Being tired seems to the great common factor. Ask almost anyone “How are you?” most respond with, “I’m tired.” Everyone is tired. We are all so tired.
When you have a chronic illness, being tired is a little different. Some illnesses can affect attention, ability to focus, and overall motivation. This can then go on to cause mild to even severe depression, as well as anxiety. A lot of these symptoms can overlap. Some symptoms can actually cause the others, and it can be hard to tell what started first, and what is causing what.
Brain fog is a very common symptom for people with EDS, even hypermobility or other connective tissue diseases.
What Is Brain Fog
Brain fog is like not quite being awake, but very exaggerated. It can cause an inability to focus or difficulty having complete thoughts.
I have suffered from (what I now know is) brain fog most of my life, but it did seem to worsen with every child I had. It was as if when the normal lethargy of pregnancy hit me, it just never left after I had my children.
Yesterday, I went to the grocery store with my son, and I had a very bad case of brain fog. I had a list, but I was unable to figure out which aisle had the item I was looking for. I would get to the aisle I thought it was in and just stare at everything, not really comprehending what exactly I was looking at, almost looking through it, like when you’re looking at a t.v. but not actually watching it.
I ended up choosing items based on the colors of the box. The more familiar the colors, the more likely it was that it was the correct item. But with less cognitive awareness. I could not focus at all. My thoughts weren’t able to connect with other thoughts, and even speaking was a chore. I ended up telling my son I wasn’t feeling well, because I was getting agitated at my inability to function. It upsets me when I can’t complete a simple task, one that everyone does every day. I get angry with my brain and body for being so crappy.
Brain fog is more than just being tired, or sleepy. It can cause severe memory problems. Even making lists so as not to forget important things, doesn’t always help me to remember the important thing. Focusing is almost impossible.
Brain fog can come and go as it pleases. It can last weeks or just a day or two. There seems to be no identified, or common trigger for most people, although everyone is different, but some find that their diet has an effect on their brain fog, as well as the severity.
Combating brain fog has become a full-time hobby for me, and here I am sharing my personal coping skills.
Staying As Organized As Possible
I am a list person. However, I am not organized in any way, and I am not one of those list people that has a place for everything and everything in its place. I am an airhead… scatterbrain… space cadet, however you wanna put it, I am an actual mess. I WANT things to be organized. In fact, I actually have the personality that likes things to be neat and organized, I just do not have the energy to start something or my brain fog makes it impossible to get anything finished once I start, or in any order.
I know I just stated that having a list doesn’t always guarantee remembering. This combined with other tactics is how I stay above water.
If I did not have lists posted everywhere, two planners, AND a third planner on my phone, I would get literally nothing done ever. I use the Google list app, Keep to organize my lists. I use it in conjunction with Google Voice when I need to make a list. I just say, “OK Google, make a list.” and it will as me what I want on my list. It is really handy and has a checklist option that I used a lot. You can even set up a reminder to do something or to get something based on your location. For example, if I need to deposit money in the bank, I can set up an alert to go off when I drive by the bank I use. It is a lifesaver!
I also keep a physical, paper planner–or two. I started keeping up a planner when I started taking blogging and my website and online presence more seriously a couple of years ago. I am a graphic designer by trade and started a design business, from which I started forgetting a lot of important things, was not prioritizing things, and was overall feeling very rushed. A planner allowed me to make sure I had everything I needed to do the day, week, or even month before it was due. I write out every task and assigned literal time slots for every task. I ended up getting more work done, was rarely late for any tasks, and I just felt a sense of peace with regard to my online business mixed with my personal life with kids and a house to run.
Timers or Time Blocking
Another helpful tool I utilize with my planners and lists which keeps me from going overboard with one task, (because I can get carried away easily) is setting actual timers for individual tasks. If I only allow 45 minutes for writing, researching, or managing a social media account, etc., I can focus on getting the task done instead of not having a time limit and going way over time, and wasting a large part of my day.
I also use these tools sometimes with YouTube meditation sounds, to help me quietly focus, instead of listening to my bumps and jams, and end up getting distracted with music being an event of its own.
