I like to call myself an aggressive optimist.
What do I mean by that, exactly? Well, being an optimist is fairly self-explanatory, I think – I am definitely a glass-half-full, things-will-get-better, the-sun-will-rise-again-and-everything-will-be-ok kind of person, and, on the whole, I like that about myself. I tend to see the good in situations, and in people, where others might focus on the negative. I am usually quite bright and positive about how things are going to turn out.
When it comes to chronic illness, though, my optimism can definitely become a problem.
This is where the aggressive side of my optimism comes into play. It’s all well and good to think that the day is a good one because I managed to read a bit, and to be optimistic about that; it’s another thing entirely to be optimistic when someone asks, “So, this room has a flight of stairs up to it, but that isn’t a problem, right?”
My answer is usually: “Oh, sure, that’ll be fine! I can do that!” Because I’m optimistic, right? I think, surely it can’t be that bad. If I at least have a go, then it might turn out fine! Besides, what’s the worst that could happen?
A lot of bad things, Jase. A lot of bad things could happen.
Because, in reality, when I am this optimistic about my levels of ability, I will get up out of my wheelchair and hobble over to the stairs, hang on to the bannister and begin to climb. I’ll get up two steps and then the pain will start – shooting up from my ankles, locking my knees, aching in my hips. I’ll have to grip tighter to the bannister to compensate, but I think, that’s alright, I haven’t fallen, I’m still upright – I can keep going!
So I manage another couple of steps, but, because I’m holding on tighter, my wrist starts to complain loudly. Then my vertigo will begin acting up and the room will start spinning around me, and I’ll probably tilt sideways.
But hey! I’m not on the floor! I can keep going!
So on I go, up another couple of steps, until my legs finally give way and I end up sprawled all over the staircase, probably in public, with every muscle screeching with pain, and I’m stuck because I can’t get back down.
I usually need Charlotte to come rescue me. Or slide down on my bum, which is embarrassing and hurts.
Not a good idea.
And yet I never learn! Every time someone asks me to do something that I might struggle with – pick up something they’ve dropped, or walk a little bit further without a break, or stand up in a queue for a while – I will always be optimistic and think, yes! Of course! I can absolutely do that! Even if I know that logically it is a Very Bad Idea and will more than likely end in disaster, I can’t shut off that loud part of my brain that is aggressively shouting You can do it! You can do it! You can achieve anything if you try!
Unsurprisingly, this has got me into a lot of sticky situations in the past.
I think the worst time was probably when I was pretending to be as well as I could when I was out with Charlotte and her dad. We were on the Isle of Man exploring the mountains and beaches, and it was astonishingly beautiful, and we were driving around mostly so I wasn’t using too much energy. When we were outside, I was in my wheelchair, so I was managing to do quite a bit. I hadn’t been properly outside in the countryside in a really long time, so I was really enjoying the peace and beauty of it and I did not want it to end.
So, when I felt the first bits of tiredness come on, I tried to ignore them. And when Charlotte’s dad suggested going to a museum despite a forecast of rain, I said, “Yes! Absolutely! I would love to!”
I love museums, you see, and I was having a good time. I thought, maybe it will turn out alright! Maybe I’ll be ok today! You never know!
So we went. The museum was mostly outdoors, so we were exploring, and then the heavens opened. It absolutely bucketed it down; the rain was cold, the sky was almost dark, there was no sign of the sun, and it was freezing. Charlotte and her dad were running through the rain while pushing me, but the ground was grassy and rocky and not very good for wheelchairs, so I was being bumped around a lot while being simultaneously drenched. I didn’t have a raincoat or my blanket with me; a pretty bad oversight, if I’m honest.
I was freezing. If you aren’t a regular wheelchair user, you may not know this, but it is very cold to be in a wheelchair because you aren’t moving at all. When you’re walking or running, your body is generating heat because of your movement, but when you’re stationary in a wheelchair you get much, much colder because you aren’t moving. Add to that freezing cold rain that felt like pellets against my skin, I was shivering and my teeth were chattering and I swear I turned blue. My jeans were plastered to my legs, the denim so drenched that it actually changed colour.
We wanted to see the rest of the museum despite the rain. Of course I agreed; although I was in a great deal of pain and frozen to the bone, I wanted to see the rest of it! I was having a good time, and I wanted to enjoy the day out. Plus, I didn’t want to appear too sick in front of Charlotte’s dad (ridiculous, I know now, as he never would have judged me, but it’s easy to be insecure about these things). So we persevered.
But as we listened to the guide explaining the next part of the museum, I quickly realised that I’d pushed it too far. I wasn’t processing what the guide was saying even though I was listening as hard as I could, and I started to become unaware of my surroundings – I’d look around and not recognise where I was, and it would take a few seconds for me to realise I was with Charlotte and her dad, and in a museum, and in my wheelchair. My brain was shutting down.
That is never a good sign.
