A Day in the Spoonie Life
Let me tell you about my day.
To start off, you need to know how horrible yesterday was, and the day before.
Sunday, I woke up hurting in almost all of my joints. My back and neck, both hips, right knee, both wrists and many of my finger joints but most of all my thumbs hurt horribly. There’s not much to do when that much of you hurts, except lie on the couch with heating pads and electric throws and try to amuse yourself. The brain fog was bad enough I couldn’t even really focus on a show with a plot, so I watched a lot of YouTube videos. At one point I put on a documentary series so I could semi-focus on it while I tried to take a nap. (Tip: when you hurt too bad to sleep, some kind of sensory input like a comforting TV show can sometimes distract you enough to sleep though it sounds counter-intuitive.) Napping has the unwelcome effect of making it even harder to get to sleep at a normal bedtime as well, but I risked it because I was just so exhausted from the pain and brain fog.
I was disappointed because I am trying to participate in the NaNoWriMo (National Novel Writing Month) Challenge, and couldn’t manage more than about 600 words over the entire weekend. I haven’t been able to participate in it for years because I was working full time and in school, but now that #gradSchoolSucks is over, I signed up with the hope I might finish it for the first time. Right now, I’m behind by about 9,400 words. I’m not throwing in the towel, but there’s a good chance I won’t make it.
Long-time readers may remember that I had a list of things I wanted to do in 2018 after I was finally done with school. It had fun things like seeing friends more often, taking up belly dance again, learning to swing dance, and hobbies I wanted to take up again. NaNoWriMo was on that list. Most of the other things on my list I’ve had to abandon thanks to my chronic illness. So I’m really disappointed and frankly angry as hell that the one thing I thought I could count on may also fall prey to this damned illness.
Dawn broke yesterday morning and I was hurting even worse than on Sunday. I gave serious consideration to calling in sick. Or working from home, as that’s an option for me with my job. After waffling back and forth for a while, I finally decided to drag myself into the office. I’d called in sick only a couple of weeks ago after a horrific day of out of town meetings combined with a cold front and 4 hours on the road completely drenched and freezing (a WHOLE ‘nother story) threw me into a flare and I woke up the next day virtually unable to move. I don’t want to start being “that employee” and I certainly don’t want my boss to have to take up slack for me related to my chronic issues. I knew as bad as I was feeling that I’d end up dozing on the couch with my laptop for much of the day, and not be productive working from home. So I took a hot shower and drove myself to work.
Normally I am a decent example of “you don’t look sick”. I work at it quite a bit to not put my pain on display and prefer to let most people think I’m doing fine even if I’m not really. Yesterday I apparently didn’t manage it, because more than one coworker asked me if I was feeling okay. I couldn’t even muster the energy to fake it and admitted that I was not having a good day.
I’m proud of myself for dragging myself through the day and being mostly productive. I got home, took pain meds, ate, watched some TV, took more pain meds, and went to bed early hoping that it would be a new day and I would feel better.
No such luck.
My joints didn’t hurt as badly as they did yesterday, so that felt like a win. But I had a bit of a headache brewing when I woke up. It didn’t seem like a migraine, so I popped some Excedrin with my morning meds and got on the road with my protein coffee shake.
About five minutes down the highway, the migraine made itself known. Normally, I don’t get overly nauseated with my migraines, but occasionally I do. This was one of those occasions. I’m driving 60 mph (or more, I plead the 5th on that topic) on an interstate, and I’m having all of the signs that my few swallows of protein shake along with my meds are threatening a rapid return. So fighting back the nausea, I carefully weave my way across three lanes of traffic so I at least have a shoulder available if the threatened return becomes inevitable, while digging by feel in the glove box for an emesis bag and turning the A/C up to high. (Yes, prepared Spoonies – especially nurses – have emesis bags in their cars.). It was a precarious several minutes, and I missed my express lane entrance, but my stomach finally quieted down, and the Excedrin had apparently been just in time because the migraine had disappeared by the time I got to my parking garage. Of course, there’s the “post-drome” aka “migraine hangover” but I’m well experienced with working through those.