That brings us to the next tool:
Meditation does not have to be a preconceived idea of what you may think of when meditation comes up.
I also thought of it as sitting cross-legged, with my legs crossed, and say Om… that is not the be-all-end-all of meditation!
You can meditate by sitting quietly and thinking about your day(make a mental list while sitting quietly) you can pray, or just read spiritual literature, and you can write in a journal or just some notes. Anything that allows you time by yourself and gets you focussed, can be considered meditation.
I also use a cool site to help get me in the right headspace called Ambient Mixer. There you can create personalized soundscapes using their free audio clips. Some of my favorites that help me study, read, or relax, are Rain sounds, City Street Sounds, nature sounds like the ocean, and my personal favorite, Harry Potter sounds! They have a great one called Gryffindor Common Room that I love. You can even create your own soundscapes for free! Here is one I made of Professor McGonagall’s Office.
Meditation helps me stay calm and focused during the day, no matter what I have planned.
Vitamins & Supplements
If you do decide to take any vitamins, please make sure you have a doctor perform necessary blood work to make sure your body is actually in need of any supplements. I would just recommend getting bloodwork done anyway, to start there and see if you are anemic, or have very low Vitamin D, or something similar. So let’s make that step one, please see a doctor. For the most part, I am going toa assume the people reading my blog basically live at their doctor’s office, and have had the necessary bloodwork done, and have been doing those things for quite a while. If you have not, please do.
A couple of vitamins and supplements that help many people with a quick pick me up or energy boost are B vitamins, specifically B12.
It is very important to have your electrolyte levels tested to see if you are in depletion and may need to supplement it. Many people with EDS experience low sodium and potassium, and have to supplement to keep their blood pressure stable. I have naturally low electrolytes, and have taken a supplement for years that works for me and does not upset my stomach.
Magnesium is one that can help many different issues in our bodies. I use it as a supplement for heart palpitations (my doctor is aware) as well as Magnesium citrate for occasional constipation. I do a soak twice or 3 times a week in magnesium salt (sodium), or Epsom salt, which helps immensely with muscle cramping and muscle spasms.
If you have low iron you may suffer from cold limbs, and it may be difficult for you to warm up your feet or hands. Low iron,(anemia) can also cause lethargy, and contribute to brain fog.
Green tea has been found in some cases to be more energizing than coffee. Sometimes coffee can give people jitters, and green tea seems to not have that effect as often. I have tried green coffee extract, and it has been more beneficial than coffee as far as the energy boost, but it can also cause some jitters. Big-name coffee chains are starting to carry green coffee extract drinks, so it is fairly easy to find.
Of course, you know black bean coffee is one of the most popular pick-me-up, go-to drinks, but so is tea. I have heard good things about green matcha tea, but I personally do not like it. (It tastes like actual grass)
Doctor Prescribed Medications
If your lethargy from brain fog is very severe and hasn’t responded to any other treatments, your doctor can prescribe medications that help with extreme tiredness associated with chronic illnesses. Ritalin has been known to be prescribed to people who have low energy, as well as for people who suffer from ADHD. I might not start out asking for Ritalin exactly, but asking your doctor if there is a medication that can help fight fatigue is a good place to start.
Endorphins From Exercise
Don’t get excited… I am not going to suggest that you go out and try to run a mile or two. I am suggesting though, that taking a couple of minutes a day to move around (if you are able) more than you normally do can give your body a natural energy boost more than anything else. I know a lot of us are disabled, wheelchair-bound, and in constant pain. There are many resources online for people with limitations to get their heart rate up a little and get their body moving in a healthy way.
If you work in an office, maybe take a short walk around the block at lunch, or perhaps you have a dog you can take to the park or play fetch outside, or go around the block with them. Maybe you can set some goals in physical therapy to begin building strength in areas you could work on, and eventually, have a goal of starting a hike a couple of times a month or a walk around a lake. Make sure you clear this with your doctor, as well as your physical therapist, and do not overdo it. Setting goals can help your mood and self-esteem, which can help the brain fog as well.
