Jill Brook: [00:00:00] Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Kai. Kai has severe ME/CFS, Myalgic Encephalomyelitis. She's using a lot of her energy today to be with us, to give us insight into what it's like to have ME/CFS at a very severe level, and so as not to

overuse the energy she has. She's prepared some things to say and I'm gonna try to be kind of quiet and let her speak for as long as that's comfortable. So, Kai, thank you so much for being here today. I wanna just let you take it away.

Kai: Yeah. Well be comfortable asking a few little questions here and there.

Jill Brook: Okay, great. So since most of our [00:01:00] listeners don't have severe profound ME/CFS, I was wondering if you could walk us through an average day for you and what that's like.

Kai: Well, like POTS, ME comes with a lot of different variations and one of them is that people either fit into the insomnia category or the hypersomnia category. And for me it's hypersomnia. This means I sleep too much. I am awake anywhere from four to 10 hours on average. If I'm awake for more than that, it means that I'm having some kind of episode and I'm in serious distress.

My parents wake [00:02:00] me for my pills three times a day. That's also the main time that I can consume calories, which consists of meal replacement drinks. However, my parents leave me snacks, like a pair of cookies to eat, in between my two meals. I don't eat real food anymore. I only eat meal replacement, such as sole source nutrition, which helps get down those thicker, bigger pills.

We switch out my patch medications and I have a bit of time in the evening to have conversation. Occasionally I have a really good day and I wake up before seven o'clock, which is my [00:03:00] dinner time, and I get to do something and often it just means texting with my mom and getting to see pictures of my house plants to see how they're doing, seeing how some of our plant related projects are going and preparing those.

I recently completed a terrarium, so every few days, I would find half an hour to work on completing this terrarium. My parents bring all of the supplies to me and I sit in my wheelchair with my feet up, and I do as much as I can, leaving my bed completely clear so that the second I feel I'm overwhelmed, I can stand [00:04:00] up and then fall into my bed.

That kind of activity together

happens before dinner and then after seven o'clock, after we've taken care of all of my critical needs, we sit and we talk together about what has happened today or in the last week that has not gone well, and what we can do tomorrow or the next week or a month or year to make things go better and

what we can do tomorrow or in the next week or month or year to make things go better. And this often leads to a list that goes to my doctor before the appointments so that he has an idea of what [00:05:00] we wanna talk about this time.

This is what usually happens on a good day. Unfortunately, many days are not good days. I used to have a very regular schedule of slow decline, and unfortunately, a couple of antibiotic pills ruined that for me. Now, anytime I do anything that used to take

a mild day, now becomes a severe day and causes permanent damage. I've had four or five episodes like that since I took the antibiotics in August, and I've gone through periods where I've had seizure-like episodes one [00:06:00] or even two times a day, lasting 45 minutes up to five hours, keeping me utterly exhausted. And the next day my muscles hurt and it's hard to move.

That's when we decided to start medicating me heavily, and the seizure-like episodes turned into what appeared to be PBA, also known as Pseudobulbar Affect. These are episodes of uncontrollable crying or laughing. In my case, it's only ever crying. That is not unlike my seizures that last for one to five hours, and there is never [00:07:00] any break or rest.

There is never any choice in what I do. They are completely involuntary and the movements are extreme. The PBA episodes involve the kind of crying and screaming that you did when you were 1-year-old. That kind of crying that was your only way to communicate. You never took a break because you just screamed your head off until your needs were met.

But with PBA, my body doesn't have a need that isn't being met. I have no emotion that needs to be fulfilled during that time. I just scream [00:08:00] and,

again, these episodes would happen up to two times a day, and there was nothing we could do about them besides wait them out and then often cry again out of genuine emotion because they were physically and mentally painful and upsetting.

Jill Brook: Oh yeah. Oh, and this is all because it's a side effect of the medication that stops the seizures.

So this is your choice, that or seizures?

