My escapades with the change of drugs reached fever pitch three weeks ago, when I rang up the doctors with a blood pressure of 80/50….The dearest junior doctor had told me or more like made me promise that if my blood pressure went under 90/60, that I’d ring for an ambulance. That would be ridiculous, I would be ringing an ambulance all day, every day and not only is that not practical but the ambulance service is stretched beyond capacity. The pressure is overwhelming and there was no way I was adding to it, when I knew what the problem was… you guessed it! My new drug, Tizanidine.
To be honest, I thought the symptoms would wear off over time so I tried my hardest to stick to it but all I could do was sleep and feel grotty. I woke up frustrated at my inadequacies, and decided to give in and ring the doctors. My doctors are pretty darn good but normally it’s a tad difficult to swing it with the receptionists. Even though they were about to close, when they heard my blood pressure readings, they told me to come in fifteen minutes then they would see me. We rushed down there and happened to see the senior GP who has been looking after me for seven and a half years.
She immediately halved my dose and to say the difference was remarkable was an understatement! By day three of the change, I was singing ‘What a difference a day makes’ loudly in my head, some of which may have come out mid flow! It was like dealing with a completely different me. I could actually begin to do something other than cradle my body, desperate for something to change.
The only problem is that now my dose had been changed, my dystonia had come back slightly. Tizanidine had caused me to have a sleep disorder on top of the sleep problems I had due to the M.E. Monster. I slept throughout the day and was up throughout the night, not getting to sleep until 6am. With lots more discussions with the doctors, my sleeping meds had been upped for two weeks.
After those two weeks, I thought that with Tizanidine being reduced, my sleep medication could be lowered too. I was very wrong. Insomnia hit me hard and again I was not able to function. I do forget to mention that my idea of ‘functioning’ is very different to that of a ‘normal’ person!
Sleep experts say that with a lack of sleep, your body becomes prone to many other diseases. When you live with a sleep disorder, how do you prevent your body from being affected by many other conditions too? The easy thing for people to say is “just make up the sleep” but you can never simply catch up. Maybe, researchers need to do more in the sleep studies of chronically unwell because we don’t want to be any more unwell than we are already.
Being awake all night is difficult because it makes the nights so very long and lonely. Even trying to write means that I have to look at the same part over and over because despite being awake, I’m so severely exhausted and brain fogged that things don’t make sense anymore.
After more talks with the doctor, my medication was changed again, and now after a week of uncertainty, the sleep cycle was broken. I’m slowly decreasing the clonazipan that was upped (I told you, I’m on a right cocktail!) and so far even though it’s hard, I’m getting there.
So that was a very long and winded answer as to why I’ve been so quiet for the past ten weeks. A few days ago, I managed to paint for the first time since August and it felt so good. It really is the simple things that are the most precious. I’m on my way back now, just slowly, listening to my body this time!
