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.
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,