I think I managed to hit the “you don’t look sick” bar today, so that’s good. What a lot of people who don’t deal with chronic pain don’t realize is how much it drains you. I’ve also learned that pain in the hands is so much harder to ignore than leg pain. I’ve had my share of injured knees and ankles, and I can prop those up and ignore them. Pain in the hands, though… that’s a doozy. Typing, picking up the phone, holding a pen, picking up the water mug – everything makes the hands hurt worse. Last night I dug out my compression gloves, and while they’re not exactly high fashion, they help with pain and swelling. I wore them most of the day, and alternated menthol patches with my topical prescription anti inflammatory. There’s nothing like smelling like menthol at the office to make you feel ancient, I gotta say.
I ducked out a bit early for an appointment, and hoped it wasn’t obvious I’d bailed a little early two days in a row. Honestly, I work with a bunch of great people and our office is pretty flexible about hours and such. But as a Spoonie, and one fairly new to the job, I worry about appearances.
Now I’m home, and luckily my pain remained constant today and didn’t get out of control, so a normal dose of pain meds should let me get good sleep tonight. Here’s hoping for a better day tomorrow.
I’m not typing all of this out as a whine. Well, not much anyway. I’m sharing all of this as an example of the choices Spoonies have to make every day. If you don’t struggle with chronic illness, or have someone in your life who does, I want to give you a glimpse into the struggle we face.
Those of us with chronic migraine have to try and divine whether this headache needs a triptan, or if there’s a good chance Excedrin or Advil could take care of it. This is because most insurances restrict us to 9 doses of triptan a month, and some migraine attacks take 2 doses to resolve. Also, taking the triptans too often can set us up for “medication overuse” headaches. Despite the other neurological symptoms, despite the pain, we have to weigh if this attack is “bad enough” to treat it with the prescription meds.
When we have other kinds of pain that respond well to opiates, we again consult the crystal ball. Is this pain “bad enough” to take a dose? Doctors are hesitant to prescribe opiates now, so we feel the need to ration what we have. Long term, opiates stop working as well for chronic pain, so that’s in our minds as well. Do I think tonight’s pain is likely to be worse than what I will have next week or next month, or should I try and manage it with things that don’t work as well?
Then there’s the required “pacing” which is a code word for budgeting and reserving our energy so we can do the important stuff. Lately, I’ve had enough energy on a weekend to do ONE thing, and ONE thing only. If I’m scheduled to medic for the roller derby league on a Saturday night, I can’t plan on doing a single other thing that weekend. No grocery shopping trip, no visiting family or friends, no chores around the house. If I simply must do some house cleaning, that’s ALL I can do that weekend, and I’ll likely have to pay for it with the next day being a don’t-leave-the-couch day.
Jobs create another kind of stress and worry. We don’t want to be “that employee” and we don’t want to burden our team by our absence. One of the driving factors for my leaving both ER jobs that I absolutely loved, was that I knew my health was declining and every call out overburdens your team. Many employers are not understanding of frequent time off for illness, and we worry about losing our job and being unable to support our families on top of feeling like we don’t contribute enough to our work team.
Every day when we wake up feeling like death warmed over, we have to try and figure out if it’s bad enough to call out or if we think a worse day might be around the corner and we can’t “burn” a sick day. After all, it’s not like we’re contagious and putting our coworkers at risk. It’s just our own pain we have to deal with, and when pain’s a daily experience, what makes this day enough different to call out? In my case, winter tends to have more frequent migraines and upper respiratory infections. My new migraine preventative medication may make a difference this year, but I won’t know until we get further down the road. I need to reserve my PTO days not only for budget reasons, but to not be “that employee”.
Spoonies like me who are still able to keep working full time walk a tightrope. We’re glad we’re still able to work (many aren’t) and support our families. But many of us also feel we spend all of our off time recovering so we can go back to work, and we lose too much of our personal and family lives. Some days we just can’t make it in, or if we do we’re not at 100% and we feel guilty either way.
So yeah, I’ve had a couple of rough days already this week. I’m hoping the worst is over and the rest of the week will be an upswing. I’ll make it through, either way. After all, I have a 100% record of making it through the day, and that’s something.