Add to that the increasing pain in my body, and I was really in trouble. My wet clothes were clinging to my skin and seeping through to my muscles and bones, the cold attacking my joints until they were crying with pain and I just wanted to curl up in a ball and never move again. Even sitting upright was becoming excruciatingly painful; my back was bending, my spine creaking, and my muscles bunching up tight and tense in an effort to keep me from just falling out of the chair, which is honestly what I really wanted to do. The floor looked really appealing right then, even though it was muddy and soaking wet. I just wanted to be horizontal.
So, eventually, I said something. I explained to Charlotte and her dad that I was starting to flag and we should probably get home – I was shivering, my teeth were still chattering, and I basically felt like a sentient icicle. Barely sentient at that; my brain was still shutting down, and my words came out all slurred and funny, and it was so difficult to get the right sentences out of my mouth. Luckily, Charlotte is quite used to me crashing like that, so she was able to translate to her dad what was happening and they got me out.
So back to the car we went, and once I was inside and warm and wrapped in a blanket that we always tend to keep in the car, I felt a little better. I was numb and shivering still, but I didn’t feel quite as out of it, and my pain was a little more bearable.
But, as we started driving, my vertigo and dizziness decided to make itself known, and everything started spinning. The roads on the Isle of Man are quite windy and narrow anyway, so coupled with my constant feelings of going in circles I very quickly became nauseous and disoriented. I had the beginnings of a headache pulsing at my temples, and my pain decided to make itself known again as the effort of holding myself upright in the car became more and more difficult. My back was complaining, my knees were screaming, I was still soaking wet and freezing, and all in all I felt pretty miserable.
But, I thought, I’m outside! It’s great! The rain has stopped and the sun’s come out and it’s pretty! I’ll be home soon, it’ll be fine!
Do you see why aggressive optimism can be a really, really terrible thing?
Anyway. Charlotte could tell by this point that I was really struggling – I think I was barely answering her questions, and blinking confusedly at her whenever she spoke because it was taking me about thirty seconds to process anything she said, which is always a warning sign. So she got me to lie down, and I closed my eyes, which helped, but being sideways in a rocking car on windy roads with bad vertigo isn’t exactly comfortable. I was incredibly nauseous by this point, and my side hurt where I was lying against the car seat and my shoulder ached where the seat belt was digging in, but I couldn’t process how to explain to Charlotte that everything hurt because my brain was now moving so sluggishly that I couldn’t actually articulate anything beyond “bad, bad, bad”.
By now, pretty much my whole body was screaming at me BE HORIZONTAL IN THE DARK AND QUIET AND WARM RIGHT NOW OR WE ARE GOING TO DO SOMETHING DRASTIC! I went sideways in the backseat again with my head in Charlotte’s lap, and she stroked my hair while I lay there with my eyes squeezed shut, in horrible cramping pain, freezing cold and shivering, exhausted and unable to process anything. She was talking to me, but I couldn’t for the life of me figure out what she was saying, and everything felt so overwhelming that there were tears in my eyes.
Charlotte figured out I couldn’t really communicate properly anymore, so she resorted to our trick for when I’m very out of it – she’ll squeeze my hand twice, and if I squeeze back then I’m aware that she’s there and I’m not actually unconscious. She also gets a pretty good idea of how with it I am based on the strength and speed of my squeezes – fast and strong if I’m quite well, slow and weak if I’m not.
Pretty sure right then I was very, very slow to respond, and squeezed very weakly because my muscles were all crying in protest at still not being in a bed.
Eventually, we got back. I don’t remember how I physically got into the house; probably leaning very heavily on Charlotte with my eyes shut, trying not to fall or trip and moving as little as possible to try and help the pain. My clothes were still wet and sticking to me, I was shivering pretty continuously, and I could barely understand where I was and who I was with. I just focused on following Charlotte’s directions and trying not to completely lose consciousness.
I didn’t make it to the bed.
I was swaying so much that Charlotte deposited me on the nearest flat surface once we got inside – the sofa, as it turned out. I lay down as soon as I was on it and finally let myself relax; I think I was able to process enough that I was now somewhere where I didn’t have to move again, and I could finally let the whole crash hit that I’d been staving off the whole time we were out.
I closed my eyes and let go, and everything went to hell.
The headache became excruciating, until I could see flashes of bright light behind my closed eyelids and the pain felt white-hot. I couldn’t move my head at all, or touch my chin to my chest, or even twist my neck into a more comfortable position; I was literally just face-down on the sofa. My clothes burned where they touched my skin, and I had to whine and cry until I managed to get across that I needed to take my watch and jewellery off because it felt like it was branding me (thankfully, Charlotte knows about that symptom and she was able to get it off me when she realised what I was distressed about – no mean feat when I couldn’t talk at all by this point, but instead just make unhappy noises).
The pain was everywhere; in my joints and muscles, from where the sofa touched me, from holding myself in one position. I melted against the sofa as much as possible but I can’t even describe to you the bright, horrible, searing pain that flared through every single movement and burned in my limbs even when I was completely still. It was impossible to be comfortable. The light through my eye mask was searing hot against my eyes, and I curled up in a ball and tried to hide behind my arms until Charlotte realised what the problem was and threw a blanket over me. It helped, a little.
