My ADHD Part One: The King Pin

Hello my Zebras and Spoonies! Thanks for coming and visiting me today. I am glad that you’re here.

Today I am going to be talking about my personal experience with Attention Deficit Hyperactivity Disorder (ADHD). It didn’t take me very long to realize that I was going to have to break this diagnosis up into multiple posts. There is just so much to talk about. The diagnosis has that much of an effect in my life.

The first thing that I want to talk about is that this is the diagnosis that has the greatest impact on my personal wellness. I feel this is really important to say because so many people are under the mistaken impression that this disorder doesn’t have a major impact on my life. The impact that ADHD has on my life is huge. If my ADHD symptoms are not well managed then there is no way that I am capable of managing the symptoms of any of my other chronic conditions. This is the king pin.

Even when my symptoms are well controlled, having ADHD means: being late, forgetting things, loosing focus during important conversations, missing appointments, being disorganized, and executive disfunction. It is really important to know that ADHD is probably the most misleading name this disorder could possibly have been given. It isn’t a disorder of attention or one of hyperactivity despite being called that. We’ve understood since the 1980s that it’s a disorder of self regulation and executive disfunction. I really wish that they’d change the name of this diagnosis to something that would better reflect the experiences of those who are living with the disorder.

When I’m late for a doctor’s appointment, I am usually expected to reschedule it. And that usually means waiting several months before having whatever the issue is addressed. Forgetting things means that I don’t always remember to take my medications. In fact, I would probably miss my medications more often then not if I didn’t have such an amazingly supportive partner. Forgetting things also means missing medical appointments and test dates. Which then have to be rescheduled. Forgetting things means that I don’t always remember to make or bring a list of questions and concerns to my medical appointments to help me cover everything I need to with the provider. And forgetting things means that without that list I’m not going to remember everything that I was supposed to talk to them about. That means making another appointment to get those issues addressed. Loosing focus during conversations means that I don’t always understand all of the information that a provider is trying to give me during an appointment and there is rarely enough time to review or ask questions. That means that I might not be following my provider’s recommendations just because I didn’t know it was recommended. Being disorganized means that I don’t always ask important questions when I am in an appointment because I am not organized with a list or organized in thought.

Get the idea? I often have to reschedule appointments and have to wait additional time to get things addressed because of my ADHD. But it also impairs my ability to effectively communicate my needs and to absorb new information when I am at those appointments. It makes it difficult to be consistent with my care plan because there is nothing consistent about my ADHD brain. I might not even have an appointment because of ADHD overwhelm keeping me from making that needed appointment. All the while, my chronic conditions are just getting worse because that’s the nature of chronic illness. This means that over time, they become more complex to manage and are more likely to become derailed by my ADHD symptoms.

But this isn’t just about being inconvenienced or having to pay rescheduling fees. While those are also issues, the greater issue is that not managing my medical problems well increases my mortality risk. The fact is that someone with ADHD has a shorter life expectancy than someone that doesn’t have it. Research suggests that having ADHD means that you will live 20 years less than those who do not have it. Most of the time when talking about living a shorter life, people talk about the impulsivity and risk taking leading to increased accidents. This is a real factor but there is more to it than that. We have a more difficult time managing our over all health and thus are more likely to have negative health outcomes that lead to death.

Conscientiousness (the ability to consider the manner in which one’s actions will impact the future of yourself or others and thus plan one’s actions according to the best perceived outcome) is the single trait that research has demonstrated to be the determining factor for a person’s future health outcomes, including their probability of death from all causes. ADHD is negatively correlated with this trait. I am not able to clearly imagine or predict the future which impairs my ability to plan my actions for the best outcome. Additionally, I am not able to maintain and organized state of being which also impacts my ability to direct my actions towards a future goal. This all means that it is very difficult for me to choose things to improve or maintain my long term health over things that are presented in the immediate moment.

I think there are somethings that people don’t think about being part of ADHD. Just like every chronic illness: the symptoms will wax and wane, there will be flares, and there are triggers. People seem to think that my level of disfunction with ADHD is a static thing which can then be carefully be planned for. But it doesn’t work that way. There are days that I can plan and keep myself organized. There are days that I can function at a level that almost parallels a neurotypical. Then there are days that I am a complete train wreck and literally cannot get out of my own way. Most of my days are some where in the middle of that. But because the symptoms vary from day to day, I’m always taking on life with a huge question mark in context of how prepared I am to cognitively function during that day.

For me, sleep is a major trigger for my ADHD. If you want to see my ADHD at its worst, come visit me when I haven’t been able to sleep. There are times that I cannot sleep at all and I am awake for more then 24 hours. Those are also the days that all the ADHD stuff comes out in all its glory. Which makes complete sense. Everyone’s brain functions poorly when they have been awake for 40 hours. But that’s the extreme. There are many days that I only get 4 hours of sleep and on those days my ADHD symptoms are more pronounced then on the days that I got 6 or even 8 hours of sleep. Being tired triggers my hyperactivity especially. And that makes it even less likely that I am going to be able to settle down and get some sleep. Ever try to sleep when you’re feeling driven to move? Yeah. It doesn’t work.

But there are also foods that make my ADHD worse. I find that eating carbohydrates, especially simple carbohydrates, in any quantity will increase my ADHD symptoms. The result is usually a burst and then a crush in my energy levels. Caffeine can have the same kind of effect on me. When I consume caffeine, it makes me feel more calm, settled and focused. But as it wears off, the ADHD comes roaring back in with more intensity then when it left. Thus, high amounts of caffeine can be a problem for me. I can also be triggered by the energy levels of the people around me. If there are other people who are high energy and excited then I am going to have more ADHD symptoms. Doesn’t matter what is causing them to have that emotional state. It can be them getting excited about a game they are watching. Could be that a code was just called. Or it could even be that they also have ADHD. Doesn’t matter. Being around that kind of energy will increase my energy.

All of this means that I can’t just plan for my ADHD. First that because I don’t do the whole planning thing super well. But it’s also because the ADHD is a fickle, fluctuating creature that is responding to the environment around me. There are things that I can do to help mitigate the damage and I do those things. However, there is no erasing the effects that ADHD has on my life. And for me, the most concerning effect that ADHD has is on my health. Both immediately and in the long term.

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