So, despite my best intentions to blog at least every other day, I’ve been away for a few, and unfortunately, not voluntarily.
I like to have my own little way of conceptualising the spoon theory, because some tasks take much more out of me than others, but I am usually able to complete roughly the same number of little tasks per day. For me, I visualise this in the form of teaspoons and tablespoons. On a normal day, I probably have about 4 tablespoons, and about 6 teaspoons.
A tablespoon is something major – half a day’s work, a few hours of uni, or a dance class. Depending on how I’m doing with pain and mobility, unfortunately showers often fall into this category as well. Because I often run out of tablespoons, and want to save my teaspoons for the daily necessities, this means that I often have to bow out of social engagements or even family time at home, because I need to recuperate.
Teaspoons are the more manageable things – having a meal, doing some study or colouring, writing a post, or watching a movie.
Friday was a big day for me, not only did I finally receive some answers in the form of a formal diagnosis and some lines of enquiry, but I also had a rather emotionally raw evening where I think it finally hit me that I am chronically ill, and that it’s big and scary and frustrating, but sometimes it also comes with some unexpected blessings.
And all this was book-ending what would have already been an incredibly hectic day. A day for which I had not really prepared for, having already borrowed from Friday’s spoons by pushing to work on Tuesday and Thursday, much earlier than was probably a good idea. Then, tablespoon one – the rheumatology appointment, which despite being incredibly validating and hope-inspiring, also became tablespoons two, three and four, as not only was I having to self-advocate as a patient, but also complete physical assessments whilst injured, and navigate a part of the city which is really not friendly to people with impaired mobility. So now – I’m already out of tablespoons. And its 10:30am.
Now, the juggling begins. I used a teaspoon to get the bus back home and climb the 53 stairs to my front door, and the 17 to my room upstairs. Needless to say, I don’t think I ever made it back downstairs. Then, because I was already exhausted, I used another teaspoon to do some colouring. I needed to stay awake and keep my brain active, but I didn’t have the energy to do anything else.
But I had to, so I started borrowing from Saturday’s spoons. I used two tablespoons for one of my major university assignments, a take-home exam for IT Law, where I had to submit two 1200 word essays. I then used another to do a 2.5 hour exam for Family Law, where this time I had to complete 10 “short” answer questions, many of which were incredibly vague. By this point, I was exhausted. I used my third teaspoon of the day to take my medications and stumble into bed, and one last to do some blogging and angsting. I hoped desperately that despite the upcoming spoon deficit, that I would make it through Saturday reasonably well.
It did not go well. I was exhausted, I had woken up with what theoretically should have been one tablespoon left, but in reality I had pushed so hard on Friday that I had probably three teaspoons, if that, all of which were used to eat and drag myself to the bathroom.
On Sunday, I had some tablespoons back, and my usual supply of teaspoons. I was still not up to full strength though, with some of the worst brain fog I’ve experienced in a while, and had a Philosophy essay due which did not help matters with its convoluted question and poorly-written rubric. At about 6pm, I finally had a general idea of where I wanted my essay to go, it wasn’t due till midnight, and adrenaline helps me write anyway – plus, I had a tablespoon up my sleeve that I’d been saving all day.
At 6:15, Mum called me down for dinner; pizza, which was delicious, if a little spicy. For some context, I had a stomach ulcer in 2014, and have been taking medications for ongoing symptom management, such as mild cramps after eating certain foods, including chilli. I can normally have a little though if it’s already part of a dish, like cooked into a sauce. After all, after all this time, what harm could a tiny bit of chilli really do? Mum bought the vegetarian pizza especially for me, and I always feel like I’m being unreasonable because I’m not “technically” allergic.
What I did not realise was that, although it did not taste that spicy, I was actually ingesting chilli seeds – the first contact I’ve had with real, pure chilli in almost four years. Within 5 minutes, I was experiencing violent cramping, within 15, I was kneeling on the bathroom floor, unable to keep anything down, including my stomach medications. After an hour, I finally convinced my Mum to take me to A&E for the second time in two weeks, where over the course of four hours they pumped me full of strong stomach and pain medication, and I received a diagnosis of acute gastritis. I didn’t get to leave the Adult Acute ward until just after midnight. Needless to say, I didn’t complete, let alone submit my essay by the deadline of 11:59 Sunday night.
So, where too from here? Well, I spent Monday running on minimum spoons, dragging myself out of bed to apply for a second extension on my Philosophy essay (the Sunday deadline had been extended because of complications with my hip), and to see my physio and psychologist in the mid-afternoon, only to crawl right back in again at the first available opportunity.
Today, I went back to work, because I can’t afford not to, and I’m using up my second-last teaspoon on this post. Tomorrow, my boyfriend is going to help me finish my essay – to be a sounding board and to help keep me motivated, on-task, and well-fed. I’m really worried that my second extension won’t get approved, especially since I received a personalised email from the unit convenor chasing me, asking if I would be submitting soon, but I’m trying to put worrying about that aside and just slowly plodding through things tomorrow.
So, what’s the moral of this long, spoon-less tale? At least for me, I need to start recognising and accomodating for the severity of my health conditions. I’ve been trying to pretend I’m fine for so long that I’m actually making myself worse, and now it’s starting to put me at serious risk of harm.
I need to learn to count my spoons every morning, and, at least for now, count tomorrow’s spoons as well, in case I need to set some aside. I need to recognise which tasks are tablespoons, and try and plan them out so that they are balanced throughout my week, and have some planned recovery days as well.
I need to learn how to stand up for myself, even to my family, and say “it might seem small to you, but for me, this has a really big impact” – whether it’s in relation to putting my foot down to prevent harm, or in changing the way I do things to suit me better.
Well, that’s me for the evening, I used up more teaspoons than expected writing this post, and I really need some sleep. I just wanted to say a huge thank you to all of the Zebras and wider Spoonie community, especially those of you who I have talked with individually. You keep me motivated, and you give me hope.