Oh the stories I could tell, if only I could remember them! Struggles with Brain Fog.

Brain fog isn’t just a problem with lupus patients, people with conditions such as fibromyalgia and MS report brain fog too.

So what is this ‘brain fog’?

This isn’t a medical term and is usually the symptom of another condition, such as the ones above. It manifests as: memory problems, lack of mental clarity, confusion, poor concentration and inability to focus. As a result it can also cause anxiety, mood change (low motivation/depression), headaches, trouble sleeping and difficulty exercising. Severity of brain fog differs from mildly annoying to debilitating, one day you can be fine the next day you can’t remember the most common words.

The good news (if you can call it that) is that brain fog tends not to get worse unlike other diseases such as Dementia or Alzheimer's. Brain fog also comes and goes, often raising it’s little head or getting worse during a lupus flare.

brain fog Can't remember taking meds.jpg

With brain fog you forget words, appointments, things on your to-do list, or even why you walked into another room. It affects everything you do on a daily basis and living with it takes a lot of effort. You start to question yourself, did I lock the door or window? (my particular favourite, I go back to check at least twice!). Did I turn the oven/iron off? Have I taken my medication/vitamins? You’re pretty sure you have but it doesn’t stop you questioning yourself.

The simple answer that others suggest is to write things on calendars/planners, but then you have to actually remember to check them and it’s more than likely that won’t happen.

It’s difficult for others to understand and difficult for us to explain it to others. I’ve tested at Mensa standard, but now some days I can’t remember the most basic of words or names. Brain fog is very frustrating, people can’t see that anything’s wrong so we often become flustered which makes the situation worse.

I’m often accused of speaking very quickly, what people haven’t realised, is that if they interrupt me that’s it, I will never remember what I was saying, so I need to get it all out before I forget. As they don’t understand the situation some people say I should speak slower and that it’s a bad thing for me to speak so quickly, then I end up feeling even worse.

Forgetting words or choosing the wrong words is one of the main symptoms of brain fog. I’d be great at the game where you describe words, but don’t say the actual word as I’ve had so much practice doing that.

Can we do anything about brain fog?

Firstly if it becomes a real issue for speak to your doctor to rule any other causes out, they may possibly refer you to a specialist to help.

Become a post it note King or Queen like me! It often works as they’re instantly visible – especially the neon ones. Write things down – the biggest lie I tell myself every day is ‘I don't need to write that down, I’ll remember it!’

Mobile phones are a godsend. I have so many reminders my phone beeps away all day, but at least I have half a chance of remembering things that way.

Try to concentrate on one task at a time, the more you try to do the less likely you are to achieve any of it.

Tell friends/family/colleagues about your plans, they can help you remember. Also try to explain that some days you may have brain fog, perhaps show them this article and say – 'this happens to me'.

Stay hydrated, dehydration seems to make brain fog worse, also eat as nutritious a diet as possible, resting helps, as do relaxation techniques which ease stress.

Physical exercise also helps, I know it’s difficult to exercise when you’re feeling low or have no motivation but it’s well worth the effort, a short walk is better than nothing.

Also exercise your brain – it’s the case (with everyone) with mind and body– use it or lose it. I have lots of word and brain exercising games on my phone which I do at least once a day.

An hour in the life of someone with brain fog.

I posted this on Facebook when it happened to me and sadly it’s happened to me more than once:

Bring towels downstairs to put in the washing machine, put them in and forget about turning the machine on. Eventually I remember the towels, think I should get the downstairs loo towel and put that in at the same time.

Go to get the other towel, notice the cat litter tray need emptying, empty it, then walk out of the loo. Back to the kitchen notice the door to the washing machine is open and remember I was getting another towel. Go back to get the towel, on the way there notice the recycling bag and take it to the bin. Go back into the kitchen.

Stand in the kitchen thinking what was I doing? Wash up a few things in the washing up bowl and try to remember. See the washing machine door open and remember the towel again. Go to get the towel (actually get the towel this time and put into the washing machine) then think I'll just check the washing basket upstairs incase there's any more whites to wash.

Go upstairs, check the basket, no more whites. On the way out of the bedroom notice some clothes that need putting back into the wardrobe, hang them up, sort through a few more things. Go downstairs again and sit on the settee.

After half an hour go to the kitchen to get a coffee, see the washing machine door open and remember the towels. Put the washing powder in thinking I must remember to get more washing powder (hah!). Turn on the washing machine - only took an hour to get to that point so a bit of a result, it'll likely take 2 weeks to remember to get more washing powder and that's if I'm lucky!!

The lesson I need to learn is when I'm doing something go straight to whatever it is (as I said above concentrate on one thing at a time!) and do it. Do not look at anything else and get distracted, complete only the task in hand! If nothing else all the walking round and round and up and down stairs was good exercise so there's a positive side to everything eh?

Angie Davidson