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Michelle posting

I’ve been sitting here off and on for the past few hours trying to think of a topic to write about. Actually if I’m honest I have been sitting here trying to get my brain to form a single cohesive thought. Never mind making that thought into a sentence. Never mind getting my fingers to move in some sort of coordinated effort on the keyboard to form the words into something tangible. Never mind forgetting how to spell simple words like ‘and’, or even that ‘and’ is a word, or how to use it in a sentence. Brain fog strikes again, and I am lost for words once more.

For me this is perhaps the most annoying and disabling symptom that Dysautonomia has thrown my way. Once upon a time I had a brain, I know I did. I have proof on my study wall. Now I’m starting to think that my brain has made a run for it. I’m pretty sure that it is now sunning itself on a beach in Majorca and drinking margaritas, whilst I sit here lobotomized, pondering the fluff in my navel.

Frustrating doesn’t really begin to explain how this makes me feel. My brain has always been the one thing I had going for me. I could juggle complex information with ease. Be it work, academia or a round of Trivial Pursuit, I had it going on. My career choice, neuropsychology, involves the study of the brain, in particular cognitive abilities. Lordy, that makes me giggle now. Suddenly I have strains of Alanis Morissette’s Ironic, running through my mind. (Brain fog had me calling her Alyssa Marionette for the past ½ hour without even tweaking, sigh).

I specialised in working with the elderly. I wrote protocols for managing delirium. I wrote rehabilitation and management plans for various cognitive deficits. I was the go to girl for the most complex and confusing cases. If someone was violent, or had issues with personal hygiene or body fluids, I was the girl who worked out how to manage the behaviour (hmmm on second thoughts maybe I don’t miss work so much). Now on my bad days I can make some of my ex-patients look like Einstein, and that includes the guy who thought using a metal cheese grater to itch his leg was the logical choice (if nothing else my job was never dull).

I know now that I couldn’t go back to the work I was doing. In many respects I don’t know if I would trust myself enough to get it right. The responsibility and consequences involved mean you have to be permanently on your A game and at this point I’d struggle to be the orange girl. I have to accept that particular part of my life is over and I’m onto a new chapter. If I do sit and think about it I have come to terms with not working (and I was truly devastated when I gave up work), and when I think logically about the long hours, stress and politics I don’t know if I would want to go back there.

Even no longer working brain fog and I are in a very unhealthy relationship. Hence I find milk in the cupboard and empty saucepans on the lit gas hob. I forget to wash school clothes or fill in excursion forms. I go to the shops and forget my list. Forget I even had a list and come home with yet another packet of toilet paper to add to the 46 I’ve already brought, but minus the bread for sandwiches that I initially went out for.

I frequently can’t find the words I want to use, so talk a lot about ‘thingies’. Conversely I will say the wrong word and not even realise. On bad days I slur like I’ve just knocked back a bottle of tequila, including the worm. If only. Even reading is often hard as I find it hard to maintain my concentration. I look back at things I wrote before becoming ill and I am amazed that I was so eloquent. I look back at my doctoral thesis and I can’t even follow half of what I wrote, yet I know it makes sense, just not to my befuddled brain. It’s like wading through quicksand and I’m sinking fast. It’s exhausting.

Logically I know why it’s happening. I know that I have the pesky problem of having trouble getting the blood to flow above my shoulders. I know that the physical fatigue I feel impairs my cognitive abilities to no end. But this doesn’t make it better. For me I could put up with the physical symptoms if I still had a brain that allowed me to escape reality. Imagination is limitless and you can live a thousand lives in a thousand universes if you have your brain.

Mind you I do have the insider knowledge for when it comes to managing cognitive deficits. Slowly I am applying these techniques to my life. It’s strange that I never felt any less of my patients for having to use them, yet I have a little voice in the back of my head telling me that using them myself is admitting defeat. I’m working on that one. It’s a combination of my new mantra, ‘physician heal thyself’, and a big mental slap that says stop being so stupid woman and use your dosette box. So far the combination seems to be working.

My lack of brain does explain my love of America’s Next Top Model and Judge Judy (oh I can’t believe I just admitted that. I must learn to think before I write). That big echoing cavern between my ears has a lot to answer for.

I miss my brain.

Maybe I’ll drop him a letter. Maybe we can kiss and make up and he’ll come back home. Alternatively, I’m happy to move to Majorca and share a jug of margaritas together. I’ll even bring the sunscreen. Call me brain. Call Me.

