A couple of weekends ago I had another bad spell. When I checked the device it wouldn’t even get to level 1, let alone level 6 that is supposed to be on. So the device is effectively dead. 😮
On the Monday morning I rang through to get a GP appointment. Having been greeted with an automated message saying I was in a queue of more than 30 people 🙄, I persevered and after 40 minutes or so got through. After initially being told there weren’t any more appointments that day for anyone to discuss my “bad back” 🤦♂️ I explained again that it is not a bad back, it is a failed pain relieving device and I am in immense amount of pain despite taking opiates. Suddenly they were able to get me on the call back list for the afternoon, and in fact that was rapidly changed to the morning list. 😀 Imagine my surprise when, little over 10 minutes later I got a call back from a GP – not even just a triage call! 👍
Having explained to the GP that I was having to take more tramadol, and in fact was running out of it, she went through the other meds I’m on and suggested an increase of Pregabalin. We talked bout the brain fog and she said she would still rather I took more of that than tramadol as I would most likely just need more and more tramadol to have the same effect, and Pregabalin isn’t addictive like tramadol. We agreed to just a moderate increase initially – from 150mg twice daily to 200mg twice daily. She also prescribed some more tramadol in case of flare-ups.
I updated the neuro team, and they have prescribed me more of the lidocaine patches. When I picked them up the prescription has changed from 1/2 a patch at a time to a whole patch, with the recommendation being I put them on in the morning for up to 12 hours.
10 days on and the brain fog is manageable, but I’m definitely noticing a difference, and I get drowsy in the afternoon after I’ve been working in the morning. I’ve even managed to fall asleep playing Xbox a couple of times. The lidocaine patches definitely seem to help as I’m more comfortable during the day than at night. I say more comfortable, but that is relative – it’s still bloody painful! At least I’ve not yelped during a meeting yet! Or at least I don’t think I have! 😉 For various reasons I’ve done a couple of almost full days at work this week, and whilst it was really fulfilling from the perspective of the work I was doing and what I achieved, it really demonstrated how sensible it is that I’m still essentially only doing half days. As things stand I’ve got enough annual leave, and agreement from work, to continue that through to the end of March.
My mobility is pretty awful. The chair definitely helps, but even though I got something reasonably light, I still find it a bit of a struggle, particularly once I’ve got tired or the pain is worse. It gives me the confidence to go out when I otherwise wouldn’t though. Last weekend we went away for Ruth’s birthday. While we were having a coffee down on the sea front, Ruth realised she’d left something at the hotel so took the car back to get it. It took a while to get sorted and I was starting to get cold down on the seafront so I went back to the hotel in the chair to meet her. It was only about a mile but it was from Bournemouth front up to the level of the main town, and there is no way I would’ve even considered doing it on foot, but in the chair it was ok. A bit bumpy, and it highlighted just what a’holes people can be when they park vans overhanging 75% or more of the pavement! 🤬
The strange sensations in my arms haven’t been too bad, but I have had a few interesting experiences recently. My left arm just felt dead for a couple of days, and I got pins and needles in my right. It still feels weird in my right thumb as I’m typing this on my phone. The weirdest experience though was one morning last week when I woke up feeling like I’d been laying on my right arm and made it go numb. In my semi-conscious state I went to move to take the pressure off, only to realise that I wasn’t even laid on my right side, I was on my left, and my right arm was just resting down my side. I always worry that I’m pestering the neuro team, but I dropped them an email to let them know that some odd arm sensations had returned, and also to advise them what the GP had said and the change of medication.
I’d had an appointment through for the follow-up conversation with Mr Mundil in the middle of March, but I’m pleased to have been told a couple of days ago that it has been brought forward to the middle of February. 😀