Trip to hell

I’m sorry I haven’t written for a while, but life went a little crazy for me and I simply stopped doing almost everything. When I last wrote, I was full of beans and convinced that I had found the answer to the intense cold I was feeling. Ever since winter arrived, I had felt nothing but cold. Not the normal cold that is linked to the outside temperature, but a far more intense and at times, even painful cold. It didn’t make full sense to me, but I was colder than I had ever been this early in winter, and I knew I was driving Adam mad with my insistence that there had to be a draft, a vent left open somewhere, or that sealant somewhere had failed. There were a few things about it that were a little odd, but I just kept brushing aside, something I now know was a huge mistake. It didn’t seem to matter where I was in the house, including in my bed, my legs and my back were always cold. At times, it was so painful that I found myself on the verge of tears and unable to think of anything else. All I wanted was a heat source, one that was close to my legs, and my invention had to be the answer for my legs, my back, well I was going to deal with that one later.

The first couple of days that my heater was in place, I was so pleased with it, that I ignored what was happening elsewhere. After weeks of feeling nothing but cold, that warmth around my legs was magical, even though it was just during the day, somehow, it was enough. Then came the first night when I couldn’t bear for Adam to remove my socks. The night before, my feet had been so cold, that they woke me several times as they had actually become painful. I thought that my socks would be enough to make the difference, but they weren’t. That night was the first that I added my dressing gown over the duvet, trapping just that bit more heat as the cold had spread right up to my hips. It was also the night when the cold in my back jumped up from vagueness to intense. The worst of it was right down my spine, fading slowly towards my sides. Just as oddly, and as isolated, were my hands, somehow, my arms felt fine, but my hands were just as frozen as my feet. The longer I lay there, the more I was aware of the fact that when the cold was at it’s worst, my skin was burning. In addition, in my hands and my feet I had sharp tingling, yet still, I was missing the clues and blaming it all on the change in the weather.

On Thursday night things were so bad that I was up either 6 or 7 times. Each time it was the same thing, my body was telling me that I was freezing, and each time, I made some adjustment of some sort to my covers and clothing. It was one of those adjustments that actually managed to get me thinking, and to realise that it was actually impossible for the temperature change outside, to have this effect on me. I used to have thermometers in almost every room, but now, we only have two and of them, only one that I trust. I had actually that afternoon ordered a couple of new ones, as I couldn’t make sense out of what was going on. Our home has never dropped below 62 degrees for as long as I can remember, and although this is winter, according to the weather man, it really hasn’t been that cold out there. We’ve only had three nights below zero, so far. I had added two layers of clothing over the duvet trying to trap the heat and when I woke, I was still freezing, but I was also sweating buckets. Not possible, not right.

Friday morning found me still frozen, tired and weepy. When the district nurse arrived she knew almost straight away that there was something wrong with me, and when we started to chat, the tears flowed. Overnight I had pieced things together, thanks to something that happened while I was once more trying to sleep. Almost my entire body, piece by piece, started to burn and tingle. I wasn’t cold, what had been happening to me over last few weeks, was all down to my nerves and now, they were working flat out. I had already thought about calling the doctor, but I really couldn’t think of any drug that I wasn’t already on, that would help. The nurse convinced me that calling was a good idea, as there might be something that both of us didn’t know about, so I called.

Adam picked up the prescription as soon as he finished work and brought it home with him. I knew Pregabalin wouldn’t work immediately, but I honestly did feel a change that night, a good change. It hadn’t gone but the most severe effect seemed to be dampened down. Living with PRMS means your nerves have the right to do whatever they want to. I’ve gone through spells of unexplained pain, pins and needles and so on, but never so severe, and never so well disguised as something totally explainable and believable. I know from what the doctor said that it would take time, several days before I felt the full effect, but it was just so good, to not have a searing line right down my spine. Until you have lived with something like this, you have no idea, just how it can drive you into madness. I have spent the last two weeks, doing nothing but adding layers of cloth and searching out anywhere that there what the slightest chance of a little bit of warmth, including sitting against the oven, after Laura had cooked my lunch. Somehow, the change in weather conditions had triggered the whole thing, then, my body just did the rest. At the worst, I couldn’t think clearly, move or even make sense of what was going on around me, and it pulled me down and down until I had become a blubbering wreck. I just hate to think what would have happened to me, without the drugs that are still slowly improving things day by day. I can’t wait for the day that I wake up, and I actually feel the 64 degrees that my new thermometer says our house is on average throughout, and the what should be, a glorious 74 degrees, right here at my desk.

Please read my blog from 2 years ago today – 22/10/2014 – Please stop

I had my shower yesterday, after Adam reminding me in the morning, I don’t think I had had one for a week, but I can’t be sure. It was one of those odd showers, where the water was just the right temperature and I had managed to set the shower head to the exact point where water falls on me without……