Michelle 🙂

Written by Laura, aimed at all those people who’ve ever made a sufferer feel bad, ashamed or guilty for symptoms- like Brain Fog- that they can’t control.

Thanks to this affliction, I’ve been called dozy, stupid and been made to feel like a pathetic excuse for a human being. I’ve had the anger of others directed at me, as if it’s not bad enough feeling my own frustration and despair.

A lot is said about trust and how it is the key ingredient of all relationships. Well, what about when you can’t even trust yourself? It means living life with a perpetual anxiety. The guilt of forgetting a best friend’s birthday. A nagging feeling that you’re forgetting ‘something’ but you don’t know what… OR the sinking feeling you get in your heart when you get a phone-call asking where you are because there’s some place you’re supposed to be- and it hadn’t even crossed your mind to be there.

If you have never experienced this then just imagine for a second as best you can, what it would be like to have to write everything down because you can’t trust yourself to remember it. To have anxiety about whether you’ve paid bills. To have to double check if you’ve locked doors because you can’t remember. To forget what you’re saying in the middle of a sentence, or get your words muddled up. Using bad grammar when English was once your best subject. Forgetting what you did last night, let alone what you learnt in History, which was one of your favourite subjects. Forgetting even sometimes to EAT. Forgetting so many little things so often that you’re scared of what big thing you might forget. An unpaid bill, a birthday, something important… like leaving your handbag by the side of a road because you put it down for a moment and didn’t recall putting it down (something I once did). Or losing a dress you’ve just bought because you put the bag down and forget to pick that up (again, guilty as charged). Or having to ring up your mobile phone AFTER JUST HAVING TAKEN A CALL ON IT AND PLUGGED IT IN TO CHARGE because you can’t remember where you had it last (I just did that before writing this, actually- but hey, at least I have remembered doing it!).

Imagine living this way and experiencing this often… when you are a grade A, intelligent student with a degree. Imagine experiencing this often and having members of your family treat you with contempt for it. Yelling at you, blaming you, calling you names like it’s your damn fault.

I don’t know what’s worst- not being able to rely on my own mind, not being able to trust myself, or being condemned for it by those who are supposed to love me.

My illness is the thing that is ruining things, not me. Do NOT treat me as if I am to blame. I can no sooner help the forgetful nature of my mind than a diabetic could help their malfunctioning pancreas. People wouldn’t dream of saying to a diabetic “You have ruined my day out because you can’t eat that sugary cake with me. Just keep out of my way I don’t want to have to see you.” So why is it okay to say that to me, just because I’ve forgotten to do something?

I don’t enjoy forgetting things that I wanted to do. I don’t even enjoy forgetting things like chores or things someone has asked me to do. The brain is the most powerful and most precious thing that we each have, what if yours wasn’t working properly and people around you blamed YOU and called you names? Don’t you think that would hurt?

So please, if you know someone with brain fog and you’ve never experienced it yourself- realise this: no matter how frustrating or upsetting it is for you because they’ve forgotten your birthday or to come and meet you for lunch- it is much, much worse for the sufferer. They feel guilty and stupid and frustrated already- it doesn’t help to yell at them or call them names. In fact, it only adds to their despair and frustration and if you care about them, why would you knowingly choose to do that? So please, don’t. Even if you’re angry in the heat of the moment, try to take a step back and be patient and understanding.

Take a leaf out of my boyfriend’s book. He was with me during ‘the bag incident’ when I left my bag by the side of a road. (I’d put it down to put on my coat and scarf). We’d almost gotten home when I realised I didn’t have it and recalled leaving it on the floor. I felt stupid and very guilty because it meant we’d have to walk all the way back- in the freezing cold on icy pavements, late at night (it was New Years Eve) when we were both tired. I told him and he just said “Okay, we’ll have to go back”. Not only that, when we got closer and I was tired from the long uphill walk in the cold, he ran the rest of the way while I sat beside a wall, resting. I hadn’t even explained to him about brain fog at this stage. It blew me away how supportive and understanding he was. I’ve never forgotten it. I still think of it now and am amazed how he didn’t react even slightly negatively. He didn’t call me stupid or complain to me about having to walk all the way back uphill. He even started cracking jokes about it the next day! It became a source of mirth between us.

Attitudes like that make all the difference. All it takes is a choice. So how will you choose to respond to your loved one’s brain fog moments? Will you yell at them and call them stupid and make them feel even worse? Or will you choose to be patient and help them through it, help them to laugh at themselves and feel better? I hope like my boyfriend that you’ll choose the latter.