I’ve never been much of a night owl, and have always needed my sleep. Even as a child I would often ask to go to bed early. Since I became ill my need for sleep has gone off the richter scale! On a weekend if I don’t set an alarm, I can easily sleep for twelve to thirteen hours, and still be tucked up in bed by ten the following evening!
Needing lots more sleep in itself is not a problem for me. My daughters quite like the fact that we all head to bed at the same time, and being single I don’t have anyone complaining that I’m going to bed too early! Fatigue, however is a massive problem for me every day! I like to use the word “fatigue” rather than “tired” because I feel like a whining child when I constantly complain that I’m tired. I tend to use the term “extreme fatigue” to try and express that it’s sooo much more than just being tired, but I still don’t think people really understand how it feels.
It doesn’t seem to matter how much sleep I get, or whether I had my afternoon nap, the fatigue doesn’t go away. My fatigue levels are not always in relation to what I did the day before. Some mornings the minute I open my eyes I know it’s a bad day, even if I’d spent the day before doing very little. I struggle with fatigue to some degree every single day, but some days are far worse than others. On these days even the smallest of tasks seem like massive mountains to climb, and I find everything over whelming.
I don’t have a very good understanding of medical stuff, and only got a “D” in my biology GCSE! From what I can make out, the fatigue occurs because my body is so busy trying hard to get messages through my nervous system, in order to carry out normal activities like moving and walking. Because my nervous system has been destroyed by the Guillain-Barre syndrome the messages reach dead ends, and so the brain has to find them a new route. Imagine driving through Spaghetti Junction and every corner you turn you are faced with a “Road Closed” sign, and eventually after trying several different options, you have to come off and take the country roads! Also my body is constantly trying to repair the damaged nerves, which is a full time and tiring job in itself! This is exhausting for my body and consequently it doesn’t have much energy left for anything else! I think this is also why my memory is so bad. Since having GBS I’ve found it increasingly difficult to remember the things I have to do (I now live my life by alarms and post it notes!) as well as things that have recently happened. It’s quite frightening when I have no memory of a conversation I’d had only a few days before, or no memory of where I’d gone. It has taken a bit of getting used to, but I now accept that’s the way I am, and no longer beat myself up over it.
Luckily my children are wonderful and help me out every single day. I also have brilliant parents and an amazing network of friends, who all chip in. Without everyone’s help I wouldn’t be able to live my life as I do. All the things that each person does add up to make a huge difference to my life, and I am very grateful.
Right, time for me to put the kettle on, get out my onesie and park myself in front of the TV with a bar of chocolate… Don’t judge me, I’m extremely fatigued I’ll have you know!!!
Andie Phillips
