I hate being ill

Another chronicle in the life of disability, shame, and forgiveness

Content warning: this post talks about suicidal thoughts.

Maybe the worst part of this illness¹ is the hope and normalcy I feel during the good times. When I'm strict with my energy boundaries and stay within my limits, I feel good. Sometimes even great. I can think, I can write, I can craft. I can follow a baseball or hockey game, read a book, and/or watch a movie. I can chat with friends. Life is small, but I feel gratitude for what I have and determination to advocate for those who have less than I do.

But it's also very easy to forget where my energy limits are and push past them accidentally. On the new Matlock show, there’s a line where “Madeleine Matlock” explains to her grandson that having an addiction is the one time people must be absolutely perfect, and being absolutely perfect is so hard. I'll add that having the ability to experience PEM also requires perfection because slipping up damages the body in spectacular ways that are hard to describe and seemingly hard to believe unless you've experienced it yourself.

Last Tuesday I took Seffi, my newly adopted cat, to the vet for the first time. The vet has moved since my last cat, and at the new location there are stairs. I didn't think about looking for an elevator or asking my mom to carry her. I just took her up the stairs. Soon after, I had to stand to hold Seffi as the vet listened to her heart and again when she was vaccinated. My type of POTS doesn't make me faint. Instead, my blood pressure skyrockets, a headache starts or intensifies, and I feel nauseated. For me, that's pretty easy to ignore in the moment and it did not occur to me to tell the vet that I couldn't stand.

Even after a full year of focusing on how to put myself first for the sake of my health and happiness, I didn't even have one thought to ask for help in a situation where I was helping someone else, in this case my cat. It wasn't a case of me being stubborn and not wanting help. I'd be mad at myself in that situation (I've been there many times before) for letting my pride and ableism get in the way. But this scenario? I feel so deflated and frustrated and ashamed that I didn't even give myself and my needs the briefest consideration. I let myself down and I'm really sad about that.

But on top of sad, I feel broken because that's what PEM does. From what I understand, we still need more research to understand exactly what happens on a cellular, chemical, and energetic level in bodies that experience PEM. But I think it’s safe to say it can be described as going into extreme energetic debt. And now, almost a full week later, I still don't have the required energy to think properly or feel good. I ache in my joints and muscles. My brain feels detached and hard to access, living somewhere underwater in weeds. I read about Juan Soto signing with the Mets for $765 million dollars and felt approximately nothing. Nothing! I'm a little bit more energized the next day and can manage an exclamation point, but I’m missing the disappointment that he isn’t a Blue Jay. The outrage at any one person making that much money. The giddiness that at least the Yankees didn’t sign him. The hope the Jays will now extend Vladdy. I have those thoughts, but they aren’t connected to any emotion. It's almost like being in the middle of a major depression episode, but it’s not exactly the same.

One visual metaphor of my brain: pretty great if only you could see it.

How is it different? I wish I was better at knowing how to describe my experience. When I've been depressed, I would wake up and immediately close my eyes again to fall back to sleep, begging the universe to keep them closed for all of eternity. With PEM, I wake up and I feel like I'm in a haze, but I want to get out of bed and meet the day. Then reality comes into sharper focus as I feel my throbbing head and thigh muscles. When I've been depressed, I ignored texts and emails, wanting nothing to do with other people and desperately hoping they would forget me forever. With PEM, my messages are shorter and I don't send as many as it hurts to think and hurts to look at any screen, but I send them because I'm desperate for connection. When I've been depressed, a chore like vacuuming would not happen without days of pressuring myself to do it with mean, negative self talk. Today, I thought to myself that perhaps vacuuming would help me recover faster, as the dust does affect my mast cells. So I dragged the vacuum up the stairs. When I've been depressed, I've quite sincerely wanted to die and made many plans to do so. With PEM, I feel death calling me and I do think about suicide, but in a more detached, philosophical way. It's not what I want and it's not something I think I'll do, but I'd be lying if I said the thought experiment doesn't have an element of comfort. After all, I don't want all this pain anymore.

