Fibromyalgia: what it's like living with brain fog and how to manage it.
One of the most frustrating and debilitating aspects of having fibromyalgia (at least for me) was brain fog. Imaging trying to read a book, getting half way through a paragraph (if you’re lucky) and then realising you can’t remember anything you’ve just read. Even worse, imagine talking to someone and half way through the conversation realising that the whole time you had been talking you thought you were talking to someone else. Yes, that happened to me.
I felt stupid. I felt frustrated. I felt like bawling my eyes out or screaming or both when stuff like that happened (sometimes I did both). I forgot things (I still forget things). I couldn’t remember what I went to another room for and would spend so much time just walking about from room to room trying to remember what I went in there for.
An analogy I used to describe brain fog for me was that it was like the little guy in my brain who was responsible for the filing (and file retrieval) would either go out for coffee and not come back, or was far off in another room. My husband would ask something simple like “have you seen my red shirt” and the little guy would have to come back from wherever he went and register that someone had spoken to me, try and decipher it, and then go back into the abyss to find the appropriate file. In the meantime, I am standing there with my mouth wide open like a goldfish, realising just how stupid I look and getting frustrated. In the meantime my poor husband thinks that I’m mad at him for asking a simple question but in reality I’m mad at my brain. I’m tired. I’m frustrated with feeling like a neanderthal. My ability to make witty jokes is gone because I’m too slow to even keep up with conversations let alone interject with any form of relevant humor. So I’m quiet, withdrawn, look like I hate everyone and get more and more depressed with my situation. A simple question can bring me to tears simply because I’m faced with that same situation over and over again and I know it’s not fair on me or the person who is asking me the question. I have guilt, I have shame and I hate my brain.
Sound familiar? I am not sure the precise cause of brain fog within the framework for fibromyalgia, but I believe that pain has a lot to do with it (you can read my post about pain here). The constant distraction in the mind, the having to fight tirelessly to push through past pain to do any of your normal activities, and the lack of sleep all play their part. I also think that it’s possibly a vitamins and mineral thing. I think that if you’re low in just about anything the brain suffers. I think the brain and the body are working over time, all the time, to try and regain health and that as a result it’s like a computer with too many tabs open and using too much power. Something has to give.
My first piece of advice around dealing with brain fog is to relax. I know that sounds trite and slightly condescending but stressing out over not being able to think clearly makes it worse. So for the short term you need to cut yourself a break (or cut your partner a break, this can get better but it doesn’t happen overnight and they’re already struggling believe me). In further posts I’ll talk about sleep and how to try and get better quality sleep but if you can have a google of sleep hygiene and try and get yourself back into some form of regular sleep routine this will help tremendously. As I’ve mentioned before, cutting out any foods that trigger your symptoms helps tremendously (and regardless of whether you believe it or not, gluten has been referred to as a potential neurotoxin so that’s one thing I think people with fibromyalgia can do to see quick improvements - ditch gluten entirely).
Another thing that you can do is to start meditating regularly. Meditation in this regards not only lowers the stress levels, but it helps to close some of those tabs that are open (if you actually got my computer analogy from before). Anything you can do to give your brain an extra bit of help is a good thing.
This brings me to fats. A lot of people think that going low fat is a good idea when in reality it’s usually a very uneducated, oversimplified and ineffective attempt at weight loss. While deep fried foods are bad for the brain, other fats are absolutely essential for brain health. Think about this: every cell in the body is surrounded by a cell membrane made of fat. The brain itself is made of about 60% of fat. To cut fat out of the diet is ridiculous (and dangerous). If you’re wondering what healthy fats you can eat that will improve your brain health here is yet another list:
Oily fish (salmon especially)
Avocado
Nuts
Seeds (eg: chia, flax)
Olive oil (fresh, over a salad -yum)
Eggs
It’s hard to get fat eating those kinds of fat combined with lots of vegetables and salads. If you can up your doses of veggies to at least 5-7 serves a day you won’t have room for the crap that does make you fat. Make lots of salads, cut up veggie sticks, pre-make your vegetables into cut pieces and store them ready to cook so you don’t have to start from scratch. I will talk about diet in a more extensive way in a further post so I’ll leave that for now but I can recommend a book from a lady called Delia McCabe - called Feed Your Brain. It’s a great book on how eating can really change the health of your brain.
I can vouch for the things that I talk about as you can probably tell, not only am I now able to read again (thank god because studying a bachelor of health science could be very hard without being able to read and retain information), I am also studying, running a business, conversing like a normal person (most of the time and depending on your version of normal). My brain is functioning almost as well as it was before I got fibromyalgia and possibly in some aspects even better. My mood is much more stable as well. I still forget things occasionally but I have systems in place to help me with that in most cases. Sometimes I have a bad day but that’s usually only if I’ve had a lack of sleep, am coming down with a virus or it’s that time of the month. Other than that, my brain is my friend once again - which is a great thing because it means I can make relevant stupid jokes at appropriate times once again, and help people like you get their life back.
This makes me very happy.
Calm - app for meditation