Life after Guillain-Barre Syndrome ….. Who am I? Where am I?!

Before getting Guillain-Barre Syndrome, I was a very organised, switched on person. Never particularly academic (I left school at 16 and went straight in to work) but I knew what I was doing, and very on top of things. I would almost describe myself as being over organised.  However, in recent months my memory is seriously letting me down. For example the other day…..

Shucks, I’ve forgotten what I was going to tell you! Ha ha only kidding! …. Joking aside that’s what it’s like. The worse times are when a friend tells me they are unwell or something, and then the next day I’ve totally forgotten, and don’t bother to see how they are feeling. I then feel a hundred times worse when they tell me they are feeling better, to which I reply “Why, what’s up?!” I’m surprised I still have any friends left!

I live my life by alarms, a diary and little notes all around the house! My children finish school early twice a week and without an alarm telling me to collect them, they’d be stood at the school gates for an hour waiting for me! I would forget to take my medication if it wasn’t for the alarm reminding me throughout the day. If I don’t make a note to do something the minute I think of it, it will never happen.

My daughters have realised they can use this to their advantage. Having got so frustrated with reminding me that they’ve already told me things, they now decide to remind me of things that have never even happened! Did I really promise to take them out, buy them sweets, or let them stay up late?! The problem is I really don’t know if I did or not. I have to rely on reading their cheeky faces to see if they are trying their luck!

I’m very grateful that those who are close to me understand, and are patient with me. However, I’m sure I must appear shallow and uninterested to other people when I forget the things they tell me. So far, my notes and alarms have prevented me from forgetting important appointments or to action official things, but I’m sure it’s only a matter of time!

At first I was concerned it was my medication causing my memory problems, but having read other people’s stories on Facebook and such like, I understand it is an actual side affect of Guillain-Barre Syndrome. I know it is a neurological disorder, but didn’t realise it would actually cause memory issues. I also wonder how big a part fatigue plays in it. I am exhausted all day, every day. Albeit to different degrees, but never the less I’m always shattered!

As there is nothing more I can do to rectify this problem, apart from manage it with reminders, I shall continue to plod along in my own bubble of oblivion! The plus side to forgetting loads, is that I don’t spend time worrying about them, because they’ve been wiped from brain. Ignorance is bliss I guess!

Sent from my iPad


One thought on “Life after Guillain-Barre Syndrome ….. Who am I? Where am I?!

  1. I had quite a few memory issues for a bit but it has gotten better over time. I do have an alarm that reminds me to take my meds at 2 in the afternoon because I get busy at work and forget. That is until the pain begins to rear its ugly head. There are many times I turn off the alarm and don’t take it right away and then forget, that is until the pain shows up. Keep doing what you’re doing. I wish I could promise things will get better but we are all different and our body’s all recover from this in their own ways. Just know you are not alone that’s for sure!

    Liked by 1 person

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