Now someone with MS may understand the title straight away without putting much thought to it. In the MS world we often use the terms for cognitive issues,brain fog,cog fog a more common one and cloudy head. I am sure there are more terms but i can't remember,as my heading states "my fuzzy,cloudy brain.
For those that are in the unknown of this title,let me explain in a simple way. I will not go into the science part but more my everyday life struggles with my brain.
As this is one of the most common symptom of people suffering from MS,it's also one of the frustrating ones. Now i cannot speak for everyone,but when talking to my MS chat groups or reading articles it seems this symptom is one that pops up a lot and also seems the most challenging.
Now i can explain my experiences but not everyone will experience it the same way,although many may identify very well. For me the heat and fatigue are triggers to my fuzzy brain. Also an overload of information or noise all at the same time can trigger these issues.
Basically my brain gets tired and my electrical signals in my brain do not travel very well from point A to B. Sometimes they get lost on their way or are very slowed down. The coating of our neurons are damaged due to MS and this causes our signals in our brain to backfire. This also causes slow thinking,memory issues and receiving information becomes more difficult. Now i am not a scientist and my explanation is very very basic,but you get the idea on a basic level that is.
I suffer from this on a regular basis and some days more then others. I will be in a conversation with a group and i just can't keep up sometimes because the conversation is going too fast for me. This can also happen when i watch a TV show and especially talk shows,that i just cannot keep up.
For me the worst thing about this is when they get mad, or do not understand that i am struggling trying to hold the conversation and my brain is too tired for me to hold it all together and i forget or i forget some parts of it. I would hear the" you are not listening" or i just told you" kind of attitude .
This can be very frustrating and embarrassing too. Some days when it's bad i try not to say much at all.
Not many people understand because again this is an invisible symptom of MS. Even the ones that do understand,say they understand but their actions speak differently.
Being in big crowds cause a lot of cog fog and trying to hold up a conversation is often challenging. I think the reason for me is because i get tired of noise overload,especially in smaller spaces or at events with loud music. I just get so full in my head that there is no more space for any extra information. My days of social events have become a worry instead of joy.
I just wish that on the outside world people would not judge so much. We believe that because someone is young and looks healthy that they cannot have memory issues or confusion. Oh did i not mention,confusion is also a part of this cog fog,brain fuzz we have. yes we can also get confused when our brains are not on sharp form.
It's not only the older ones that can struggle with these issues but also the ones that have MS and other illnesses out there.
If only there was more empathy in the world.
To my MS readers i would love to hear your story or tips of how you manage this.
Please follow me :)
Best,
Mas x
4 comments:
I have so much trouble with anything requiring executive functions, eg planning, sorting, organising, prioritising, making decisions. As cog dysfunction and fatigue have been my biggest daily symptoms for at least 25years, I don't bother trying to apologize to other PwMS when I lose it.
You say it is very common yet it's PwMS who empathise least. Instead they say "Oh I have memory problems too" as they run households, go to work, organize events. I can't even look in the fridge and pull a meal for one together under 2.5 hours. However I now have a specialist dementia worker who helps me keep my shit together. And laugh while we do it.
Hi judy
Sorry to hear your struggles:( cog fog is not fun.
It’s a common symptom of MS but not so that it effects the life of ones persons life. In general it’s a low percentage i agree.
It sounds like you have the higher percentage and it must be so hard with your daily life :(
My cog fog is intermittent and some things trigger it more like heat or fatigue.
I am so sorry you have to deal with this. I can agree tgat people will always compare themselves to you because they try to identify. Unfortunately if they don’t have MS it’s not the same thing.
Do you find your specialist helps you?
Best
Mascha :)
Thanks for your empathy, Mascha. Yes, my cog dysfunction is in between mild and severe and I was filmed by MS Queenslad for a DVD to inform PwMS about how it affects every day of my life and how I try to manage it. I am not good at learning new things but I have had to learn how to make new habits like putting every event, reminder, goal etc in my diary (with different loud alarms) and every fact I learn about my friends goes in Notes under their contact information, and hopefully I notice that e.g. they have been sick if I ring them.I have a chart showing regular activities on my toilet wall. Anything I think of doing, I have to do it THEN or else it's gone out of my head in minutes. (Very easily distracted by a sound, dog barking, anything) If I am using my stovetop, oven, or running water, I put an alarm on or I forget, which causes accidents. Least distressing symptom now is my atrocious memory which I have learnt not to cry about but laugh. I am so used to it, if anyone is upset about it, I laugh and think "well, it's their problem, not mine".
If yours is only mild (lucky you), try not to let it stress you. Instead, and I know from experience that it's hard when it happens, learn to laugh about it, but make sure non-MSers are made aware that it's the bloody MS not you. 😃❤️
I believe mine was my medication of Neurotin. It completely made my cognitive issues worse and now that i sm medication free it’s occasionally when i sm tired or over heated. Sorry about your struggles though :(
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