted, rather than flaring like crazy, is exactly what I have been working for.

    My goals for strength, health and creativity aren’t finite. I will keep on working at them as long as my body allows it and then some. The stronger I am, the more I am able to control the pain of CRPS and the more that I feel like a functioning, useful person.

    I’m so grateful for the lower pain levels that the ketamine infusion have brought, it’s worth working hard in order to keep them down as long as possible.

    I will let the light in and then sparkle it out. I will follow where it leads.

    Love & Progress,

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  • After the Ketamine

    Dear Audy,

    I hope this message reaches you. I seem to have gotten stuck in a post ketamine holding pattern and I’m no longer sure whether or not the world is out there, whether people will still understand English or that anyone even remembers what a blog is…

    It’s possible that some frustration and boredom have blurred together, rendering me temporarily dramatic. Don’t worry, everything sparkles here in Crazytown. Mwahaha!

    Infusion Begins

    The infusion was pretty super dooper (for those that haven’t been playing along on social media, I spent last week hooked up to bags of ketamine that dripped into me through holes in my belly for five days). My pain dropped more quickly than during the previous infusion and I enjoyed some delightful, glorious relief. I had a little flare up on the second to last day and so had a pain relief boost in the form of a bag of lignocaine that also dripped into me through belly holes.

    I came home at about dinner time last Thursday and promptly passed out in the sweet, sweet comfort of my own bed.

    Which is basically where I have been since then. I’m so very tired. I don’t feel like I snoozed in a hospital for five days, I feel like I went on a drug fuelled party rampage. I feel like I was awake the whole time, which is almost the exact opposite of what really happened. It’s no surprise, what goes up must come down and, also, the same week long episode of fatigue struck me after my last infusion. I mean, I’d have to have a pretty short memory to be surprised right now…

    Except about this injured knee that I have. This is new. Well, new-ish. I (allegedly) injured it a few weeks ago by doing absolutely nothing. I’m serious, I sat wrong on the couch or something. Who knew that couches had a right?! It’s political correctness gone insane. Or something.

    Anyway… I had the osteopath release the pressure so that my knee would stop feeling like it was going to explode and now it is really sore and soon it will be better again. Knees, ugh… Am I right?! Fickle joints they are, flimsy and fickle.

    In the meantime, I’m waiting for my brain to wake back up, which isn’t going to happen today, which I can prove because I’ve had three coffees and it hasn’t happened and it’s after 4pm and that’s just basic science.

    As for how the ketamine has affected me? CRPS pain is still low. It’s still present and bouncing around as the weather changes and sorer in some moments than others, but overall the peaks are lower than pre-infusion. If things keep trucking along like they did after the last time, the pain levels will stay low and maybe even drop further once I get over this fatigue.

    Aside from a few strolls around the block, I haven’t been up for much movement yet. My brain and body wake up a little bit more each day and as I regain my powers, I will be using them to focus on physical therapy. The ketamine gives me a little break from astronomical pain levels and the best thing that I can do with that break is strengthen my body to better cope with future challenges.

    Love & Recovery Snoozes,

    P.S. In very sad other news, I had to say goodbye to my dear little Lucy-beagle a fortnight ago. It comforts me to know that she’s no longer in pain, but God damn do I miss that sweet little face with the floppy, floppy ears. I keep expecting to see her where she always used to sit… The missing, it hurts my heart.

    20140118 Lucy

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  • When the Ketamine Worked

    Dear Audy,

    Do you ever get stuck on trying to do something and then you can’t do anything else until it’s done, but then it never gets done and you realise that you never really had to do it in the first place?

    No? Just me then…

    I’ve been meaning to tell you about my second ketamine infusion by recording a video blog. I haven’t quite had the energy over the holidays and so anything else that bumbled across my mind that seemed worth blogging about got pushed aside into the “after the vlog” pile.

    The day before yesterday was finally the day. I was feeling bloody awful as I’ve spent this past week muddling through a heap of seasonal flaring. I thought I’d be productive in spite of the pain and so I painted on a less blotchy face and sat down in front of the laptop.