Kai: No, this appears to be some sort of effect from the antibiotics that I took.

Jill Brook: Oh. So how long has this been going on?

Kai: I took the antibiotics in [00:09:00] late August.

So it's, it's been a long time. It's been a lot of days where I fear every evening because evenings are part of the trigger

that I,

I don't know what to do besides be afraid.

Jill Brook: Oh, well my next question was gonna be a really stupid one that I realized because I think you are largely confined to a very dark bedroom, and I had wondered, I, I know that you sleep much of the day, but when you're awake, I just wondered like

does time pass slowly? Does it feel like, are you bored? Do you spend a lot of time thinking or is that tiring? Or like, what, [00:10:00] what can you do when you're in a bed in a dark room? And so many things are like, I, I think you cannot watch tv, right, 'cause that's overstimulating?

Kai: Yes, I have not been able to watch TV in about 10 years.

Jill Brook: And I know you cannot sit up.

So that takes away some activities.

Kai: Yeah, I, I use a commode to go to the bathroom, and it used to be two steps away. And after one of the recent episodes, we had to put it six inches away from my bed because I was at such a fall risk. So I, my bed is my limits.

Jill Brook: So how do you pass the [00:11:00] time?

Kai: Well. As far as getting bored, because I have hypersomnia, if I get bored and tired, I fall asleep very quickly, which is very different from a lot of people with ME that's this profound. That most people this profound have the insomnia type and they end up, you're right, just staring at the ceiling with nothing that they can do.

There's a list out there of mental exercises you can do, and it's, it's painful to read because it includes things [00:12:00] like count from one to 10, remember a day that you enjoyed yourself.

Remember a person that you miss.

Remember, or, or think about how you would feel if some hypothetical situation happened.

And there's different levels for different levels of cognition, but a lot of 'em are like, go through the alphabet and for each letter, think about something that has to do with you.

Jill Brook: Wow.

Kai: So. I'm actually incredibly lucky to have hypersomnia and to have the ability to fall asleep [00:13:00] when I am exhausted

because these people need to stay still, do nothing. It's the only way they can rest.

Jill Brook: Can I ask how tiring to you and to other ME/CFS patients, is it to do the thinking? Is is thinking tiring to, or is that a freebie?

Kai: Oh, it is definitely not a freebie. It depends on the person. For me, I feel like it's not a big,

huge task, but there's, uh, a study that was done in Germany, I think it was Germany, where they [00:14:00] categorized the different functions that people with ME might struggle with, and it's A through H, and I fall a zero or a 0.1 on every single category except for communication, reactions to light and sound, and concentration. So I can talk to other people and I can listen to other people and I can understand what other people have to say most of the time.

Jill Brook: Maybe I'll just read a few of those questions so people kind of get a feel for it. It's everything [00:15:00] from using the toilet to getting dressed, walking various distances, standing up for various amounts of time, doing light house work or laundry socializing, having a conversation, or even just speaking a few words.

Some of the items are about just stepping outside your home versus going on an errand, and then reactions to light and sound for various amounts of time. And what's interesting about this is the answers. So the answers can range from zero to six, where zero is, I cannot do this at all, but then the other ones have to do with how big of a price are you gonna pay for it if you do do it.

For example, if you score a one, it would be, my capacity will be severely reduced for at least three days. Number two, I can do a little else on the same day and for [00:16:00] one to two days afterwards, and so on up until the last option is unproblematic. So for some people, and I am guessing Kai, that because you scored you said a zero to a 0.1 on some of those,

that means some of these questions, for example, sitting up in bed for a half hour...

Kai: I cannot do that.

Jill Brook: Okay. What about showering, seated without assistance?

Kai: Cannot do that, shower, or bathe or be bathed at all and have not for nine months.

Jill Brook: Can I ask you number 37, riding as a passenger in a car for approximately 15 minutes?

Kai: Nope. I can't even make it out to the [00:17:00] car.

