Tag: Disability

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Chronic Disease

Day 591 and Normal Sunday

Having a modest disability like chronic pain (I have a form of arthritis in my spine) means I can’t always be physically active for an entire day. I need to lay down flat sometimes to relieve pressure on my spine and I can be fatigued from the persistent pain. It’s something I have to work around even if it’s not completely debilitating.

I’ve worked hard to control the disease. But it has meant a lot of days where normal activity had a poor return on the energy invested. If had a day where I was on my feet for hours at a time I’d probably pay for it the next day with extra time laying down. So I try to limit unnecessary activities.

I’m giving a lot of context that might not be necessary for regular readers of this daily chronicle that know me. But it’s not always easy for me to do what normal people take for granted. Imagine a day where you wake up, shower, cook and clean up after yourself, you go to work, you run some errands, you exercise, you come home to cook and clean some more, you care for your family and maybe you enjoy a hobby. A regular day.

I named ten activities you do without thinking. If I want to avoid hurting myself or using too much energy in one day, I have to pick two or three of those things. You might not be surprised to learn I pick showering, work and my health routines.

If I’m having a good day, I can add on additional activity or two. But it’s probably something I can do laying flat on my back. That’s how Twitter became a central nexus for socializing if you are curious.

So having given paragraphs of context I hope it allows you to understand my excitement about having an absolutely normal Sunday. This morning got up. I made food for myself. I went for a forty minute walk. I did my entire biohacking routine. I went to a nursery to see about some options for the orchard. Then I went to the grocery store with my husband and we did the shopping for the week. Then we did some chores on the new homestead. A truly astonishing about of activities for someone like me.

And even after all activity that I felt well enough for a long shower (often a painful activity as hot water swells my joints). It’s 5pm and I’ve been up and about since 8am and only laid down just now to write this post. And someone I feel totally fine.

Shortly I’ll be cooking mushroom risotto for Sunday dinner. My husband is the cook of the family but for some reason Arborio rice is his nemesis. He’s never made a decent risotto in all the time I’ve known him. Typically after a day with this much activity I’d never even consider cooking. But I’m having a normal Sunday and doesn’t it sound nice to make something a little more involved to eat?

Categories
Emotional Work

Day 589 and Mental Health

Trigger warning: discussing depression and oblique references to suicidal depression. If you are in crisis please call 988.

I had a scare this morning. Someone I love is going through some stuff. I didn’t know if they were safe for a short period and I found myself frightened by the prospect of losing them.

When I learned they were safe I was relieved but also angry because how dare they scare all of us like that? I scrambled to cope with my own feelings and a desire to engage in codependent behaviors. I called my therapist and pulled myself together.

While I don’t suffer from depression it’s not an entirely foreign concept to me. It has felt closer over the pandemic as I’ve seen others struggle. I have family members and friends who live with varying degrees of chronic depression and I have witnessed first hand how much strength it takes live with it. I have chronic pain and I don’t think it is even in the same ballpark of debilitating as depression.

I’m not any kind of expert and my advice is mostly me talking into the wind so please only take what serves you. But what I’ve learned is that people genuinely do care about mental health if you want to seek a connection. We want to help. We want to help those that want to help themselves. Your people do love you and you may have more of them than you realize.

Sometimes it feels impossible to ask for help. Maybe you cannot ask friends or family because of any number of reasons. But that doesn’t mean you are alone or no one is here to help. There are hotlines. There are 12 step meetings. There are apps and services. As one internet friendly to another you are not alone. If you need mental health care please take whatever step feels feasible even if it’s just a text message into the either. You can do it.

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Chronic Disease Community

Day 571 and Isolation

The move to Montana is mere days away. Alex has started to feel a sense of loss. He’s been able to build a nice community here in Boulder in just two years thanks to his deeply weird (joking) habit of having hobbies. I on the other hand, have never felt more isolated from my hometown. I cannot wait to leave.

Some of this feeling of alienation is simply transient. It is my natural dislike of summer coming to a head because of the physical toll extreme heat takes on my spinal inflammation. I can’t be outside much during these new extended heatwaves, which defeats the purpose of living in Colorado almost entirely. Who wants to live somewhere you can’t go outside for 3-4 months of the year. Let it snow!

