So I have been having fun with my memory this week...we are not particularly friendly at the moment...nor are we on speaking terms...ever since I found myself in the men's toilets at work because I couldn't make out the signs on the door. Yes that is correct...the little lady sign did not make any sense to me and then again neither did the men's....so then I tried to remember id the ladies was the right door or the left....I chose left.....it was wrong.
As the week has gone on I have put milk in the kettle with a tea bag, luckily I didn't boil it, I have left my purse in Morrisons supermarket...TWICE and I have been confused by my own words. It is hot right now, I am not sleeping well and I am probably living a little too hard but I am in my 30's and I will damn well enjoy them! So this got me thinking, although you may find a lot of information out there about brain fog, there is not an awful lot written about CNS (central nervous system) Lupus...so I am going to change this.
What does brain fog feel like?
This is a question I get a lot and to be honest it can be one of two things - embarrassing or hilarious - this is for me anyway and obviously it is frustrating - but mostly for me it is hilarious. Like the time I spent an hour looking for my glasses only to realize that I was wearing them or the numerous times I have not been able to fathom how the taps work to run a bath so I have resorted to filling jugs of water.
Sometimes brain fog can get me down. Like the time I sat outside my front door at home for 45 minutes holding the keys in my hand but not knowing what to do with them. Don't get me wrong, sometimes it can be amazingly cruel. However it is part of my disease process and I embrace it for what it is...something that has given me and my family many laughs along the years. Sometimes it is terrifying. I have woken up at 5am and had no memory of my own home, no memory of my own being...not knowing who you are, where you are and why you are here is something worse than fear, but I understand the integral nature of the disease, so I know that it will be ok. On top of the fear of the fog, it is how it affects others around me. Some people laugh, I know my colleagues did about using the wrong toilet, friends have offered condolences and I have no clue what loved ones think, but I know when I get words back to front or use the wrong words for the wrong items...like currently the sofa is the big brown...that's it, that is its name as it is big and brown....they worry. I don't want people to worry.
Oh and what it feels like....well it feels like nothing...that's right you literally cannot make any sense of what is happening around you at all....there is just nothing.
CNS Lupus and ME
I have very severe CNS symptoms, more so in many ways than any other symptoms. I experience daily nerve pain - the feeling you get when you hit your funny bone - but all over my body. I have many bouts of brain fog, everyday in fact, I get the dreaded lupus headaches everyday, peripheral neuropathy which is tingling in the hands and feet and my legs constantly twitch which is annoying.
Other symptoms of CNS lupus are far more serious, such as strokes, so I am very lucky in reality, I should also make it clear that CNS lupus is not classed as a separate disease in itself, it is part of lupus in general. However in many ways and from hearing many other peoples journeys I am not unhappy that I have mostly CNS symptoms as a lot of my other SLE symptoms are lesser.
Coping with CNS symptoms
How do you cope with symptoms that develop due to your central nervous system? Well how long is a piece of string? The answer is you simply cannot calculate it, you just do cope. The pain for me is the worst part....even worse than the brain fog. As it is due to my nerves it can be completely consuming at times, however I have specific medication to help with this type of pain and I seem to be able to ignore pain fairly well...for the most part anyway. I also suffer with mood problems...I.E Cass can get angry....very angry! Again I have medication for this that helps to combat stressful situations so I can articulate my feelings in a calm way....a lifesaver.
Brain fog is a whole different ball game, but again coping with it is something that just happens....just as my eyes are green, I also have CNS lupus...it's just there. I make lists, that I forget to read, I have trained myself to slowly read things carefully and over and over until they stick, but ultimately I have learned to embrace this quirky trait I have. If I accidentally make myself tea when I wanted coffee and then cannot work out why my coffee tastes like tea....well so be it. In many ways it makes me who I am....the quirky girl who sometimes doesn't understand what in the world is going on!