    Once there, I tried to figure out how to talk like a regular, comprehendible person. It took several takes before I got my vlogging mojo back and started to make sense. I really don’t spend a lot of time conversing these days. It can be hard to remember things like “joining thoughts together” and “stop talking when it’s not adding anything”. Eventually, I got it done.

    I mean, I think I did. I couldn’t manage to watch all the footage play back at me. This isn’t one of those insecure, “my own voice on tape” things, it was just because the whole damn lot of it recorded with the audio out of sync. I have no idea why. So, naturally, I gave up and let the delete button have its way.

    I suspect that there is no why. I think this is just the fates mocking me for my silly little “nothing happens until after this vlog” stunt. If I tried to record something now, it would probably work just fine.

    But I am done with that. There will be no vlog! Haha! Take that, mind block. Look, I’m just going to straight out tell you what happened in, like, a few paragraphs or something. Read on, sucker!

    In my last post (before the mind block), I mentioned that I started seeing a new pain specialist who was willing to try another ketamine infusion with me. I went in for a five day infusion in October last year.

    Getting infused. Like a boss.

    Getting infused. Like a boss.

    The whole experience was a completely different one to that horrible infusion that I endured a few years ago. It was only half as long and the drug was administered much more slowly than the first time around. I didn’t have any crazy hallucinations or nights of ridiculous nausea to get through. I was mostly fine, other than feeling a bit out of it because of being on drugs and all.

    My pain levels dropped slowly but steadily. By the third day, I was a few points down on the pain scale. I then had a second drug added, this one was lignocaine and went for 12 hours, in a separate infusion point to the ketamine. While both drugs were running, the pain dropped to the lowest I have felt in years. It was both utterly amazing because of the relief, but also incredibly shocking because I could clearly realise just how much pain I deal with on a daily basis. It’s….a lot.

    Double infusion.

    Double infusion.

    Following the infusion, I didn’t have any of the almost immediate, painful reactions that I had the first time around. I remained really calm. My pain levels were low, even though stormy weather had my hands and feet swelling and sweating like they do in a full flare. That was one of the strangest things, to feel the symptoms of a flare without the all consuming pain that usually overpowers my perception of them.

    I spent about a week resting and recovering. My pain levels fluctuated a lot during that time and it was hard to tell if the ketamine was going to provide any lasting relief.

    Soon enough, I was able to start moving around and building strength again. I was pleased to discover that my general level of pain was about 2 points lighter than before the infusion. This might not sound like much, however, for me it was the difference between never being able to do anything and being able to walk/cook/drive in small but useful amounts.

    I put all of my pain rehabilitation training into effect and paced out my activities throughout the days, slowly attempting to improve and increase what I was doing. As well as a slightly lower pain level, I found that I needed less recovery after activities than before the infusion. Instead of going for a walk and then being stuffed for a week, I could go for a walk, rest the next day and then go for another the day after that.

    I’ve continued working each day and doing what I can to improve my strength. My abilities started to decline a little around NYE and I have been dealing with increased flaring since then. I think that this has little to do with how I am managing and a lot to do with the Melbourne weather being unable to decide whether it’s going to do Summer or not.

    Even though I am back in a bit of a flaring rut, I am still feeling positive. My mood has been surprisingly stable since the infusion. I found a lot of clarity in feeling the pain melt away whilst on ketamine. Living with a high level of pain all the time can get confusing and sometimes, even I start to wonder if it’s really as bad as it feels. Having the pain relieved for a bit and then returned gave me a really clear perception of just how much I am usually dealing with. All of a sudden, I was able to be a little bit easier on myself for not having achieved anything in the past few years other than survival.

    It’s only about three weeks until I will go in for another 5 day infusion. Knowing that there is relief up ahead is making coping with the recent bout of flares a lot easier. There is the possibility that the next infusion will have a cumulative effect on the first and bring me even more relief, which is what I’m hoping for. However, even if the pain relief is not lasting, just knowing that I can go and have a little break from the battle I fight 24/7 creates a kind of mental relief that is well worth going to hospital for.

    And so, there you have it. Ketamine infusion the second: described. Mind block: demolished. Achievement unlocked!

    I can officially blog about whatever I want, whenever my hands will let me, PHEW!

    Love & The Art of Observing Your Own Crazy,

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