(If you are reading this and worried about the possibility of Kate + suicide, I can tell you I have discussed this with my doctor and I don't think it's a risk worth worrying about. My plan would be to ask my doctor for MAID, which I would likely qualify for. But I've told him it's not what I want and if I go to him to ask for it, we'll look for other solutions. He will help me live, not die.)²

In the Matlock episode, she tells her grandson this because her daughter - his mother - died from an overdose. She wanted him to have compassion for his mom, not anger. In the same vein, I suppose I do need to forgive myself with compassion.

The situation

I completely disregarded my own needs at the vet when I didn't ask for help to carry Seffi up the stairs or when I needed to sit down, but instead stood to help.

The needs I didn't meet

Keeping my heart rate under 130 and pushing past my energy limits.

The consequences of my actions

My health has deteriorated, I'm in a PEM flare, and I'm experiencing so much pain.

Why I did what I did

I have a lifetime of conditioning to put others before me and not to ask for help. I literally could walk up the stairs with her in the moment, and it's hard to know what will put me over the edge. I was anxious about how Seffi would react to going to the vet, and that took over my thoughts. I didn't know there would be stairs and was caught off guard. I had been feeling pretty good and forgot that I need to plan on how to keep myself safe. I don't have a lifetime of practicing how to live within very strict energy boundaries and I did what felt normal for my life pre-infection.

How I can regain trust with myself

I will learn from this mistake. Every time I leave the house I need to schedule time to plan for how I will take care of myself and I sure know this now. Writing this out is a good step to help me remember how bad I feel and how much I don't want to feel this way again. I'm living with an illness that isn't well understood and extremely difficult to navigate. I don't have role models in my real life to learn from, so I probably am going to stumble; as much as I need to be perfect, I'm probably not going to achieve that success rate. That is really hard to accept, but I want to be gentle with myself because I am human and humans make mistakes. I have a new data point that I can use to better understand where my limits are and how to live within them. When I know I have something to do that is outside of my regular routine, I can ask questions online with chronic illness hashtags to try to get advice from people who understand the stakes and might have ideas on how to stay safe.

What I will do if this situation comes up again

This will come up again next year at the latest. I can ask in advance if there is an elevator, and if there isn’t, ask if someone can meet me on the main floor to take Seffi up the stairs. I can ask if there is a way for me to hold Seffi while sitting, and if not, ask if a staff member (or my mom) can assist. I can bring my collapsible stool to elevate my feet while sitting, and wear sunglasses inside to reduce added stress from the fluorescent lights. I now know what I need, so that makes it easier to know what to ask for. Hopefully.

Do I have any unwarranted guilt or shame?

I do have shame about not being able to do what I want to do - shame that I am ill. I also have shame for still feeling that shame. How and why have I not shed that shame yet??? But both shames are the consequences of living in a shame based culture. Just because I don't want to feel shame doesn't mean I have the experience to shield myself from it. All I can do is accept that it's there, that I don't like it, and that it will take time and practice to live without it. It's better to give myself gentle compassion and accept the shame I have rather than invite in more shame while asking the first shame to leave.

I feel guilty that I didn't consider my disabled-person needs. I think this is warranted guilt and something I can work with. I'm glad I feel guilty and I'm glad I'm letting myself feel guilty about it. That's what spurred this post and the work I'm doing to try to prevent it from happening again. It's hard because again, I live in a culture that doesn't prioritize the needs of the disabled. I have to learn how to do this as an adult and that is hard. For many people, it's good to push up against physical limits as that increases capacity. The tiny muscular tears lead to bigger muscles. But when I do it, I fry my mitochondria. I must resist the lure of praise for exercise and action and find a way to praise myself for inaction. I can't rely on common sense because I'm dealing with an uncommon problem. I can give myself grace for learning how to live with this extraordinary challenge. It's so hard³. But I'm going to just keep on resting and living small and try to learn from my mistakes, because what else is there to do? The alternative is continued deterioration and pain.

1. MEcfs version of long COVID

2. I must say that it’s wild to be in a position where there isn’t a guarantee to have a doctor who will work towards keeping you alive and well (enough). It’s worth listening to disabled people when forming thoughts on MAID because many of us are being pushed towards a death we don’t want)

3. If you are an overworked person, you might think it sounds great to spend most of the day resting and lounging. But that really just indicates you need a better job that allows you to rest. Because being forced to live small when you want to live big is hard and it isn’t fun.