Jill Brook: Okay. What about staying outdoors in daylight without sunglasses for approximately one hour?

Kai: That's one of those questions that's tricky because I can't stay outside for one hour in any situation. But if, if the important part is one hour of light. No, I, I,

I will be able to do it

if I premedicate,

and then continue to take medication for two to three days.

Jill Brook: And would you pay a price for it, for example, your capacity would be reduced for some days after?

Kai: Absolutely. This, [00:18:00] the light will cause me a headache, which can become quite severe and require some very heavy drugs to get me to the point where I can

not spend all my time

perfectly still in my room doing absolutely nothing, thinking nothing.

And,

and, and just stuck in the dark because that's the only way to deal with that kind of headache.

Jill Brook: Yeah. So can I ask, so like what, what are the things you look forward to? Do you have a time of the week or day that is your high point?

Kai: I, I don't have a high point. [00:19:00] If I could say that I have a high point, it would be the one friend that still calls me. The days that they call me are some of my best days.

I look forward to seeing my plants, but that has been seriously hindered by the inability to see them in person, that I rely on pictures from other people and I can't really look closely at those plants. I don't know how they're doing. I just see a [00:20:00] picture.

Jill Brook: Do you need separation because they need bright light and you need to be in the dark?

Kai: No. It's because I cannot leave my bed.

So every now and then my mom says, I'm worried about this plant, it's not looking so good, or this plant is looking really beautiful and I wanted you to get to see it in person because it is just incredible. So she'll bring them in and we will turn on a light and I will put on my glasses and get to see the plant, see whether it's got a problem or see its beauty if it's in bloom, and stunning and overwhelmingly beautiful.

[00:21:00] Those are things that I can look forward to.

Jill Brook: Yeah, that's great. I almost hesitate to ask, but what, what's the toughest part about having profound ME/CFS?

Kai: You asked me

what is tough, what do I dread about ME and my life the way it is, which

ME is only a part of it. It's a very severe part of it, but

I'm afraid there's little left in my life that I dread that hasn't already happened. I dread suffocation. I dread water for the same reason. I dread pain. I dread [00:22:00] certain types of mental pain, such as akathisia. I dread being alone, and I dread never getting to leave this room until I die.

Jill Brook: How do you cope with how tough it is? Do you have any things you do? Are there strategies or methods that help?

Kai: Yes, absolutely. Coping can include a lot of things for a lot of people, but there's, in my opinion, a universal and critical solution for anyone with a chronic illness, and it is knowing what ableism is, recognizing your own ableism, and then [00:23:00] starting to dismantle it. As a human these days, you are now and always will be part of a massive system

that is based off of ableism. The other name for this system is capitalism. A system where if you cannot work for enough money, you do not deserve to live. But I disagree. I think that there are other ways that people bring a worth into their communities that have nothing to do with money at all. You are now and probably always will be living in a society that discriminates against people using ableism as its basis.

And when I say you need to dismantle your own ableism, [00:24:00] I don't mean that you need to do it and congratulations, it's done. This is a lifetime worth of work. This is something you will be doing for the rest of your life because there will always be new things to recognize. There will always be new things that you notice and you need to get rid of within your own mind because they're hurting you in ways that you've only just recognized.

You'll learn empathy and compassion and how to put it into place as much as you can. You can teach new people how to handle their diseases or find resources, [00:25:00] or other people who can teach them how to handle their new disease without getting overwhelmed. You'll show people how to be empathetic.

We're only 60 years out from it being illegal for people like us to be out in public. So you'll show people that disabled people are common, or at least 25% of the population, but because of the ugly laws that existed up until the sixties, people don't know that

disability isn't incredibly rare. They think that less than 1% [00:26:00] of people are disabled because they never saw us. We were invisible to them. Just existing helps.

