You probably read that title and thought “Um, no? I don’t want to?” Yeah. Cages aren’t fun. That’s what chronic illness is like.
One of the hardest things about being sick is trying to explain it to people who haven’t experienced it. It’s difficult and exhausting to search for words over and over, and to know that no matter what you say, it’s not possible to force people to understand. That’s no one’s fault, it’s just the reality of being human. You can’t ever really know what it’s like to be someone else.
So I thought I would write a bit more about what it’s like being me at the moment, and also share some resources that might help describe that.
Note – some of this is very personal and probably kinda difficult to read. I don’t think it’s enough to warrant a trigger warning, but, just a headsup.
Being ill shrinks your reality. Physically and mentally, I am so limited. There’s a lot of things I am just completely unable to do, which contributes to the feeling of being trapped in a small space. That small space often takes the shape of my bedroom, which, granted, is a lot comfier than your average cage but no less claustrophobic. My pain creates the cage. It forces me to sit still, to not do the things I enjoy doing, to take pills I don’t want to take. It takes away my power, my freedom. It suffocates me.
It can be hard for people to understand why I behave how I do now, especially if they knew me before I got sick. I attribute this to the fact that I now spend most of my time in “survival mode.” I have to make difficult choices, and I have to be selfish. I hate that, I hate that I have to do that, but that’s how it is. I won’t get well unless I put myself first. That means staying home when I want to go out with friends. It means not answering half of the messages I get. It means eating eggs three days in a row because I’m too exhausted to cook or go to the supermarket, and I just need to put the bare minimum of nutrition into my body in the easiest way possible.
I am not choosing this life. Why the hell would anyone? I am doing everything I can to get well. Unfortunately, that means being all about me. And that sucks.
A day in the life
I usually wake up feeling like I haven’t slept at all – and sometimes, I haven’t. My pain gets worse at night, and so does my anxiety, so I have insomnia.
I don’t let myself take pain killers until evening, because if I took them every time I hurt, well… yeah. So I just get up in pain.
I start with a healthy dose of beating myself up for not getting up earlier, and for not having a job to go to. I loathe being unemployed. So much of my self-worth used to be invested in my work. I questioned a lot of things when I had to give that up.
I think very hard about breakfast. I think about what foods won’t hurt me, and what will give me the most nutrition because my body sucks at processing stuff so I only get a small amount of goodness out of what I eat.
I worry about my bank account. I worry about the fact that nutritious stuff that doesn’t hurt me – breakfast is gluten free bread, olivani spread, and Pic’s peanut butter – is so much more expensive and so I have to try and prioritise good food.
I worry about the commitments I’ve made for the day – doctor’s appointment, therapy, maybe coffee with a friend – will I actually be able to get there? And if I do, how much will it cost me – both in dollars, and how much pain I am in afterwards?
If it’s a good day – ie, pain is managable and energy levels are ok – I might be able to get the bus into town. I like getting the bus. It gives me the tiniest sense of the independence I have lost. If I’m not well, I’ll have to ask someone to take me to my appointments, and I hate doing that.
Before going to town, I’ll plot my route very carefully so I know I’m getting the most done with the least walking. Walking hurts me, and it exposes me to people asking me about my fucking cane.
If I’m going to the doctor, I’m probably getting a vitamin shot, which hurts like hell but helps my energy levels so much. I’m probably also getting any number of pills, so I have to make sure I have enough money for scripts.
If I’m having coffee with a friend – well, I don’t drink coffee any more. My body hates it. So I get boring herbal tea most of the time. Sometimes I will treat myself to a hot chocolate, but I’m not supposed to have sugar. Yep, my body hates that too.
I have to make sure that I have enough money for coffee, and then I have to be gracious if my friend offers to pay for it. It’s a weird social dynamic, being the poor one. I always feel super grateful when people pay for things, but I don’t want them to feel like they have to. And I don’t want to feel like charity. There’s no right answer here, it’s a total grey area, and personal to everyone.
After that, I’ll probably be exhausted. If I’m lucky whoever I am with might give me a ride home, otherwise I have to time things for the bus, which only goes once every one or two hours.
When I get home, there’ll be a million and one things to do. Being sick doesn’t make the world stop. I still have housework and homework and emails and writing commitments. Knowing me, I’ll force myself to do some of this stuff, even though I’m already in pain and even sitting at the computer makes that worse.
Dinner is always a chore. I have so little energy by the evening, it’s hard to even think of what to make. Once I’ve considered cost and liklihood of pain and energy something will take to cook and nutrition needed and implications for my body dysphoria, I’m left with so few options. I often eat the same thing several nights in a row because I just can’t cope with it.
Most nights I’m in bed by 7pm, 8pm at the latest. I don’t sleep, though. I beat myself up over the fact “normal people” are just getting home from work at this time, or out with friends, and here’s me – in bed. Pathetic. I’m restless and anxious and sore, so sleep is pretty hard to come by. I’ve tried everything under the sun to cure my insomnia, and nothing works except pills I hate taking. So I finish the day feeling guilty for taking medication I need to survive.
Everything that I thought about life has been altered by being like this. All the things I took for granted amaze me now. Imagine being able to do an 8 hour day and then go out for dinner with friends! Imagine being able to eat anything you want and not have your whole body ache if you order a salad at that dinner and it ends up having, say, tomatoes in it? I get very scared because sometimes I can’t actually remember what it feels like to be healthy. But I won’t ever go back to being the person I was before I got sick. I’ve learned too much.
Here are some resources that may help.
Spoon theory – this is a way to explain the lack of energy I have. This is not just being tired. This is extreme fatigue and it’s a whole different ball game.
Hyperbole and a Half – Hyperbole and a Half has a couple of comics about about depression. It’s incredibly accurate and easy to read. Very valuable.
Jem’s work – my friend Jem has experienced chronic illness and I find her artwork really describes what it’s like. These ones in particular:
I often feel like this – very low, huddled around myself, with my heart just leaking out of me. I used to have such a full life, and now I try to hold onto what I have left, but the illness drains it away.
This reminds me of my cage. I’m stuck here. I can’t move. Also it kind of has notes of crucifixion to me, which is how it sometimes feels when you’re public about things like disability and WINZ.
I think this is enough, for now. I hope it has provided some insight, and doesn’t read like one big long moan about how my life sucks. It doesn’t, really – it’s just very challenging. And like I said, I am learning so much. I wouldn’t go back to who I was before I was sick.
But if I could get well tomorrow… well, yeah. I’d take that in a heartbeat.
I understand all of this. kia kaha. I was lucky enough to attend a 3 week pain management course at Burwood which helps me to cope with minimum pills, but the pain is still there. I love the spoons as a way of explaining things, both to others and myself. Beautifully written!! Thank you
I wish so much that I could take all the pain away for you and open the cage. This speaks to me so much. Thank you for taking the energy away from other needs to write this x.