After dealing with horrendous fibromyalgia pain for most of the last 6-8 weeks, I finally decided it was time to try another treatment. This one involves me going to hospital for 7 days for a ketamine infusion. The hope is that it will reset the way my brain interprets pain and either reduce or eliminate it (for the most part).
Since I was to check in at Wollongong Private Hospital at 12.30pm, we decided to get some lunch at the cafe.
So impressed to find such healthy food available at a hospital as it’s not always the case. It isn’t a vegetarian cafe, but I’d say that makes up 90% of the menu.
Kevin and I both had the three cheese lentil triangles and the whole meal was amazing.
We then “checked in” and were sent up to level 3 – the medical ward. My room was still being cleaned so we waited in the patient lounge.
Of course I wasn’t that surprised when told I had one of the only two shared rooms in the ward !!! But I was also assured I’d be soon moved to a private room.
Of course I also got the bed furthest from the window so didn’t get the enjoy the view from it.
The hospital has only been open for a few months so everything is still brand new.
The doc had quite a bit of trouble finding a working vein but got one on the 3rd try.
Then it was time for the treatment to start.
You start off on 2ml/hr, increasing by 2ml each hour. Obs are taken every hour until you reach your max dose, which you then stay on for 7 days.
It was pretty hard to get settled into anything (reading, watching TV,etc) so I just chatted with my roommate, Beverly, who was also having her first infusion.
The food here (at the least the vegetarian meals) were all delicious and I loved everything except for the scrambled eggs at breakfast).
Funnily enough I hardly slept the first night and probably didn’t dose off until about 2am. Time felt really weird and I kept feeling like I’d just woken up, when you’re in that dazed state.
The next morning things got very weird (luckily after Mum & Dad had visited) and I feel like I had a drugged trip (but not ever having done drugs I don’t know if I really did). Then my face started to feel numb, like I’d been to the dentist, and I was slurring my words. This meant the dose had to be lowered. I’d been on 10 and was taken back to 8 and all the symptoms went away. Around 5pm I was taken to my new (private room), where I had this awesome view from my bed !!
The next morning I got to enjoy the sunrise without getting out of bed.
Though Kevin felt he had the better view :-).
My meds were increased again, but I suffered the same side effect, so it was back down to 9.
Mum & Dad bought me these gorgeous flowers.
The doc decided to keep me on 9ml/hr since I was unable to tolerate a higher dose. The rest of my stay seemed to settled into a routine of enjoying the view, having the family visit, eating nice meals, sleeping (though sometimes not the best), and visiting with Beverly who was in a room nearby. I didn’t feel like watching the movies I had on ipad, or even reading, so I did lots of Disneyworld reading/planning.
Unfortunately I had lots of problems with my canula and ended having 5 over the course of the week !!
On my last night I was able to watch the Paris-Roubaix one day race from start to finish (except for a 1-2 nap during).
It went until about 1am and I was so glad I stayed up to watch as it was won by Aussie Mat Hayman.
My last sunrise before I was released just 6pm on Monday night.
It’s still early days but it does seem like the treatment has worked. Tuesday was a bad day, but Wed and Thurs have been great. Only time will tell. Then of course is the question of long it will last. Most people tend to get 6-12 months before it’s back to hospital for another stay.
If you want to learn more about my stay please watch my vlogs –
I love your blog! You write beautifully and from the heart. Thankyou. Plus, your photography is amazing.
Hi, Libby. I feel like it’s been a while! It was interesting reading about your hospital stay. I hope the treatment is still working for you a month later now, and that you don’t need to repeat your hospital stay any time soon. It must be rough to be away from your family and your routine for a whole week.