Living with ADHD & Chronic Fatigue.

Interview & article by Jesse Driessen.
Published 5th September 2024.

Flo lives with ADHD. ME/CFS, Gastrointestinal conditions and Eczema. In this article, we chat with Flo about how they manage their symptoms with pacing, avoiding triggers, and the habits that help to reduce flare-ups. Flo also discusses the difficulty of needing stimulation (ADHD) and rest (ME/CFS) and the problems this can cause day-to-day.

Just to get started do you mind walking me through the main health conditions that you're tracking and managing with Bearable?

The main thing I’m managing is ME/CFS. That’s been my main health problem for about 3 to 4 years. I also have some smaller problems, like I have eczema, I have some gastrointestinal problems. I also have ADHD – but I don’t really manage it with Bearable because I wouldn’t know how.

Going even further back, how was your health before you started using Bearable?

Very very bad. That was when my ME/CFS was the worst It had ever been. I don’t know exactly when I started using Bearable, but I think it was after I was diagnosed with ME/CFS.

I was basically bedbound at the time and couldn't do anything really.

Was that the reason you started using Bearable?

Yes, I really didn’t know at the time what affected my symptoms or what helped. That was the main reason I started to use Bearable, to find out how I could improve my symptoms.

Did Bearable help you to identify triggers and helpful self-management strategies?

Yes. Later on, a little less. But, I have to say Bearable was good for finding the big-picture triggers. It helped me to get a rough idea of where the big pain points were in my behaviour. For example, which of my habits caused my symptom severity to increase later on.

I found it hard to use it as a fine-grained tool. Specifically, to find which foods improve or worsen my symptoms. I wanted to enter very specific amounts of ingredients which wasn’t possible. BUT yes at the beginning, it was very helpful to find out what caused the most trouble with my ME/CFS.

Did Bearable also have any impact on your overall quality of life or your well-being?

Yes, of course. Because I could avoid the things I had identified as triggers in Bearable, that made my overall well-being better.

Before we discuss ADHD and ME/CFS specifically, is there anything else you’d like to add?

Something else that Bearable helped me with more generally was that it made it easier to show the status of my condition to my doctors. Being able to show them the charts or the most prevalent symptoms. That made it easier to communicate with my doctors.

One other thing is that what I use the most at the moment is the weekly report feature. It just helps me to see the general direction of where things are going with my health week-by-week. To see if I have to change what I’m doing this week or even stop what I’m doing. Kind of like an early warning system.

Tell me about your day-to-day experience with ADHD.

I have to say I had my ADHD fairly under control before ME/CFS. Over the years, I have learned how to work with it. For example, I left my normal 9 to 5 job to do freelancing, which was better for my ADHD. So it didn’t affect me that much before ME/CFS but when ME/CFS hit me, it caused some problems.

The one thing is that it’s made Pacing very hard. Pacing is the only thing that really helps me with my ME/CFS condition. But because of my ADHD, it’s very very hard for me not to do anything and to just rest.

I always want to do things. I have so many ideas about what I want to do and I just need stimulation constantly. That makes Pacing very hard.

The other thing that’s hard about ADHD is that I sometimes get this kind of hyper-focus. Where I’m just so into a task that I can’t stop it and I forget everything else around me and forget to take breaks. I’ll even forget to stop when I’m feeling the first symptoms (of ME/CFS) coming and this can lead to a crash.

Because of ADHD, I have always struggled with starting boring tasks or tasks that seem overwhelming (note. This is sometimes referred to as Task Paralysis). These tasks often stress me out and – with ME/CFS – high stress causes my symptoms to flare up.

For example, when I force myself to do these tasks despite task paralysis, I get symptoms much sooner. Especially compared with doing the stuff that I enjoy doing, the stuff that doesn’t stress me out. That makes managing ME/CFS and ADHD hard because I get brain fog and can’t complete tasks.

In general, the very limited energy I have due to ME/CFS makes it nearly impossible to do the things I need to do, let alone the things that I want to do.

Another trait of my ADHD is a lack of self-control. That was always a problem for me. I also had some alcohol abuse history and I think this has to do with my ADHD. Now with the ME/CFS this means I also lack self-control when I’m doing things that I know will cause me to crash later on. Or that will make my sleep worse and – in turn – makes crashing more likely too.

For example, with food, I know stuff that I shouldn’t eat if I want to sleep well. But I do it anyway because it’s very hard for me to control that because of ADHD.