Maybe your job or insurance offers a discount on a gym membership. You can come up with a plan with your doc or PT to start doing small things, and if you are able, build your way up into more strenuous things that can help get those endorphins pumping. Natural endorphins are some of the best sources of energy your amazing body has to offer!
I started my endorphin/exercise journey. I started by walking up and down my street, some home exercises, and I VERY slowly learned how to run for fun. I was an avid runner for about two years, then had to have a hysterectomy from a massive uterine/vaginal prolapse from… *drum roll** TADA: Ehler’s Danlos Syndrome! I was diagnosed shortly after. My surgery was what my body needed to instigate a flare and start the chronic pain. (More about my story in the About Me section) Unfortunately, I am unable to continue running now due to my joint pain and frequent dislocations. I do know that when I exercise, even a little bit, my energy levels rise naturally. Be careful if do take on a new exercise regimen, you stay away from doing it in the evening, or you run the risk of having issues falling asleep.
Take on a New Hobby
Sometimes finding something you’re good at or interested in but isn’t one of your usual habits, can inspire you, and help with focus and energy. Maybe you can start with getting a beginner’s paint set, and set aside some time to do one of those Bob Ross paintings. You can find endless, easy crafts on Pinterest, and go buy the materials. Maybe you’ve wanted to try out knitting, now is a great time to help your brain stay active, and learn something new and fun. A couple more ideas for new things to do are take a community college course, volunteer at a shelter or a senior citizen facility, you can start a blog about your illness and the ways you manage it, to help other people as I have. You can even start a book and self-publish it on Kindle! If you choose a goal and plan out each individual step to getting it done, you will eventually accomplish something big that you didn’t think you could.
I LOVE Pinterest. I am on there every single day and have found a lot of new interests that I didn’t know I had, blogging for one. I do a lot of crafts on Pinterest and get a lot of great ideas from it. If you don’t already have an account, I encourage you to sign up for free and find all of the great resources available on it. Write down some ideas, and choose a couple that you are willing to start soon.
Sleep is a huge issue for a lot of people with a chronic illness. We tend not to get regular or adequate sleep. We are either kept awake by pain, or awoken by it, or anxiety keeps us awake. You may not be getting enough hours of sleep, or quality sleep, and when we do get the rest we need, it can change how our brain works. Most people need 8 hours of sleep to get by. I personally cannot function on 8 and need 10 in order to feel fully rested, and it has to be at certain times. I can not stay up till 2 and then get up at noon and be fine. I have to fall asleep at a decent hour, 8 or 9 and then get full night’s rest, uninterrupted. Naps are also something that helps me a lot, I am a nap taker.
Start by taking a sleep inventory, or tracking your sleep for a week. I have one made specifically for EDS’ers, available in our Free Resource Library.
Write down when you went o bed, what time you fell asleep, when you woke up, what your dreams were, and an inventory on your body, like how much pain you were in or of you could not get comfortable. Sometimes tracking these things can help you find ways to prepare yourself for good sleep. Track anything that helps, or keeps you awake, such as anxiety levels, activity levels any given day.
The next week you can start adopting things that might help you sleep better such as cutting out caffeine at a certain time, doing a ritual before bed, going to bed earlier, avoiding watching TV in bed, taking a sleep aid an hour or so before you need to fall asleep, or even getting up earlier so that you can go to sleep on time the next night.
Try to get consistent sleep for one week, then note how you feel after that week.
These are some of the things I do to combat my brain fog. I don’t do them perfectly, nor do I do them all all of the time. They don’t always work, but I do try to keep doing these things because brain fog can take over my life. I start to get depressed and start to feel like I am sick all of the time.
If you have any ideas to add to the list here, please feel free to comment below so our friends can have the best chance of combating their brain fog. What works for you specifically?
Hopefully, this has opened up some inspiration for you to take hold of your brain fog. It can take over our lives, and ruin a lot of days for us. Some of us are unable to work or do anything taking too much brainpower, and any tricks to lessening that frustration are going to help us feel better overall on our chronic illness journey!.
Thank-you for reading, I hope you were able to get some good information to help. Feel free to comment and start a discussion on your own experience, tips, and motivation!