By the time I saw my pain specialist in march I was getting too close to breaking point – pain wise, depression and anxiety wise, feeling like I was losing control of coping with life because of all this. I needed a break, a time out, if you will. And my body needed a rest. To read about how my chronic pain journey started, click How my Chronic back pain began … and The second phase in my chronic pain journey …
I brought it up with my husband before my appointment and he was very supportive and reassuring and said just get in as soon as you can. My main goal was to go in for the ketamine infusion (12 days) and hopefully reduce some of my pain related medications. The side effects – brain foggyness, grogginess, tiredness, poor sleep patterns, plus a whole lot more had finally, for the first time in 4 years taken its toll and I had had enough. Initially I wanted out. To try and come off all my meds. But realistically, being in chronic pain and having two early primary aged children, I needed to be sensible and make sure I could still function enough to care for them enough to get them to and from school 5 days a week.
And off to hospital I go
At the end of April I packed my bags and off I went, with a rough idea of what I was expecting. One of which was a private room. However they were very busy and I ended up in a twin room with an amazing 98 year old lady! They told me I could keep asking for a single room for when one became available – but a couple of days in and I was more than happy with my roomie. We both did our own thing and didn’t get in each others ways, as well as having chats and finding a common interest in colouring. The nurses continually commented at how well we ‘worked’ together, and we did. The company when I needed it was great. But we also respected each others space and privacy. And the rooms there are a very decent size – so Olivia could still do gymnastics on my side when they visited, haha.
Going on Ketamine Infusions
I started on a very low dose of the ketamine, which involves a butterfly needle popped into my belly so the ketamine can continuously be slowly entering through to my bloodstream. The ketamine in kept inside a locked case that gets carried around with me everywhere I go usually in a specific made bag or something similar to be able to hang on shoulder etc. made me a bit more tired, especially the days when they increased the amount/dosage. It generally lasts up to 24 hours before they have to change it and the butterfly clip is alternated from each side of my belly each time as the ketamine leaves a red rash type mark on the skin each time. The little machine is checked every hour to make sure it’s continuously going and I am also checked and monitored for my blood pressure, pulse and temperature every four hours. So much fun trying to sleep at night haha …. but nah most of the nurses are really good and quiet.
Time for Injections
Two days in and I had my injections, 10 of them. That brought me some pain after for a few days but then, for the first time, my nerve pain really settled down and I was able to lower my doses of lyrica to the minimum twice a day. (More about the injections here).
This time around I saw a different physio and he was amazing. He explained so many things about the body, specifically the areas of concern to me and we started on a graded walking plan and other/different stretches and exercises to help. I didn’t really get started with this until week two as week one I was having ketamine increased and that makes you a bit wobbly for the first day each time it is increased and the initial pain from the injections lasting until the end of the week. So for the first week, I just did graded walks myself around the ward and down to the garden area on the hospital grounds that overlooks the Brisbane river.
Every Wednesday afternoon, a local artist/art teacher comes in for art classes. I missed the first week as I was getting my injections, but I went along the second week. I was sore and extremely tired that day after waking at 4am and doing two rounds of physio without a day nap but I really wanted to go along. It was pretty cool! The lady was so nice and she brings along a huge variety of art and craft supplies. I started doing a mosaic piece that others would have continued in with weeks after until it finished.
It took a few days but I finally got out my colouring books and pencils and got into uninterrupted colouring and absolutely enjoyed it! I got a few pieces done for my girls which they loved! It was relaxing and peaceful and just what I needed. Along with some day naps here and there also, of course!
The hard parts
There were definitely some hard times, saying goodbye to my girls after a visit – chelsea especially struggled more this time and face timing with Olivia one night early on where she was so upset (after holding it in and keeping it together when they left as Chelsea was so upset) it broke my heart. After that night I had to ask my husband to take their iPads away from them by 7pm so that they couldn’t FaceTime me as it was just too hard on them. So heartbreaking seeing your children so upset and far away and there is not much at all you can do. When all they want is a cuddle from their mum.
I had to sing to Olivia over FaceTime for her to fall asleep.
As much as I missed my family, I really made the most of the time to myself and for myself as I needed that more than anything, for my mental health. I felt like I had been fighting an uphill battle with myself and my girls for so long before that stay that I just needed time to breathe.
Unfortunately I wasn’t able to reduce my main pain medication at the time. For some people the pain relief effect of the ketamine stays within their system for weeks or months. For me, exactly 6 hours after the ketamine was complete, my back pain returned and felt worse after two weeks of nice and mainly controlled. But the nerve pain stayed at bay from the injections so I was stoked about that. A couple of weeks after returning home I was able to reduce my antidepressant med by lowering it one dose. I am very proud of that.
My following appointment with my pain specialist we decided to try changing my main pain medication for my back pain from twice a day to three times a day as it just doesn’t last the 12 hours. To do that we either had to reduce the daily dose or increase it. I opted to try with the reducing first … and I am about three weeks in and it has been hard. I have had to take more breakthrough meds than I would like but at the same time have been doing less so I don’t have to take them as often … so that’s really not helping. I know any changes needs ‘settling in’ period … so will see what my GP thinks when I go for my monthly script and take it from there. I ended up going back to twice a day as it never improved at all.
Chronic pain and illness is a journey
Chronic … also means persistent, forever. This is something that a lot of people forget. There is no ultimate ‘getting better’ … unless there is a breakthrough in the medical field of such illness … but more so treatments and the like to help patients cope better and live more of a fulfilling life.
It’s is continuous … that’s why I call it my journey. And if sharing my journey can help anyone at all … then I am happy.