But some of it is that I can’t have physical hobbies that are too energetically expensive like like Alex enjoys. I spend my summer weekends alone in bed reading and shitposting, while Alex has a fairly vibrant in person social life year round. My lower key physical hobbies like gardening also aren’t particularly social even though they could be if folks wanted to join me.

Part of the issue is that we have a rented townhouse n Boulder that is too small to allow for any socializing. You can’t really come visit us. There is no open space for welcoming friends, neighbors or family members. While people have come to visit us in Colorado, virtually none of them have set foot inside the house. Some of that was Covid but it was mostly not having any space for anyone to sit and relax for extended periods. And because we knew it was transient we never bothered to fix it.

And when you can’t guarantee your physical health, it mostly looked like people coming to visit Alex and me staying home. I couldn’t afford to use my energy budget outside the home a lot during Covid. I assume folks think I hate them, when in reality I just can’t guarantee I’ll be well enough to be out and about for three hours.

It’s much easier for me to commit to socializing if I am home in a safe place where I can lay down or access my medications. I’d like to play host as it’s just easier to accommodate my own limitations. It feels selfish but I think most people wouldn’t mind working around a minor disability like spinal pain.

I hope that people will take this as an open invitation to come visit us in Montana. We will be investing heavily in our guest rooms and eventually a full guest house in the barn. We want people to come up to take advantage of our access to a more remote and laid back form of living. You can go shoot with Alex or you can kick back on the porch and stare at the mountains with me. It’s up to you. But we’d both love to see you.

Categories
Chronic Disease Emotional Work

Day 560 and Unstuck

Yesterday was a particularly challenging day for me physically. I described how I was becoming stuck simply because the pain to change positions, even if I was uncomfortable sitting up, was such an obstacle.

I’m just stuck in the pain until an even worse pain develops. That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change.

Waxing philosophic about pain is clearly an ongoing theme of this daily writing exercise. I’ve got 108 mentions of the topic so yeah that’s chill. Considering it’s a daily accompaniment I’m relieved it’s not a larger number. Most days I am clearly able to become unstuck from the pain enough that other topics occupy my mind.

I am however not feeling great about how unstuck I feel in life this week. Perhaps it’s the combination of a symptom flare with the final countdown to the big move to Montana. It’s all waiting and anticipation and frantic preparations combined with physical struggle and fatigue. It does not make make for an environment where I feel I am best moving my life forward.

I am someone who very much relies on and feels embolden by willpower. The feeling that I can simply apply my intention to something and through that focus bring it into fruition is a super power. The American dream has been littered with manifesting energy. The Secret literally is our religion.

So I hope that, as I sit in this last waiting period before I confront massive change, I am able to let myself be. To not be obsessed with being stuck or unstuck. But just be in the moment I am in without judgement.

Categories
Chronic Disease

Day 559 and Stuck

I got stuck on the couch today. I’m not entirely sure why but I’m in the middle of a massive symptom flare. The pain is so acute and unrelenting that if I so much as sit up from bed I’ll get stuck in that position. I made the mistake of trying to eat lunch on the couch around noon and didn’t work up the capacity to get back into bed for over an hour.

This is becoming a theme on bad days. I’ll find myself upright for forty minutes completely unintentionally because moving, even to a more comfortable position laying down, is so painful I will put it off until I simply cannot remain upright anymore. It’s just that bad. Even the higher grade pain management isn’t doing shit. I’m just stuck in the pain until an even worse pain develops.

That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change. And I’d love to wax philosophic about that but I mostly mean it literally. If you’ve ever wondered how I got popular on Twitter, it’s simply because it’s the only thing I can do when I’m physically stuck in place by pain. I thank the internet Gods that this has been monetizable through investing or I don’t know what I would do.

You could almost surely correlate the number of tweets I send with the pain scale of my day. If I’ve tweeted more than 50 times on any given day it’s probably because I am over a 7 on the pain scale. It’s 2pm and I’ve tweeted 32 times today not including my DMs. I keep hopping the pain will abate enough that I can shower but it doesn’t show any signs of letting up today.