If you get really good at it, you'll learn to value yourself just because you exist. Just because you are alive and you are here. Most of us brought up in capitalism, struggle really hard with that concept, but there are steps that we can take to put us in a place that's in between. I teach myself that I have value that isn't connected to money. Right now

the biggest way that I try to bring value into my community is to talk to my friends, understand [00:27:00] their mental health, because most of my friends have some issue with mental health, and many of them have the classic A DHD issues. When I call them, they immediately start apologizing for not having called me sooner.

I tell them, I don't care that you haven't called me in three months. It doesn't bother me at all. I didn't call you in three months either because I wasn't ready to talk either. Do you blame me for that, for my disability that prevented me from calling you? And of course they don't. Instead, they recognize that my disability prevented me from calling them.

There's [00:28:00] always a moment of silence where they consider the idea that if they're blaming themselves and their own disability for a problem like this, it's not unlike blaming me for the same problem. We both have disabilities. And they're both preventing us from making this phone call. Slowly but surely

my friends learn not to blame themselves for it, because we're the same. We both explain why we missed the call, but it's never an excuse anymore. There's no, I am so sorry. A lot of those little things that neurodivergent people were taught to say or do are things that can be [00:29:00] unlearned. And if I keep repeating the things that I do know to show that we are not different at all and we all care for each other,

it brings us together. I work hard at it because that's where I feel like I have the best value, because I am one of the only one of my friends that on a typical day, doesn't have a big cloud over their head, telling them that they're doing things wrong. Most days I have good mental health and I wanna share that with my community.

Unlearning ableism is the number one biggest thing that taught me that I had value, and the [00:30:00] best thing that helped me cope was teaching other people that they had value too, and that none of this had anything to do with money.

Jill Brook: That's great. That's wonderful. Well, you've been so kind with your time and your energy today.

Um, what do you wish more people understood about ME/CFS, and just if you feel like it, what price will you pay for having talked to us on the podcast today?

Kai: Biggest things that I want people to understand about ME is I want people to know how to recognize ME. I want people to know how to recognize it in their friends and their families and themselves. It is all over the place. It is more prevalent [00:31:00] than many, many other diseases, yet it gets missed time and time again because people don't see the mild form.

They don't understand that having hard days and fatigue and some PEM, even if it's minor, means that you likely do have ME, that you likely do need to treat yourself very carefully and gently and learn how to pace your activity. Learning how to ask for help, because once you become moderate or severe, that's usually when people get diagnosed.

That is too late in my opinion. By that point, ME is already controlling your life.

I wish I could go through [00:32:00] all of the ways that you recognize ME in people, but I'm just going to stick with if someone you know experiences PEM or post exertional malaise, post exertional, meaning after exertion and malaise, which was an old word, meaning tiredness, exhaustion, pain, or just not feeling right anymore.

If someone feels those things one to three days after doing something bigger than their usual activities. [00:33:00] Usually this is something like, usually I work at my desk, but it's fall and I raked the entire lawn today, and then you are okay for the day and the next day you wake up and you can't get out of bed.

And then the next day you still can't get out of bed and you have to ask for help with everything but going to the bathroom.

That is usually what PEM looks like for people when they are mild.

So there are various criteria that could be used to diagnose ME, and it's very [00:34:00] difficult to find a doctor who can diagnose you with ME, but if you are experiencing those symptoms already, start treating yourself like you have ME, because if you ignore it for too long, you can ignore it until it's too late.

The second most important thing that I think people need to understand is just how dangerous and scary this disease can be. It's called chronic fatigue syndrome in a lot of places, but

a lot of people feel that this is not only [00:35:00] incorrect and insulting, but it's dangerous because it suggests to people that this is a mild disease. That it's, you know, a disease where you're tired all the time and everyone feels tired all the time these days. If you work, you probably feel tired when you get home every day no matter what.

But if you work then you end up experiencing PEM after your day at work, that's something serious.

Even the most mild form is a horrific disease, and the most severe forms are the [00:36:00] worst disease I believe that anyone in the world can ever get. I want people to be afraid of this disease. I want people to be afraid enough to start funding the right kind of research on it.

