Adapting With Illness

I had to do a very scary thing this summer. I got a part-time job to help with the finances lost from not being able to hold summer camps or gig (aka perform for those of you unfamiliar with that word).

Why was this scary? Well, for one, I’ve been my own boss for a long time and I didn’t want to screw anything up. And, for two, I knew I was going to have to learn to adapt some of the limitations caused by my chronic illness and I didn’t want to screw anything up.

Working for oneself, adapting based on flares with my illness isn’t tricky. I set my schedule and decide what I can and cannot do on a particular day. But that’s not how it actually works in a job where you come in on the schedule…and I kind of wondered, would I be able to manage and keep up?

Sure, on the outside I appear to be somewhat normal and functioning; but there is a lot that goes on behind the scenes to help keep me appear functioning (and sometimes even then the plans don’t always work out).

So after I spent some time being trained (this was part-time weekend work for some wonderful, lovely people Tyler and I have known a long time who have a great business-yet another reason I didn’t want to screw it up), I came up with some adaptations. And I’ve found these adaptations to be just generally helpful as I continue to navigate the grace I need for living with a chronic illness.

The Apron

I wore an apron at work. It’s not mandatory or anything, but the business provides optional aprons to protect clothing. And sure, I do have a tendency to be messy. But the other thing about an apron, is that it has pockets for carrying things.

After the first day, I decided to bring my own apron from home. The pockets in the one I had at home were deeper, so I could fit more in them to have on me (what I carry with me I’ll go into later). Having easy access to any medications helped a bit with the feeling of anxiety about having to use medications during the day. With the meds close to me, I was more likely to use them if needed and therefore avoid a crash or flare becoming exacerbated.

But what I discovered about wearing an apron (any kind) is that they pull at the neck quite badly. Maybe not so for most people, but as someone who has muscle spasms and aches easily, I don’t do well with something being held up by my neck. My apron had larger, thicker straps than the business ones, so I thought that would be easier on my neck (since my pockets are slightly weighted down with my meds) but alas, I was still getting a horrible stiff neck.

Of course, wearing one’s own apron meant I could adapt the apron itself so it’s weight was distributed more evenly. After some pondering, I cut off the all the straps and attached a pair of black suspenders to the neck and sides to distribute the weight around my back and shoulders. Because of the criss-cross shape of the suspenders, this also allowed me to let the apron be slightly loose (tight clothing is a huge issue for me in managing my symptoms) and not fall off. Speaking of clothing…

My Clothes

Why yes, I’m done wearing all black and have switched to colorful prints. So, I am emotionally feeling much better about my condition and accepting instead of constantly mourning my losses.

Okay, there is no uniform for this job. Just something comfortable that you wouldn’t worry about getting wrecked from the products you are working with. So I thought for about a week and came up with a couple of rotating options for my shifts. I tend to overheat easily (and that leads to migraines) so I needed to consider my wardrobe carefully. I went with long, unfitted dresses in cotton or lightweight modal fabrics (think big and shapeless) for more airflow and easy movement walking around, bending, etc.

I wore slips under my dresses, yes-just like it was 1942. The slips help with cooling and keep my clothing from sticking to me when a hot flash does rear its ugly head.

I had lightweight short and long sleeve tees to wear over the top of my dresses. And I also wore my favorite, soft tennis shoes. Reebox Princess tennis shoes. It’s a “vintage” style I use to wear in elementary school and they are sooo comfortable. I own several pairs in multiple colors.

[If you’ve ever seen the tv show “Grace and Frankie” just imagine I’m near on my way to living my dream clothing life-and dressing like Lily Tomlin’s hippie character in the Netflix show.]

Medications

Well, I’m not going to give you a list of my medications. But, having them at hand did make me more likely to take them instead of “toughing out” any difficult symptoms.

I had my rescue inhaler. (I keep several everywhere, in my car, purse, by my bag and on my person if I can’t carry a purse. And with covid this seems even more important to have it as close as possible).

I had two little travel plastic pill containers that I labeled. They had migraine/pain medication and supplements and allergy medication.

These pill containers and inhaler were kept in my apron pockets (because let’s face it-women’s clothing severely lacks functional pockets). I also had some anti-nausea ginger chews that I kept in my bag because I use them less frequently. I’m nauseous so often I function just fine with a constant nauseous feeling. But if I can’t stop a migraine with my meds before it gets too serious and then get nauseous…I’ll need the extra help. I’ve also discovered drinking regular coca-cola to be a big help in aiding migraine recovery and with my nausea. Which, is not ideal because-wow-the caffeine and sugar, but at least it could help me through on bad days. By mid-summer, I was drinking Coke my entire shift to make it through the seven hours. 😬 Fortunately, while I feel nauseous quite regularly, I almost never vomit. Thank goodness for small miracles.

My Hands

As my hands are sometimes the most bothersome part of my troubles, I quickly tried to keep as many adaptations to them as I could. Because of hand washing with covid, I couldn’t wear my compression gloves all the time. Which meant I sometimes had to deal with shaky and achy hands. But when I could (say if I was mopping), I would bring in a newly washed pair and wear them once. And then keep a second clean set in a plastic baggie in the back should I need to wear gloves again. (To avoid reusing anything…with covid and just being sanitary in a customer focused business).

I also have moved my wedding rings to a chain so I don’t have to worry about removing the rings and losing them when wearing the gloves. This is somewhat a bummer for me, because I do like wearing rings, but I think the chain I picked and it’s length fit with my new found hippie/crazy lady aesthetic pretty well. 🤪

Medical Appointments

For the majority of the summer, I made sure to schedule an appointment every two weeks with one of the services that help me the most. Chiropractic care and Massage. (Once band camp started this became impossible because there was no actual break in my days at all). This was an increase from what I was doing before (but actually I wasn’t doing anything during Covid because of….Covid). And probably the most helpful of everything I did.

I did, unfortunately, end up needing an emergency chiropractic appointment for my hiatal hernia-but I only needed one! And that’s certainly an improvement! But in August when I had to postpone making appointments, I definitely noticed a difference in how I felt and how I moved-or the difficulty I felt in trying to move.

——

By the time this is read, I will have been out of this job for almost two months and back into my regular teaching gig (or, as regular as covid allows).

As the end of my time working this gig neared, I found myself struggling more and more with my body burning out. My teaching overlapped with the last few weeks of working at the end of the summer. My legs started buzzing regularly and I felt a lot of discomfort standing and walking. It was becoming more difficult and the shifts felt longer and longer (despite them not being any longer at all).

But as a bonus, some of the adaptations I’ve made have influenced my decisions as I’ve gone back to teaching. And I may never have discovered them had I not been working this summer job. My wardrobe, for one has permanently changed and that has made a hugely positive impact on feeling less pain during the day. So much so, I can’t believe I didn’t make the switch sooner.

I still keep coke around as a backup option, and have some small cans at my studio in the mini-fridge. I’ve been drinking less and less; as I’m able to have more breaks in my schedule now. But having a readily available and cheap way to make it through a rough few hours has helped me relax more about having an onset of symptoms.

I’m so grateful that I was able to make it through the summer season with my commitment and be able to make some money during such an economic downturn for the whole country.

And now, I hope I can learn more about the new normal I was discovering prior to Covid turning everything upside down.

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