Thursday 17 September 2015

A blur

The last week has gone past in a blur, not due to its speed but due to the fact I have been barely conscious throughout it. I remember up until my MRI scan (Tuesday) but after that everything is hazy.


I have spoken to people, seen people but have no recollection of the events as I spent last week either asleep or in a dream like state. I have never known anything like this. I have had extraordinarily vivid dreams and I have acted out my dreams for the first time in my life. 



One day last week I awoke to find my bedside telephone placed in the bin. I recall dreaming about the phone being broken and needing to be thrown away. It wasn't until after some hours of being up that I remembered the dream about the broken phone, I checked in my bedroom bin and found the phone in there. It scared me, I wondered what else I had done whilst I had been asleep. Had I taken extra medication? Had I wandered the streets in my nightwear? Who knows I have no recollection of most of the events whilst supposedly awake last week. So I am sorry if you spoke to me last week and I didn't seem my normal self. The simple answer is I wasn't and I have no idea why.



I am particularly annoyed that this happened last week as hubby was on holiday, so my sleeping or being semi-conscious had a massive impact of the time we would have spent together. I have lost count of the number of times I fell asleep on the sofa whilst watching a film or chatting with hubby. I don't tend to nap during the day unless I am having postprandial hypotension episodes and they have been fairly controlled for quite a while now. I avoid carbohydrates and try to eat a high protein diet, which seems to reduce the amount of episodes I have.


Hubby asked me at one point if I was avoiding spending time with him as my behaviour was so uncharacteristic. When I fell asleep on the sofa for the umpteenth time he realised the situation was beyond my control. I assured him I wanted to stay awake, I simply couldn't.


I haven't slept like this since 2007 when I first became ill. Even then it wasn't as bad as what I have just experienced. The sleeping is deeply frustrating but the lack of understanding from others is more so. I'm tired doesn't even begin to explain how I feel. The word fatigue doesn't seem to sum it up either. It can only be described as like a wave that washes over me. It doesn't matter what I am doing, when it hits I am unable to function immediately. My body feels heavy, my legs are like lead and i have to lie down. If I don't lie down I feel I will fall down. If I am supine when it happens, I just immediately drop off. There is no fighting it like you would normally do if you were tired. There is no fight in me to overcome it. I suppose it is a little like being administered a strong sedative, it can not be suppressed, it envelops you, there is no escape.



When I am awake I am barely with it, I am going through the motions. My normal routines exhaust me meaning that I am forced to sleep after just taking a shower and again after getting dressed. Life in this state has not been fun for anyone in the household. Visits from friends have been cancelled and the phrase "I'm sorry, I am just too tired" has been uttered countless times. I hate cancelling, not being able to hold conversations or remembering anything I have been told. My brain has turned to mush.



Yesterday (Saturday) was a cause to celebrate after sleeping 16 hours out of the previous 24 meant I managed to spend the day awake. The first day in the week that I had managed not to have at least 3 naps. I seem to have one day where I feel relatively awake, one night of barely any sleep (I woke up at 1am), followed by several days of being barely conscious. I did try to get back to sleep but just couldn't and I find it frustrating to lie in bed for hours on end, when the time could be used more productively (blog post writing).


Two days on I am back into the cycle of existing on 4 hours (or less) of sleep. I do not feel particularly tired. There have been no naps since Friday however there have been countless bouts of ptosis lasting for hours at a time. There seems to be no happy medium at the moment. Sleep seems to be an all or nothing affair. My health is still in the toilet.

Life seems to be on hold whilst I wait for the MRI results of the tumour (benign) hunt. I have researched ways of lowering my prolactin levels naturally should the need arise, you never know how these things are going to play with the doctors. Despite all the evidence (the medical papers I have read) stating levels over 2000 (mine is 2629) should be treated, some doctors still like to play it safe and not treat. This is mainly when the levels are causing no symptoms, I do not fall into that camp. I have a whole host of symptoms that are causing me no end of problems. Facial hair being my current obsession.

Despite all the sleepiness there was cause for a little excitement late Sunday afternoon when my neighbour rang to tell me that there was a bird of prey in her back garden devouring a wood pigeon. She asked me to take a look as she knows that I love identifying birds, a hobby I have had since I was a girl. It was as we say in Britain, pissing down with rain, yet I didn't care. I got hubby to drag the step-ladder ( a small two step affair) so that I could stand precariously on it and take a nosey over the fence. Amazed I saw a Sparrowhawk (for info / pictures click this link) shredding the unfortunate wood pigeon.

The birds at our feeding station had been suspiciously absent for a few hours during the afternoon and I had wondered if the Sparrowhawk was on the prowl. I knew we had one flying about locally as I had seen it perched on our garden fence one morning. I was no more than 10 feet away from it and was in complete awe at it. It sounds stupid to people who don't understand the thrill of seeing a bird of prey up close (or for me any bird I haven't seen before or in a while). It is a kind of heart stopping experience, you can't quite believe your luck and want to share it with everyone you know. So here I am boring you all with it.

It is the smallest things in life that give you the greatest pleasure. I was feeling very down after spending the week mostly sleeping. The sight of the sparrowhawk has lifted me. 

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