I skipped work today to hang out and go to the gym. it was an awesome decision—work is a nightmare and I’m quitting next week. I desperately needed the time off and I’m so happy I did it. except I’ve been running on fumes, and as soon as I gave myself a second to breathe I crashed like you wouldn’t believe.
That + my heart being cranky about the gym + having to stretch my meds means I am spectacularly out of spoons right now.
I have an autoimmune disease. The following has helped me.
1. Appropriately medicated, and with appropriate lifestyle choices, I am mostly okay now. You should not look at particularly deep troughs as indicative of what the illness will be like going forward; those bad days are not your life sentence. Living with a chronic illness means there are good patches, and bad patches. These can be intrinsic to your health, or a reaction against external conditions, but always remember when you’re in a bad patch that there will be good patches, too. When I look back to before I was diagnosed and immediately after (where you are now), I marvel at how much I was able to do, and what I put up with because it had snuck up on me slowly.
2. You have a chronic illness. You may not be able to do things you did before, the same way you did them, at the same intensity. It sucks, and it’s hard - it took me literally years before I learnt my lesson enough to behave with relative consistency, and I still stumble every now and then - but it’s a fact. It felt a bit like giving in, for me, but I needed to acknowledge my illness; it did make me different, and it did change my needs and lifestyle, however much I hated it. It sounds weird, and maybe it’s just me, but I needed to make a commitment to my illness - really, a commitment to myself: I will prioritise my quality of life and needs.
3. Speaking of priorities, I needed to figure out what was truly important, and leave the rest behind. This was a lot easier when I realised there would be myriad opportunities to pick back up, or realign my priorities later on. In a bad patch - especially in a bad patch - you have to accept you cannot do everything, or sometimes even very much, and that’s okay you’re sick. Don’t waste time on shit, and definitely don’t waste time feeling guilty. […] If you can do something to ease your pain, you do it. You are in pain; they don’t give out medals for suffering, and the mental and physical resource you gain can be deployed elsewhere.
4. Neither be ashamed, nor afraid, to ask for help. You have a chronic illness; you have special needs; you are entitled and eligible for support. It is your right. The government, and your workplace is obligated to support you, and people who love you should do so as well.
I wrote a comment on the blue, just the other day, talking about how having a chronic illness can be very isolating, feel like you’re living in your own country at times. I will not lie: It is very difficult for other, healthy, people to understand what you’re going through, and what it means. […] You don’t have to let your illness define you, but is an undeniable part of you at least for now, and the more people that understand what that means the easier things will be for you. When you have a chronic illness you need extra support, there’s no getting around it. Do what you need to do, to get it.
— this comment by metafilter user smoke is very relevant for chronic health issues generally and it’s made me feel better over the past week or so, especially: “those bad days are not your life sentence” (via aquamirage)
byebyedollface asked: I just discovered your blog today, and I love it. I see a lot of myself in you. I, too, had open heart surgery and it sucked. I re blogged a photoset of you with those sticky things on/around your chest. It brought back memories of trying to get that adhesive off my skin. It was annoying as fuck (excuse my language). How has your experience with this shaped who you are? It did a lot for me, and it's nice to know someone who is going through a similar enough situation to where I can discuss it.
Thanks! I’m glad you like the blog and that my pictures resonated with you! I’m sorry to hear about your surgery—OHS is pretty rough going, psychologically speaking. Protip on the adhesive though: baby oil and a washcloth will take the residue right off. Should you ever be faced with stubborn electrodes again.
As for how it’s shaped who I am—that’s a difficult question, since my illness is embedded so deeply in my life. I’ve had it since birth, so even identifying that my experience is different from most people’s was a huge step. So there’s a sense in which doing a cause and effect thing is facetious; and equally facetious is an attempt to isolate areas of my life and say that my illness hasn’t influenced them.
That said, I can speak easily about what it means to me and the relationship I have with my illness and my illness experiences. I am deeply aware of my own mortality and my limitations, as well as my own capacities. I know my own strength. I understand intimately the tension between necessity and desire—that sometimes you don’t get to chose things, that your will is smaller than the world, and that maintaining identity in those situations is a matter of attitude and perspective rather than action.
I’ve never been able to chose the medical things that have been done to my body; though I consented, in technical terms, to my most recent surgery, it was a “surgery or death” situation. Hardly a meaningful choice. I submitted to it because I wanted to stay alive. And much of my surgery experience was just about staying alive, about making it through by whatever means necessary. But six months later when the dust settled and I felt safe again, I got a tattoo to commemorate the experience. That choice became a proxy for the earlier choice I was unable to make; I chose to integrate my experience into my sense of self and into my body and how to do it.
It really fucks up your sense of bodily safety and autonomy. In many ways that safety is an illusion (you could be hit by a bus tomorrow) but it’s also one of those psychological tricks we humans need to keep going, I think. For me, some of the biggest coping skills I needed to learn were the ability to identify the things that make me feel unsafe or violated, and to consciously enact my bodily autonomy. So, for example: I learned that strangers touching me makes me feel really anxious and dissociated; that exercise, which normally makes me really anxious, feels okay and even good if I do it in an environment over which I have a lot of control; that having the scar on my side touched feels really icky, no matter how light the contact. So I am now really good about setting and paying attention to these kinds of boundaries, and I am awesome at saying no. I enact my bodily autonomy in big visible ways by getting tattooed and by being very particular about how I present in the world. This is why femme is so important to me: it’s about enacting and owning vulnerability. I also do it in more internal ways, by making an effort to pay attention to my body’s cues and cravings. I needed to learn how to build a sense of physical security for myself and set strong boundaries around my body.
To circle back around to your original question: I think the way it’s shaped me, more than anything else, is that it has formed my ability to reach into my own seething mass of anxiety, vulnerability, and fear and let it talk to me.