Then the twitching began. My muscles started to jerk randomly and unpredictably, my legs jumping and twitching, my shoulders painfully shuddering, my back bending at my hips and twitching uncontrollably. The pain of each movement was indescribable. Every motion felt like my body was on fire, and the movements were getting faster and more frequent, hitting every part of my body, even my fingers and my eyelids, until I felt like a ball of horror. It felt like it would never end.
I became completely unaware of my surroundings, though I don’t think I ever lost consciousness fully. I was aware of my pain and the feeling of the sofa under me and the blanket over me, but I couldn’t process what they were or why they were there. I didn’t know where I was beyond that I was on a flat surface, and whenever I tried to stretch, my muscles would scream and the twitching would become more intense.
I lay as still as I could and endured it.
Sometimes, I could feel Charlotte squeezing my hand, and I tried to squeeze back, though I’m not sure how successful I was because I didn’t really have much control over my limbs. I think she talked to me a bit. I know she stayed with me the whole time, which was such an unimaginable comfort, because it is incredibly distressing to not understand what is happening to your body and to be in such extreme discomfort when you can’t process where you are or what’s going on around you. But I knew she was there, and it helped immensely.
When I next became more aware, the twitching was finally slowing down. I felt an intense, dull ache in every corner of my body, as if I was weighed down and bound to the sofa. I couldn’t lift my head. I couldn’t even twitch my fingers. Bone-deep exhaustion held me flat against the sofa and I couldn’t fight it; it was as if I could feel gravity physically holding me in place, and I’d lost all ability to move against it. Even thinking about moving made me want to cry.
My thoughts were still very sluggish, but I was able to process where I was and what was happening a bit easier. I realised that I’d just had a seizure (my second serious one ever). My throat was parched and my lips were painfully dry and cracked, but I couldn’t yet speak to ask for water or even figure out that water was what would solve that problem. I was also in immense amounts of pain, but I couldn’t figure out how to ask for my painkillers. To be honest, I don’t think I was really aware that my painkillers even existed at that point.
But eventually, slowly, I recovered. I was eventually able to roll over and sit up enough to drink some water and swallow the tablets that Charlotte passed me, and in time I was able to sit up properly, get myself to bed, and sleep it off. But it was a wholly unpleasant experience and not something I want to put myself or Charlotte through again.
It isn’t only distressing for me to be in that situation, after all; it’s horrible for Charlotte to see me like that when she knows there is absolutely nothing she can do to help me. By that point, it’s too late. I needed to intervene far earlier.
This is what it looks like when I’m having a seizure:
That’s where aggressive optimism can become deeply harmful.
Instead of being optimistic about my abilities and pushing through to do more in the hopes that I would miraculously get better, I needed to recognise my limits and stay within them. I needed to stop before I hit the wall. I needed to say, “Actually, I’m starting to feel a bit rough, can we start heading home? I think a crash is imminent.” I wouldn’t be ruining anyone’s fun; what really ruined the day was me having a seizure on the sofa and becoming immobile and nonverbal for many long hours. Never mind the fact that it took me three days to recover from the seizure enough that I could go outside again.
It is dangerous to overestimate how much you can do. I have proved that time and time again, but do I learn? Nope.
I see it sometimes called ‘toxic positivity’ on the internet; this belief that you can do whatever you want if you just stay positive. It isn’t true. It’s dangerous for people like me who take it too much to heart and don’t stop when we need to.
I’m trying to be better. I’m trying to pay more attention to the signals my body sends me, and if I start to feel rough or sore or out-of-it, then I try and get myself back to a horizontal safe space quickly enough that I can rest before I hit full-on crash mode and have a seizure, or something equally horrific. I try and stay within my limits and pace myself and recognise that I am not superwoman and I can’t do everything just because I really want to.
Optimism can be a great thing; as I said in the beginning, I generally like that I am an optimistic person. I like that I can delight in little things and see the positive in bad days and be happy with any achievement, however small. What is dangerous is when I think that I can do anything, just because I want to, and what’s the worst that could happen? That’s when it becomes unhelpful, and I need to remind myself that I, just like every other human, have limits, and in fact my limits are a lot more severe than most due to my chronic illness.
I need people to step in and tell me to stop. I need to be reminded that if I keep pushing through, I will crash, and I will crash hard, and it will take me a long, long time to recover. It isn’t worth it. No amount of sight-seeing or quality time with family is worth the pain and horror and utter exhaustion of what my illness will give me if I do too much.
It’s a hard lesson to learn, and I’m certainly still learning it – but I’m getting there. Every day I’m getting a little better at saying no, and resting, and going against my natural instinct to try and do All The Things. And, amazingly, it’s refreshing. My optimism comes in handy, actually, because even if all I manage to achieve in a day is having several naps and waking up for five minutes to take my tablets, then I can think, “Hey, I did really well at sleeping today! AND I took all my medicine! How awesome is that?”
Optimism isn’t inherently bad. In fact, I’d go so far as to say it can be very helpful to someone living a chronically ill or restricted lifestyle. Let’s just maybe stop it from causing utter disasters, shall we? (Yes, I’m looking at you, Jase’s brain. Sometimes, it is time to stop, and that’s perfectly ok too).