Tue, 19 Dec 2017
I was going to apologise for the irregularity of my blogs recently. I still love blogging but it has become a lot harder for me in the last few weeks maybe months. However, then I realised that although an apology may be the polite thing to do, I am blogging about the reality of “Chronic Life”, and this is the reality.
The reality is I couldn’t finish the second part of my blog that explains why I haven’t been blogging. I can’t finish it because I cannot concentrate for long enough. I couldn’t finish because I knew exactly what I wanted to say but I couldn’t get it from my brain to paper (or computer screen in this case). I couldn’t finish because I’ve been unable to distract my attention away from my pain.
In the last two months I haven’t gotten myself to sleep before 4.00am. I am exhausted. If you know me well then you will know I tend to sleep into the day. However, this does not mean I am any less exhausted, this doesn’t mean I have caught up on my missed sleep. It means that despite already being completely exhausted when I’ve gone to bed, I have reached a point much further away from exhaustion after trying all the tricks they teach you when you have Chronic Fatigue; plus all the ones that tell you not to use but do come in handy. Unfortunately I cannot think of a word for this point so, I will just refer to it as ‘that point’.
When you are chronically ill and a sufferer of chronic pain it is likely that you also suffer with chronic fatigue (apologies that was a lot of chronics but hey you might understand now). When suffering with a lot of pain and fatigue it’s common that you suffer with something we call brain fog. Brain fog is exactly what it sounds like, it is a foggy brain. Brain fog can appear in different severities every day. Every hour if I’m honest. It’s a frustrating side affect of chronic life. Brain fog can make you forget what your saying as you’re sa…
Brain fog can absorb you. You forget what you’re doing as you’re doing it. You say the same thing 5,6,7 times within 15 minutes. It means you walk into a room and straight out again because… well, you don’t remember! Brain fog for me whilst writing usually involves thinking of a sentence or more specifically a certain word but not being able to actually remember it or how to spell it. It’s like the word is sat right at the front of my brain and every time I reached to grab, to use it, it moves. It’s almost like a claw game at an arcade it’s there, you see it, you want it, but you just can’t have it (whilst re-reading this blog I’ve realised it’s a lot like seeing a present under the Christmas tree with your name it but it’s not yet the 25th December).
There are many symptoms of brain fog and I am sure I won’t be able to remember them all! However, for me some of my other symptoms include stuttering as I speak because my brain can’t keep up with my mouth (although I guess when you talk a lot that can happen). I stumble over my words as I try to put together something that resembles a sentence. It also means that it can take me quite a long time to take in information. The amount of information I am able to take in and understand really depends on the day, hour and minute. It means I am unable to concentrate for long. That includes when writing my blogs, when friends or family are talking or telling me a story, when I am watching the telly or a film that requires a fair amount of understanding.
The frustration of brain fog is enormous. I can explain this to you but I’m afraid it’s quite possible that you still won’t fully understand. However, I’m going to try. Imagine the most pain you’ve ever felt. Now imagine that moment in your life when you believe no one else could ever be as exhausted as you are at that moment. Put the two together, then imagine your sadness, frustration and anger as you can’t properly put a sentence together, or finish that document for work, uni or school.
*I’ve had a light bulb moment* Imagine that feeling when you’ve lost your keys. You’re running late, you have a thousand and one things to do, you haven’t slept properly in days and you’ve just stubbed your toe on the stairs whilst looking for your shoes. That is the frustration and the ‘why me’ feeling that comes with brain fog.
Now you might wonder why am I blogging now? What’s different? The answer… nothing. Absolutely nothing is different I am still in an enormous amount of pain, I am still exhausted but today I decided to work with my brain fog instead of against it. I have written this blog post with a rough idea of what I want to talk about but without any real solid basis. It means that I don’t get frustrated and give up when I can’t remember exactly what I want to say. You may call me impatient but when you live with this every day it’s easy to get sucked in and give up (although by this stage in the game there’s a part of you that just can’t quite give up, given how far you’ve gotten).
It has gone better than usual however, believe me when I say it’s not been easy. In fact whilst I am writing this sentence I realise that I had an idea of something to say and I forgot to note it down before I forgot. So to those of you that say I should make notes, believe me I try. I re-read the first two paragraphs which came to me quite easily 8 times in 10 minutes. I have re-corrected those paragraphs several more times since then. I seemed to have skipped out every other word or so. Even after correcting these paragraphs I have had to go back to do further corrections because even whilst correcting my mistakes I forget what my mistake was and how I planned to correct it.
Below you will find a screen shot of my notes page, with a list of some of the words I miss wrote. It’s a short list, not because I didn’t make mistakes but because I forgot about my list. It’s a little like writing a to-do list that includes write a shopping list and then losing your to-do list before you write your shopping list and then standing in the middle of Tesco with absolutely no idea.
I’ll be honest, perhaps a little too honest, but when I opened my web browsers to write this post I couldn’t remember the name of my own blog let alone the name of the site I use.
You may think ‘well, she’s just a little forgetful’ or perhaps ‘well, she’s just a bit slow and stupid’. I am forgetful, aren’t we all? I do put the majority of this down to brain fog and we are all a little slow sometimes. However, I say this with complete confidence, I am not stupid. I have the GCSEs to prove it and an Extended Business Diploma, as I used to joke with my mum after someone would assume I was, because I openly told them I had a disability and they saw my walking stick or wheelchair.
Frequently people become frustrated or impatient with me because I forget what I was saying as I say it. I tell them I need to speak to them but then can’t remember or it takes me too long to be able to get my words from my brain to my mouth.
Therefore, I ask you this, please have a little more patience with someone like myself, or in fact anyone that has obviously had a long day even at 9.00am. As I can almost guarantee that the amount of frustration you feel in that situation, they feel it much more. Whilst also feeling apologetic and fed up.
I hope this blog helps you to understand why it may take me longer than you believe it should take or expect for my next post. I also hope that writing this post in the way I have will help and allow me to write my next a little easier.
If you would like to keep a little more up-to-date with what I am doing then you can follow me on Facebook: The World in my Words. I am trying to remember to update more here!
Also I apologise if you follow me on Instagram, I am currently unable to upload with text and am in discussions with Instagram about this. I will update as soon as I can!
(Oh and I bought my Christmas Tree yesterday, I’m so excited! But I have to wait until tomorrow to decorate it because apparently I’m supposed to share…)