What shopping carts show us about capitalistic ableism

December 31, 2023

Well that was a surprise: my last post was over 5 months ago, and in that post I said I would continue writing, but then, well, chronic illness was its usual pain in the ass and then some. Still, better late than never, right?

I said in that post that I was dealing with a lot of fatigue because my medications were off and I was waiting to see a new doctor. Well, that new doctor ran a lot of tests; I thought she went overboard, but I’m so glad she ran them! Not only were my medications off, but she found a couple of other issues, also. I’m getting treatments for both. One is long term and I’m slowly but surly getting better. The other should be temporary, and if my immune system was functioning the way it should, I’d be better by now. But it’s not, and I’m not. So instead I’m spending a lot of time resting. I’m not socializing with friends or doing fun things. But hopefully soon, in the next few months, that will get better, too. The fatigue has improved, but not enough, and over-exertion is a big issue.

Even with the extra health issues and the accompanying extra symptoms, I need to keep doing the basics of life, and that includes getting groceries. It was on a recent grocery trip that I felt fed up with the shopping cart system. I’m sure it’s different in different parts of the world, but where I am, the system sucks for disabled folks.

Let’s say you use a cart while you shop, and then you use it to bring your purchases to your car. What do you do with the cart after you unload everything? Where I am, there are usually two options: bring the cart back to the store’s entrance, or put it in one of the cart return areas in the parking lot. There are usually a couple of these in each parking aisle. This seems simple, but there are definitely problems.

Typically the parking spaces closest to the store entrance are marked as accessible parking. Then there are a few regular parking spaces. Then a cart return. Then more parking spaces and, depending on the size of the lot, there may be a second return farther down the aisle.

The most obvious problem is that some people don’t feel like walking to those cart drop-off areas. If they’re parked near the accessible parking spaces, which are bigger than most, then if one is empty, people will often leave carts there. Even if the spaces are taken, people will often leave carts in the marked off area next to the spaces, which then blocks many wheelchair users and others from enter or exiting their vehicles.

The problem that is apparently less obvious but shouldn’t be, is that disabled folks also need to return our carts. Let’s say I park in an accessible spot because I need to reduce the amount I must walk. By the time I get to my car I’m in pain and/or fatigued. Now I need to return my cart. Walking back to the store is too far. And walking all the way over to a cart return is also too far – if it weren’t, I could have parked over there to begin with!

Both of these problems could be solved by simply moving the cart returns closer to the accessible parking spots. Then we’d have accessible parking spots followed by cart returns followed by regular parking spots and then another cart return and finally more regular parking spots.

This solves both problems because disabled people would have an easier time returning our carts and non-disabled people who park nearby could leave their carts in the cart returns instead of in the accessible parking spaces.

This is where capitalism comes in, I would guess. Stores want customers. Most customers do not park in accessible parking. Most customers want to park close to the store. The stores do not want to take up the closer regular parking spots with cart returns. That isn’t an efficient use of space for their paying customers. Yes, it’s only a tiny extra distance for an abled person to walk. Yes, someone who has to return a cart would need to do extra walking either way, and this just changes the direction. But it feels like more effort for folks, and no one wants that. Apparently it’s better to cause a few people to expend a whole lot of effort than to cause a lot of people to expend a tiny amount of effort.

I’m curious what you think. Are parking lots in your area set up in this way? Have you experienced a better system? Am I missing something? I’d love to know!

4 Comments | Fatigue, Frustration, Parking, Rants | Permalink
Posted by chronicrants

A dozen years later…

July 21, 2023

Today is the anniversary of this blog. It’s a simple sentence with a lot of meaning behind it.

Back when I started this blog in 2011, I had ideas about what it would be and what it would mean. A lot of that worked out, some didn’t, and a lot I honestly can’t even remember. What I do know is that 12 years ago today, while I worked at a job but struggled to do anything else, I committed to this blog. I promised myself I would write every day to start, and I did. I wrote daily, even if it was just a small blurb. It was good for me to have that commitment. While I struggled so much, this was something I could do for myself.

This blog has helped more than I can say. The community and support here have been invaluable. Yet, you may have noticed that I’ve been writing less. While I no longer write every day, or even every month, this blog is not forgotten. In fact, in the two months since my last post, I have jotted down several ideas, and have wanted to write quite a few times. So why don’t I?

First, during the years of writing this blog, I also wrote a book. I published it under my real name, yet I want this blog to stay anonymous. I often post something on social media or in a newsletter that relates to my health. Later, I think about writing on that topic for this blog but I realize I can’t, because it would be too easy to link the two.

Second, I’ve been writing this blog for 12 years! Chronic illness is never-ending (that’s the whole chronic part, right?) so there’s always more to say, but it doesn’t always feel fresh and new. This particular post is #802. After more than 800 posts, it’s hard to feel original.

