K-day six: and now (hopefully) it begins

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Last night I said a very non-regretful farewell to Neville and his load of brain-affecting medication.

After a night where I slept so soundly they didn’t bother waking me for midnight obvs, snored so badly that my poor roomie needed to seek alternative accommodation (stoopid ketamine) and woke with my lower back on fire (stoopid bed), I was relieved that my blood pressure was back to normal.

Usually it is pretty much perfect. On the mid-to-low end of normal. And unchanging, I refer to it as ‘old reliable’. Over the last day or so it’s been slightly high, which caused me way more concern than the nurses.*

But today apart from red eyes and a bit of dizziness, I’m pretty good and ready to go.

Not pain-free. My back pain has gradually started to creep back as they reduced the medication. I’m not overly concerned about that. It’s apparently not uncommon, and I’ve been advised that for a lot of people the effects of the infusion only really start to show truly after several weeks. Also I have noticed that it is taking longer than usual for the pain to start up, which is a definite plus for me.

I look at it this way: I will still get pain that flares after specific things (sitting, being still in any position at all for too long, being sick, tired or emotional, overdoing anything). This has been the case most of my life now and that’s pretty much it.

But it’s possible that a result of regular infusions (every couple of years maybe***), there will be a longer interval between the time that the pain trigger starts and the pain itself shows up.

Least good scenario: over the course of a day it may only add up to minutes. But over a week, that could give me hours more energy, and contribute to my overall spoon count quite a lot over time. If they are spoons that I can give to friends and family then this will be a reasonable success in my eyes.

Much better scenario – and I’ve no reason not to expect this – I may be able to tail off and eventually stop taking my opiate pain medication.

I’m very keen on this possibility. Even if my pain remains the same afterwards as it was when I came in, I’ll have lost nothing but a medication that was never meant for long-term use.

It would be seriously nice not to risk dependence or addiction to these meds, and even nicer to not develop a resistance to their effects. It would make me feel much happier to have them still available as an option kept aside for treating acute pain if I get it, and not have doctors forced to prescribe really serious painkillers if I just have a sprain!

Now all I want is the Captain, a good shower, my home and furred-and-feathered family. I am desperate to get this drug out of my system (so I can sleep again without snoring to wake the dead).

For the next week I’m off work so I can let the ketamine drain away, get plenty of exercise and rest, and give the treatment its best chance to work. I won’t be getting too social for a while, and minimising any causes of anxiety.****

Once my brain is functioning normally again, though, I’d like to consolidate my thoughts and experiences into a personal, one-person-only guide to my experiences with ketamine infusion. There is so little information around – even the hospital here had no guides or written material and what I’ve learned has been gleaned from chatting with a bunch of different people.

So watch this space!

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*They tell me that over the course of a normal day it’s not unusual for bp to change a lot more than we realise. It’s possible that when I normally get it tested at my GP I’m so chilled** that it’s nice and low.

** Because I really like her and also because as a chronic illnesses patient I get way too much exposure to worry about ‘white-coat syndrome’.

***Which means that Keta-lump gets a regular gig.

****I’m looking at you, supermarkets.

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