I feel like I’ve just woken up from a coma this morning;
it’s now precisely 13.09 and I’ve just managed to open my eyes. With my bleary, first thing in the morning/afternoon vision, I spy activity in the corner of the room and once I’ve got these hopeless, first thing in the morning/afternoon eyes to work, I see my darling P painting the bedroom wall.
Now P isn’t given to making huge, room changing decorating decisions all by himself so what is happening? Did we discuss this? No, strike that, we probably have discussed this but my Pregabalin-addled brain just doesn’t retain things anymore. Sure, it’s a drug which has helped helped enormously with the management of my nerve pain but also has the unfortunate side effect of causing short term memory loss which obviously isn’t helpful when you were as forgetful as I was to begin with. (Plus, it causes twitching and uncontrollable twitching resulting in many a remote control/mobile phone/IPad/cup of tea being suddenly thrown about the place. Hilarious mostly but not so much when resulting in P being doused in M&S Green Tea!)
The Pain Clinic consultant has worked so hard with me to find a concoction of pharmaceuticals that actually work on this nerve pain so I feel almost like I’m being ungrateful or thankless if I criticise any of them or the meds but this one has caused me big issues. When I finally titrated up to the maximum 300mg x 2 per day, it was as if the switch had flicked over into the danger zone.
It plunged me into intense depression and darkness and I spent 3 days in bed crying. It took a good 4 weeks for me to start feeling anything like human again and whilst I am more stable now, I still have ‘my moments’ (as P calls them) where I struggle.
Once that lifted (thankfully), the memory loss or ‘fog‘
seemed to deepen. I have, in the last couple of months, started keeping a journal to record what I’ve done recently and more importantly, what I have to do in the future. This turned into my new best friend as I couldn’t seem to remember anything, I had to keep checking with the diary to reassure myself that I knew what was happening leading to my new catchphrase “ah, let me check my diary on that and I’ll get back to you”
So what else have I appeared to ‘drift’ through in the last couple of weeks?
Well, there was the kitchen extension actually being finished at last (that was a blur towards the end although that could’ve just been me blocking all the craziness of the last few months out!) my last visit to the hairdressers where I arrived home and thought “oh this is nice” but couldn’t remember how it’d all happened and a new fridge freezer arriving that I couldn’t remember ordering!
Any other side effects?
The ‘twitching’ I mentioned earlier also seemed to increase. It was quite exhausting trying to stop these flaming hands, arms and legs of mine from flailing all over the place. At any given moment, they would swing up or down and fling themselves around which was annoying to begin with but having had this on my last increase of the drug, I knew it would eventually settle after a few months so we decided to just treat it with the hilarity it deserved. My attempts at cooking was interesting, extra care had to be taken when handling utensils in case they ended up splattering food all over the newly painted kitchen walls.
Having my toenails painted caused uproar when my leg jerked and kicked the technician causing her to knock over her table and my texting was so bad, I had to resort to using the ‘Speech to Text’ app as I either spelled every word wrong due to my ‘flingy’ fingers or flung the phone to the floor. The most annoying one though was my constant dropping of things which had just leapt out of my hand resulting in my calling out “P, I’ve dropped something” around about 35 times a day. Now I’m not sure which one of us found this particular side effect the funniest – I suspect it wasn’t P………
But whatever the seemingly increasing down sides, it did have ONE most wonderful up side; it has allowed me to stand up for a tiny bit longer which in turn has allowed me to stand by the side of my darling sister with my other siblings at her recent wedding.
I still needed crutches, support from others and me clinging on in turn but that was worth every jerk, every fog, every weird jaw twitch and all the deep dark feelings.
And whilst we’re still not talking about me being able to suddenly spring from the wheelchair crying “I’m cured“, in the world of pain control, any small improvement, no matter how small, is a victory.