And finally, I’m tired. Just so tired. My medications have been off for a long time, and I have been trying to find a new doctor to fix things. (Side note: I’m seeing someone new in another month, and hoping that maybe this will be the one.) Meanwhile, I have fatigue. I also have to care for my own health, do the stuff of life (groceries, cooking, laundry), take care of my pup (yay, I have a pup! I’ll talk about him separately), and try to do small amounts of work in addition to, you know, trying to have some fun and see family and friends and DO THINGS. Something’s gotta give. Too often, this blog is one of those things. It’s not that I don’t care, just that I feel overwhelmed and because I take this blog and you for granted, I let it slide. But I shouldn’t take you for granted. You have been amazing. You have shown me support and provided so much great advice. I should offer more in return.

I want to say that I’ll start writing regularly again, but I don’t think I can make that promise. What I can promise, though, is that I’ll continue to think about things I want to write and that I’ll make more of an effort to write at least some of them. Because today marks 12 years of writing about a journey that still has a very long way to go. And I definitely have more to say about it.

4 Comments | Fatigue, Limitations, Milestones, Raves | Permalink
Posted by chronicrants

Terrified that I won’t find a new doctor

March 17, 2023

I’ve written about this before, but then, that’s part of chronic illness, isn’t it? So many things recur because, after all, our health problems are chronic. Still, this is by far the biggest problem in my life at the moment, so it’s what I’m going to write about today.

The back story starts years ago, when I did my own research to learn why my thyroid treatment wasn’t working. It took a while to find a doctor who really knew how to treat me in a way that would actually improve my symptoms. When I finally found that doctor, I stuck with him.

Meanwhile, I was treating my adrenal insufficiency with supplements. I did my own research and worked with my naturopath. At first they helped, but then the company I used went out of business. I had to switch to a different brand and it was never as effective. After 7 years of supplements, my naturopath finally convinced me to do what my doctor had already been encouraging: hydrocortisone. I had resisted this course of action for a long time, but I finally gave in.

With the right thyroid treatment and the right adrenal treatment, I felt better than I had in years. It felt miraculous. For a short time, that is.

Fast forward to a year and a half ago, when my doctor urged me to go off the hydrocortisone for six weeks in order to run some tests. It was hell. In theory, after the tests I should have gone back on the same dose and felt fine again. For some reason, though, that didn’t work. We raised the dose. And then my doctor retired.

I found a new doctor, and I thought he might be ok, but at our last visit I changed my mind. First he said I’m hyperthyroid based on just the TSH, without considering the Free T4. Also, he doesn’t even run a Free T3! But even worse, when I described some adrenal hormone-related issues I have, he said they’re signs of being hyperthyroid. Which makes no sense. I’ve had these episodes for years, even when I was hypothyroid. Even though I only get these episodes once every week or two at most. Even though they stopped when I got on the right dose of hydrocortisone. They recently returned, which is why I’ve questioned whether I need to change my dose. But he insists they’re proof that I’m hyperthyroid. What?!?

Ok, so maybe I need a new doctor. But I could have lived with that. Then he announced changes to his medical practice that would end up costing me thousands of dollars a year. Literally. And I’m already not happy with him. So now I feel that I need someone else. But…. what if I can’t find anyone else?

I’ve been looking. So far, I’m not finding a lot of options, and the ones I do find don’t take my insurance. I don’t even know yet if they are taking on new patients. Or if they have the knowledge necessary for my kind of complicated case. Or if I’d like them.

My PCP won’t prescribe hydrocortisone at all, and her way of managing thyroid conditions would send me back to where I was at more than a dozen years ago. I’m terrified. It took so many years for me to get to a level of health where I felt that I could more or less function, and I worry that could be snatched away from me. Not only do I need these medications to live, I need them to enjoy life. Even with these meds I can’t do a lot of things I want to do: go dancing, hike, spend all day doing fun activities, keep up with my nieces and nephews, keep up with my own 70-something mother, attend a wedding without needing days afterwards to rest. Still, they allow me to do a lot more than I otherwise could. And I could lose them.

I’m terrified. There simply aren’t many doctors around, regardless of insurance coverage, who do the types of treatment I need. What happened? I feel like there were more options a dozen years ago, but the numbers have been shrinking and patients are left in the lurch.

I don’t know what to do. Every time I think about calling more pharmacies to ask for names of doctors, checking more doctors’ websites, calling more medical offices, I freeze up. Avoiding the issue won’t fix it, and only causes the entire situation to weigh on me and add to my stress levels – and added stress is especially bad for someone with adrenal issues that aren’t being properly treated!

Right now I’m going to take a few deep breaths and make some more calls. It only takes one, right? Just that one special doctor. Still, I’m scared. Because I know it’s possible I won’t find them. And then what?

