It has been a week since my ketamine infusion and I realise I have gone rather quiet. I went to ground for most of the week.
Part of that was a reaction to being under close observation for a week. I wanted privacy! I was also exhausted and mentally zonked and I wanted lots of lovely non-snoring sleep in my amazingly comfy bed.
In fact I felt dreadful for several days, and when eventually I had a bit of a fever I realised I’d probably managed to fight off a little hospital bug. Well done my immune system!*
But that cleared up after a bit and so now I can think a bit more clearly about what is happening post-k.
I’m very sorry to admit that I still have ridiculous pain. HOWEVER it is lumbar pain, right about where I know I have a prolapsed disc. That area was pretty damn painful before I went into hospital, and that dates from a lovely day I had in the garden involving a wheelbarrow, a shovel and a large pile of dirt. ** It’s definitely worse as a result of that deeply uncomfortable hospital bed, too.
In fact I suspect I’ve advanced that injury a little more, or even possibly prolapsed the next disc up. Which means this pain is: a) my fault, b) actually acute and not persistent pain, and c) temporary, as long as I keep stretching and exercising and moving enough.
I have a large number of options for dealing with this pain, including physio exercises and anti-inflammatory meds and my TENS machine and heat packs. It’s very nasty, especially first thing in the morning, but it’s not the type of thing that my ketamine infusion was ever intended to deal with.
This knowledge does not stop me from feeling horribly embarrassed about it: like, oh great, all these people have gone through all this hassle and I’ve filled myself up with rather extreme drugs *** and I’m STILL whingeing. What a wuss!
I do feel some pressure to tell people that all this effort has led to a magical cessation of pain. It seems churlish not to.
The truth is, however, a litte bit good and a little bit bad.
The bad: the chronic pains are still there. And I’ve discovered they can get just as severe as usual.
The good: it takes noticeably longer for the pain to kick in, and the increase in pain levels is slower.
The potentially even better: I may continue to notice improvements over the next few weeks.
What does this mean?
If it continues it means that it should be a bit easier for me to pace myself to avoid pain flares. That could well give me more energy across the week to use to spend more time with people I love. Winner winner chicken dinner!
I am hopeful that in a bit I’ll be able to start decreasing my opiate medication. That would be a real success! (But I’m not going to start trying until this lumbar injury calms down.)
If it turns out to have been effective, I will have to go back and get the infusion done all over again every 6 months to a year, according to the doctor at the hospital. That’s not a very attractive thought, but would it be worth a week or two every year if it means I don’t need to take strong pinkillers?
The good part of that would be that I now know what to expect, and how to prepare myself. For example, I know it isn’t, after all, a pleasant week of no pain and lovely floaty feelings. (Not AT ALL.)
Also, I have just realised that the last three or four times I had a really bad migraine, it was when I was in hospital. **** So next time I will ask my GP to prescribe me something that will help before I go in!
Here are my own personal tips to prepare for a ketamine infusion, from a first-timer who is going to be much better prepared next time.
Feel free to pass them on to anybody who you think could use them.
Blossom’s ketamine infusion tips
- Even if the doctor promises you that it’s going to be a lovely restful holiday from pain, don’t be disappointed when it turns out to be anything but.
- Hospital beds are disgustingly uncomfortable. Bring pillows, bring bolsters, bring heat packs, bring anything at all that might cushion the effects of sleeping on a rock-hard plastic mattress that is designed perfectly to prevent you from lying comfortably or moving naturally.
- If your body can throw anything unpleasant at you, it will choose to do so while you are in hospital *****. Be ready.
- When the ketamine levels get higher you will be unable to: talk clearly, follow a conversation, read, see clearly (blurred/double vision), remember what somebody has just said to you. Don’t expect to be able to read a novel or converse nicely with visitors.
- Warn potential visitors of the above. Ask them if they really want their kids to see you stoned off your noggin. ******
- By all means bring reading material of a frothy nature, but also bring plenty of upbeat or light music to keep you occupied when you realise you’ve just spent the last four hours reading a single paragraph and you still have no idea what it was about. *******
- Keep your books/music/conversations light and upbeat, so your brain defaults to happy drug-induced trips and not dark, scary ones.
- Learn the names of all the nurses and other staff. Write them down if it helps. Being able to chat merrily with the staff makes the time go in a much more pleasant way. Also they are all there to look after you and make you well, and they deserve to be greeted politely by name.
- Don’t panic if you don’t walk out pain-free. Remember that benefits can take weeks to appear. Also try to keep in mind that there are lots of options out there and it is always worth trying them out. Even if they don’t work, you and your doctor have learned something from it. Onwards and upwards!
- Take the following week off so you can sleep, exercise and recover. Let the treatment work. And stay hopeful!
* Especially since my over-excitable immune system usually prefers to busy itself randomly attacking bits of my own body; so I like to encourage it when it occasionally successfully recognises the difference between, say, a foreign virus and my own leg.
** Totally worth it I REGRET NOTHING.
*** Or what Darla calls ‘Class A’s’.
**** Dingalingaling! That sound was a penny, dropping.
***** Confirmed by the nurses. Migraines, endometriosis, high/low blood pressure, snoring, sciatica … any way your body can make itself really messily uncomfortable, it absolutely will. Especially if it also badly inconveniences hospital staff.
****** The answer may well be yes, in which case both you and your young visitors may experience a very intriguing and amusing visit. And parents can always use the situation as a good way to put their kids off experimenting with drugs. ‘Do you want to end up like Auntie Blossom? No? I didn’t think so.’
******* This actually happened.