Musings and Snoozes

A duvet here, a duvet there

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So the next time I write about being pain free, just tell me to shut up. I am currently curled up under the duvet downstairs, contemplating whether I can muster the energy to climb the stairs to bed. Unimpressed.

On the plus side, I’m in the middle of five days off from work and while I might not be doing so well physically, mentally I’m feeling pretty good. It seems I can have one or the other; I can either feel physically good but have such bad brain fog that I can barely remember my own name, or I can be in uber amounts of pain but feel pretty awake in my head. I’ll be honest, as much as I’m having a bit of a moan here, I do actually prefer the latter. At least I can take painkillers and have hot showers to ease this, whereas there is nothing that can be done for head fuzz.

Still, what’s the point in being ill if you can’t moan?

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Insert generic ‘New Year, New Me’ title here

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I realised I was rapidly running out of January to do a ‘New Year’ post, so I thought I better get on it.

The biggest new thing for me is new medication for the fibro. The Sjögrens diagnosis is on hold at the moment-the hospital felt they’d diagnosed too quickly and so decided to try me on new meds for fibro instead and see how I go. I’ll be honest, the Sjögrens symptoms haven’t gone away, but at least I’ll be back at the hospital in March for an inevitable lip biopsy.

So yes, in the meantime I’m on Duloxetine, which is…….interesting! I’ve never been on drugs that are so fast acting, and promptly spent the first day feeling more sick than I’ve ever felt in my life, followed by pupils the size of golf balls and then being high as a kite. Not the most pleasant feeling while at work! Most of the dramatic effects have worn off a bit now thankfully, though I’m left with a tight throat that makes me feel like I can’t breathe properly. I know I must actually be breathing ok because I’m not going dizzy or passing out, but it’s very disconcerting all the same. I’m hoping it’ll be another side effect that goes away but if not, I’m back to the doctor at the end of the month so I’ll mention it then.

Despite all the crazy side effects, I do actually feel it’s helping though. I’m almost pain free for the first time in years, which is amazing, and for the most part I’m functioning a bit better and having much less brain fog. Providing the breathing sorts itself out, the plan is to increase the dosage to 60mg, followed by 120mg after that, but that’ll probably depend on the lip biopsy in March. For now though, I’m enjoying feeling a bit better 🙂

That said, I’ve had a rubbish couple of days that has kept me off work. Bit of a setback! I don’t know if it’s having changed the timing of my medication (I’ve gone from morning to evening and the withdrawal symptoms are pretty instant) or if it’s just a relapse, but either way, not fun. This morning was the first time in a long time that I haven’t been able to do *anything*. It took me until nearly lunch time to be able to get out of bed, and even that was only out of necessity for the bathroom. That itself was enough to knacker me, and so I spent the rest of the day on the sofa, pretty much unable to move. Ugh.

On the plus side, giving into doing absolutely nothing was obviously needed and I have to remember this sometimes. The hospital are always telling me to listen to my body, but it’s easy to forget, especially when things are a bit hectic. I’m feeling a bit more human again now though, so I hope I’ll be back on track for a bit now.

So there’s my New Year, New Me resolution-look after myself better! It obviously involves all the usual eat less cake, do more exercise, but it basically boils down to putting me first and listening to my body a bit more. That’s the plan anyway. If I can just put down the Jelly Babies……

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