6 Comments | Fatigue, Frustration, Healthcare, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

I’m ok but not really

July 15, 2022

Maybe it’s my imagination, but lately it seems that people are asking, “How are you?” more than usual. I’ve hated this question for decades. I feel stuck when people ask: do they really want to know? If so, how much should I share? This issue isn’t new to anyone with chronic illness. I’ve written about it before, as have a lot of other folks. But these days, I’m dealing with something else: normalizing my own not-okay-ness.

Let’s start with my real answer to “How are you?”, what I’d say if I were being honest with them and with myself, and then I’ll break things down.

I’m fine. Ok, I’m not really fine, but I’m fine enough, you know? I’m getting by. I’m surviving day-to-day and it’s good enough. I mean, sure, it’s not really good enough, but it’s as good enough as it can be right now, you know? It’s doable. I’m overwhelmed. I’m exhausted. I’m doing an elimination diet that is stressful and overwhelming. I’ve going to in-person occupational therapy twice a week which is a lot logistically, and that’s before you account for doing the exercises at home every day. It’s supposed to be twice a day but I. Just. Can’t. I’m still trying to do my physical therapy every day. I’m exhausted, did I mention that? I haven’t slept well these last few… days? weeks? And I’ve been having nightmares since the pandemic began, too. I’m anemic and my thyroid levels are off. Those two are probably related. I’ve waited months and I’m finally getting an iron infusion next week, since supplements don’t work (no, I don’t know why I can’t seem to absorb certain nutrients) and I’ve had bad experiences with the infusions in the past so I’m really nervous. The last two times I brought someone with me but with the pandemic, I can’t do that this time. I wish I could bring a dog to cuddle. Anyway, I’ll be glad to get that over-with, but it can take weeks, or even months, to feel the effects. Oh, and I got my period this week so I was extra emotional and I lost a lot of blood. I had to spend time washing blood out of clothes and going to the bathroom every hour or two to deal with it. I’m sure that’s not helping with the anemia, either. Did I mention the new pain I’m having? And the two new diagnoses I got this week? I might have forgotten that. And it’s summer and while for some reason I hoped it would be different this time, it’s not. The heat and humidity bring additional pain, and it sucks. And Covid cases are soaring and people still aren’t wearing masks which is so damn disrespectful. Plus several friends have told me big secrets recently and I really want to talk those things through with someone but I can’t because they’re not my secrets and eventually it’ll all come out but it could be a long time and meanwhile I keep worry about these people that I love so much. All I want to do is sit on my couch and read a good book, watch movies, and crochet. But I can’t. I have to do my occupational therapy and physical therapy and prepare meals and go to appointments and do housework and try to do at least a little bit of volunteer and paid work. But you know, I’m fine. Because I feel like I have to be. I’m getting by, one day at a time, and that’s enough, right?

That’s what I want to say. But I never do. Some people hear bits and pieces. I’ll tell a friend that my heavy period is probably making my anemia worse and is probably why I’m extra fatigued this week. Several folks know about the stress around the elimination diet. A few know about this and others know about that and some don’t know anything because I just don’t even want to deal with answering a bunch of follow-up questions. And through it all, when a good friend who also has chronic illness asked this week how I was doing, my answer was still to say that I was fine. Sure, this was partly because I just didn’t want to talk about all of the crap I’m dealing with. It was partly because I didn’t want to bother her with everything. But it was also partly because I truly believed for a moment that I was fine, or at least fine enough.

Even I can tell that I’m really not fine. Come on, look at that answer above. That is not a “fine” answer. But I’m continuing to live my life, and it’s giving me the illusion that I’m ok. I’m so tired that I’m not processing my feelings, I’m just pushing them aside. It’s the exact opposite of what I’ve been learning in therapy but at the same time, even my therapist agrees that sometimes I need to compartmentalize. Sometimes it’s helpful for self-preservation.

And maybe that’s what believing I’m “fine” is all about right now: self-preservation. Because if I think too much about the many ways that I am so obviously not at all “fine” then I may loose my shit. And frankly, I’m too tired to have the really good crying session that I probably need right now.

I think that sometimes we need to give ourselves the illusion that we’re doing okay as a way of surviving it all. I feel like it’s ok to do this, as long as it doesn’t last too long, and as long as I recognize what it is that I’m doing. At first I really believed I was ok. Now I see it for the facade it always was, but I’m still using it, holding up the shield of fine-ness while knowing the shield is fake. Eventually everything will break through (probably at my therapy session next week, the first in several weeks due to my therapist’s vacation) and then I can hopefully go back to seeing the truth. But until then, I’ll keep hiding behind my fake shield, because at least it’s helping me to get through each day.

Does anyone else do this? Do you ever truly believe you’re fine, even for a minute, when it’s obvious that you’re really not? Does it help? I’m curious to hear others’ perspectives and experiences.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants | Permalink
Posted by chronicrants

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