It was in 1996 that my life changed from me being physically healthy to having ME, and I still have not got used to this life. The mental fatigue is what I struggle with the most, and surviving brain fog is a battle!
In the early years of having ME, I was very unwell, and it hit me very hard, and then I had quite a few years when it was a problem, but I managed to live an okay life despite having ME.
That has changed
Last year, my health became a lot worse, despite putting all the pacing and other coping mechanisms in place, I could just seem to bounce back, and it was flare up after flare up.
Yes I admit that I do things that will not help, I love to get in the garden and do some weeding, pruning or just general pottering about, it is my happy place, and it is important to me that I try and keep that.
I am still struggling one year later, and it is obvious that this is not a blip. I have had blood tests and seen the GP a few times and nothing seems to stand out except for the fact that the ME has gone back to the levels of those early days!
The physical fatigue is hard to cope with, but I do cope with it, the aches, the pains, the spasms are not nice, but I can handle that.
Surviving Brain Fog
Now that is a different matter all together and I have never been able to get used to the mental fatigue, and it is also the hardest thing to describe to people. It is impossible to be able to put into words the extreme mental fatigue and what it feels like.
Long Covid has been a hot topic the past couple of years and there have sadly been a lot of reports of people taking their own lives because they can’t cope with Long Covid and I would put money on the fact that it is likely the mental fatigue, the brain fog that people can’t handle.
Now go back a good few years, and you will find a very different me to the person I am now. I was outgoing, extrovert, I loved going out and socialising, I was happy!
Now I struggle to have people around me, not because I don’t want people around but because the brain fog, the mental fatigue is such a problem that it feels like torture. I can imagine this is akin to being deprived of sleep for the sake of interrogation and I fully understand why it is such an effective technique., it is a living hell, but I can’t make this stop.
It literally hurts your brain, as the mental fatigue gets worse I struggle to even think, looking at a screen becomes a struggle, I lose words because my brain is so fatigued that I cannot function properly. My family tell me that I use the wrong words, or I just stop mid-sentence without realising it!
Writing this, thinking about what to say, feels like swimming through thick mud.
This is worse than the chronic pain, this is what will have me laid in bed curled up in tears, and I am not afraid to admit that.
And it causes problems!
Despite the fact that I have tried my best to explain this to family countless times, I find myself feeling like I have to justify my request to not have people around when I am running low, which a lot of the time now.
We have the grandkids a few days a week, they are Elijah age 9 months and Mia age 3 years and I love having them here, but it beats the crap out of me and so at other times having nothing going on around me, having no one outside me, Donna and our daughter here is important, it is vital.
I find the explanation of a glass of water is the best one.
We are glasses, every day the things we do, the things that go on around us fill that glass up and when we go to bed we rest and the glass is empty the next morning.
If too much goes on, if we are subjected to stress, to challenging tasks, to work, whatever, it risks that glass over flowing, in other words we can’t cope and whatever the result is, be it a breakdown, be it tears, be it us losing our temper.
I start every day with that glass almost full.
When brain fog, mental fatigue is high, it changes everything. I become hypersensitive to sound, to smell, to taste, to light.
I cannot have the TV on and someone talk, the two things are too much for my brain to handle.
Likewise, when I am relaxing in the evening, having things going on in the house is too much. I need complete peace, I need nothing going on. My home is my bubble, it is my haven, my sanctuary, and it feels like an invasion.
An invasion of my home, an invasion of my peace, of my brain.
- I do not like the person this has made me.
- I hate the impact it has on my family.
But I am in a living hell and surviving brain fog is a battle!