Frankly I’m just relieved it’s only my spinal pain and not anything else more exotic. Earlier this week I was dealing with being itchy and then I had a migraine that took 48 hours and several Imitrax to break. Regular old spinal pain is at least a recognizable and normal return to form. But until this nerve storm abates I’m stuck. At least until something worse comes along.

Categories
Chronic Disease

Day 556 and Histamines

I am so itchy my entire body is covered in yellow and purple bruises from my attempts to generate some form of relief. I set out title tag this post with “itchy” but apparently I did that three days ago.

That makes me feel super fucked as I honestly don’t even remember writing it. It’s been a blur of Benadryl and travel and shitty sleep and absolutely no recovery. And I am desperately thirsty because I keep taking drugs that dry you out. It’s a misery.

I am running a poll on Twitter asking if nausea, pain or itching is the worst discomfort. Pain changes you the most. Nausea is the most consuming. Itchiness is the most irritating.

I probably feel that way because I am being driven absolutely nuts by the itching. I went for a short walk this morning before the heat dome took the temperature to 100 degrees in Colorado. It was still hot enough that I swear. And everywhere I swear I found myself with a light heat rash afterwards. My body is clearly on some kind of self hating response loop as that’s not normal even for me.

Categories
Medical

Day 553 and Itchy

Pollution in the air, chlorine in the tap water, and overflowing filters on struggling air conditioners have left me an itchy mess. Not all parts of European have clean air or water as it turns out. I’m on the Ionian Sea and let’s just say the history of close economies and socialist strong men have left a legacy of infrastructure underinvestment.

My eyes look like I’m high as a kite. I’ve got angry raised welts across my arms. I have a lymph node that got backed up and is now the size of a marble under one armpit. A few of the hives have struggled to heal over and now require antibiotics. I love needing a course of Doxycycline on the road because a sore couldn’t fight off some exotic invader. No wonder they put enough chlorine in the water to scent an entire Olympic size pool. It’s clearly not enough.

Travel has always been a challenge when you are disabled. The indignity of finding yourself with seeping weeping yellow teardrops isn’t very relaxing. My travel pharmacy is working overtime as I carefully mix doses of Benadryl, Hydroxyzine, and Cortisone creams. And my travel cosmetics simply cannot fix the deep sunken blue eye bags that have developed from rubbing in antihistamines and spritzing in eye drops.

I really hope that no one at customs decides to get too curious about why I look so utterly fucked. I’m not entirely sure “I’m sensitive to pollution” is that believable to someone for whom this level of irritants is normal.

In less than a month I’ll be moving into the homestead in Montana. I’m dreaming of the clean air and sparkling rivers. I hope I can stay out for sometime. If I never have to leave “the last best place” on earth I’ll be happy.

Categories
Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

Categories
Travel

Day 549 and Rekt Travel

One more institutional bit of trust has frayed and snapped for me. I don’t trust travel any longer. Maybe I trust the big airlines and well traveled routes but off the beaten path travel isn’t for me any longer.

Someone didn’t fully understand my limits and I found myself struggling in a situation well beyond my physical means. The trust was so broken I don’t know how to even begin putting back the pieces from it. I’m exhausted yes, but the worst part is the fear I feel from being put in a bad situation and seeing just how incapable I was of fixing it myself. I’m not independent anymore. And I’m scared and angry about it.

I envy people who can have a situation change and have it’s impacts be immaterial on their day. Oh it’s inconvenient if the travel estimates were three times longer than planned. Oh it’s annoying that there is no air conditioning. Oh it’s frustrating that all these minor details are annoyances for you and intense health risks for me.

I fear I’ll come out of this experience paranoid and much much sadder. I feel stupid I couldn’t protect myself. I feel gullible that I let someone else handle the details. People tease me that I prepare for travel so aggressively. That it’s eccentric and odd and a sign of being a crazy woman.

But when the consequences are so expensive; a thousand dollars gone in a hotel scam, a fortune in gas, an extra thousand to weekend hour doctors to stabilize. I think it’s sensible to be extremely prepared. Nothing black pills you faster than being sick. I tried to act like I could be a normal person and just got rekt.

Categories
Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.