And on an individual level, I want people to learn to recognize it, to support the people in your life who have it because

what makes people become as sick as I am is lack of support from people around them, or lack of money to buy support from people.

If you have kids, you are going to take care of your kids. It's not something you feel you have a [00:37:00] choice in, but one day you are gonna reach the point where you physically cannot take care of your kids anymore, and that is the scariest idea

that I can think of.

So what price will I pay for talking today?

I started out today by medicating myself to prevent myself from becoming overstimulated, and having either a PBA or a non-epileptic seizure episode during the talk. Overstimulation is incredibly common in ME and it looks very much like overstimulation in people with autism except that [00:38:00] people become withdrawn and they

need to rest to recover.

Medication is very difficult and I need to be very careful to make sure that I'm dosing myself well enough to do this without falling asleep or becoming dopey. I felt quite dopey at the beginning of this. Luckily it faded throughout the talk and I'm now feeling okay.

As soon as I finish, I will probably take more medication and I will probably break down before the medication can hit. The problem with our pharmacy [00:39:00] system right now is that they can only give out pills, so I have to have a medication that hits within about five minutes to save me from a breakdown, but

pills don't do that, and they don't give out IV or nasal spray medications. So I have to wait, and it's never soon enough. Depending on how bad I'm feeling, either my parents will remove my phone, and turn on an audio book and help me turn onto my back, I'm laying on my side at the [00:40:00] moment, and hold my hand as I go through the

PBA or paralysis or seizure-like episode. When I've decided, if I can decide, that I can't handle my symptoms alone, I will use my call button, just an ordinary doorbell where I have the button and my parents have the speaker end, to call for them to come in and sit with me as I cry and I scream and I thrash or twitch or have

any number of different types of movement issues. As the medication finally kicks in, I'll [00:41:00] probably start feeling a little better and get upset about why the world is the way it is, and why I am the one who has to go through this.

I will take so much medication that I probably will sleep all the way through till tomorrow, and for the next two to four days, I will be very vulnerable to additional attacks. But there will be nothing anyone can do about it besides pre-medicating over and over and over again. So I stay unconscious, which is not what any of us want for me.

So [00:42:00] we'll find some kind of in between.

Jill Brook: Oh, well, Kai, thank you so much for taking this time and energy to share your experiences with us and to speak for all of the people who are in your position, but who don't happen to have the communication skills still intact as you do. So we appreciate it so much, and I know that everybody listening is just

wishing you all the best, especially in the next few days as you try to recover from, from giving us some of your, your, your time and your energy today. So, thanks a million Kai. It's been really special talking to you.

Kai: You're welcome. And I really hope that people out there take my words to heart and they

[00:43:00] learn what ME is, and they learn what it looks like, and they learn how scary it can be. And I hope, especially that within our own communities it becomes more recognized because I see,

I see Dysautonomia and MCAS and

EDS all being very well known across groups that deal with any of those issues. But anytime I mention ME, nobody seems to know what it is. And that scares me. It scares me because a [00:44:00] lot of the treatments for both EDS and for POTS are the exact things that bring people with ME down to my level.

I don't wanna see another person post saying that they

went ahead and they did a cardiac rehab and they had to drop out because they couldn't keep up with it. And they were told that if they didn't try hard enough to do it, then they just didn't wanna get better. It took them two years to find out that they had severe ME instead.

Jill Brook: Yeah, yeah, for sure. It is important for people to, to recognize it early and so we really, really appreciate your [00:45:00] taking the time to help raise awareness today and I hope that when you're up to it, you'll call me back and talk to us again.

Kai: Sounds wonderful. Thank you for this opportunity and I'll let you know how I do tomorrow.

Jill Brook: Okay. Please do. Okay, listeners, that's all for today. We'll be back again next week, but until then, thank you for listening,

remember you're not alone, and please join us again soon.