In some ways, Chronic Fatigue and ADHD seem almost like Polar Opposites of one another. Managing one condition forces you to trigger the other condition. That must be incredibly frustrating.

That’s a very good way to say it, yes.

I also have very irregular sleep patterns because of ADHD and – combined with ME/CFS where sleep is not refreshing – I often have to sleep during the daytime. So these conditions really have an impact on each other.

I also can’t really do sport. Sport helped me very much with my ADHD (and other conditions) and it made everything a bit better. Now I can’t do sports anymore because doing it causes me to crash almost instantly (note: This is often referred to as post-exertion malaise or PEM).

The only thing I can do is a little bit of restorative yoga. It helps a bit but it doesn’t help me with ADHD to the same extent as the weightlifting or jogging that I used to do.

Do you mind telling me a little bit more about kind of your day-to-day life with chronic fatigue as well?

At the moment, I would say my symptoms are moderate to mild. This is because I currently have the opportunity to not do so much. My wife is very caring and my parents also support me at the moment.

My day-to-day life is that I sleep as long as I can. I often wake up way too early and with way too little sleep. Then I start planning my day look into my getting things done system and start doing the things I have to do. I do that until I can’t anymore and that’s about one to two hours a day.

You mentioned that you were using pacing for chronic fatigue?

Yes. That’s the most important part of my management of ME/CFS. I do pacing mainly by using a Garmin watch and by monitoring my heart rate. When I do anything, I make sure that it doesn’t cause my heart rate over 106 beats per minute. When my symptoms are more severe, the limit is 90 beats per minute. I think that’s what has helped my ME/CFS to become moderate.

Is there anything that is helping you to manage both CFS and ADHD?

I don’t know if this counts as a treatment but I bought a steam deck for gaming because that’s an activity I can do lying down and that satisfies my need to do something with my ADHD. It also helps a bit with pacing because it enables me to lie down and to be less active.

That’s awesome, what games are you playing at the moment?

At the moment, because my symptoms are only moderate, I’m playing more on my desktop but the last thing I played on the Steam deck was Vampire Survivors. It doesn’t take a lot of energy but it also keeps me stimulated which is good for my ADHD.

I have some other some other self-management habits as well.

I do restorative yoga with the DownDog app because that satisfies my ADHD. I started with trying yoga videos on YouTube but that was mostly almost always the same stuff over and over again which wasn’t good for my ADHD.

DownDog is great because it changes up the practice each time and that works really well for my ADHD. You can also set how long you want the session to last according to how feel that day. I’m really happy with it and I think it helped me to stay as active as possible with my chronic fatigue condition. That’s basically the only physical activity I can do.

The other thing that helped is yoga nidra. That’s another conflict between Pacing and ADHD. I can’t just lie down and do nothing, that’s basically impossible for me to do. It was only possible when my CFS was at its worst because then I couldn’t even play games or listen to something. All I could do was just lie down and do nothing because it was physically impossible to do anything.

Now that my ME/CFS symptoms are moderate, I always need some stimulus.

Yoga Nidra provides that by giving a guided meditation and it also just really relaxes me like nothing else. I tried normal meditation but that didn't work as well.

How many of these things were suggested by a medical practitioner?

Pacing was the only thing mentioned by a medical practitioner and drugs, of course.

At the moment I’m only taking a prescription medication for my sleep issues and that’s having a positive impact. I think it helps with my sleep. At the beginning really helped me sleep but since then I’ve also had times when my sleep was horrible regardless. So I’m just taking it because I’m afraid of how my sleep will be if I stop taking it.

I also took another medication for a year and a half but it stopped working after a while and my doctor and I decided I should come off of it. They’ve recommended other medications since then but I have to admit I’m a little scared of drugs that can have side effects.

I’ve read that some of the ADHD medications can make your symptoms worse if you have ME/CFS. So because my ME/CFS symptoms are moderate at the moment, it’s not worth the risk.

Before we wrap things up is there anything else you’d like to recommend to people living with ME/CFS and ADHD?

Another treatment that really helped me – even before my ME/CFS diagnosis – was Stoicism. It helped me cope. It helped me not get depressed or angry or whatever. Even when my symptoms were at their worst, my wife told me that I was coping better with the illness than she did at the time.

I think that was because stoicism made me see my illness from another point of view. It helped me to come to terms with my ADHD and ME/CFS because I can’t really change the fact that I live with them. So I have to accept them and act within those boundaries from now on.

Note. The names and information in this article have been used with the permission of the interviewee.