Two weeks ago, my doctor gave me a fibromyalgia diagnosis. I suspected I had it when I went to see her; she ran tests to rule other causes out before confirming I have fibro. On one hand, it’s nice to have a diagnosis, so I can try to get accommodations from my school. On the other, fibro is a lifelong thing, one where my treatment options are often likely to be about pain management. To reduce my low energy, high pain days, I have to eat well, sleep enough, and exercise often.
Above all, I have to find a way to minimise stress, which is not always my strong suit. I tend to commit to a lot of important, fulfilling things, juggle them all with increasing difficulty until I just can’t keep up, and I need to let one or two or three drop away. But I’ve been going through a lot the last few months, and it’s definitely made me slow down and listen to my body a lot. I have been forced to say no to things I want to do, and I’ve been forced to ask for help when I can’t manage everything I’ve got.
I am used to being pretty independent, to handling my own needs. Even when I tell other people I’m struggling, I often insist that I’ll figure something out; there’s no opening for help to be given or, in some cases, even offered. I’ve been increasingly frustrated at my lack of mobility and energy, because I don’t like asking for help. I don’t like having to rely on others, and I often feel guilty for inconveniencing friends. I apologise constantly, even for things that my friends have offered freely. I am grateful for their support, of course I am, but I also feel that I shouldn’t need it.
Recently, my mother texted me about a Facebook post I made. Her text said I should ask her for money when I need it; she might not always have it, but she likes to be asked. My automatic reply was “okay.” I didn’t know what else to say. But after reflecting on it, I also replied that I likely still wouldn’t ask her. Part of why I push so hard is that I want to get experience and find a job paying well enough that I can buy a house and move my mother in.
In my story for the Intersections event, I mentioned that my biggest life goal, my dream, is to make enough money that my mother can retire. Most folks are retired by 70. I have another 19 years to make it happen, but my recent low mobility has raised some scary possibilities. I’m afraid that I’ll never get there, that my mother will still be working 3 jobs and caring for my brother in her 70s. I’m afraid that something terrible will happen to her before I am established enough to take care of her. I’m afraid something will happen to me, and I’ll add to her burdens instead of lifting them.
How can I take care of my mother when I can’t even take care of myself?
Since my symptoms started back in October, I’ve started a slow return to stable health. I’m not as able and mobile as I was before the flare, but I’m considerably better than I was in the worst of it. I haven’t slept through class in weeks, and I can walk almost as much as I used to, though I still need a cane. The meds my doctor prescribed keep me from having too much pain during the course of the day, and I haven’t had incapacitating brain fog for almost a month. I still struggle to remember words on a regular basis, and I have to process out loud a lot now, but I also know it could be worse.
Still, I’m haunted by the possibility of going back to that place. I have been able to get accommodations from my school, and both my professors and my supervisor at work have been very understanding and supportive, but I’m used to being able to do more. That’s a manifestation of societal pressure: our society is capitalistic, and emphasises production as the measure for self-worth. (I wrote a couple of poems about that—one is here.) I know this, but I still struggle in allowing myself the space and time I would give anyone else.
I encourage my friends to care for themselves, to take things slow, to tell me and others what they need, and so on, but when it comes to myself, I am impatient. It is a good thing when my friends self-care, but I have too much to do. I even put off my own self-care by caring for my friends!
The tattoo on my upper chest says “Radical Self Begins with Radical Self-Love”. It’s meant to be a reminder to take care of myself: I can’t do all of the cool, amazing, important things I want to do if I don’t take care of myself. I am definitely radical, but I’m also running myself into the ground, and I need to take time and space to love and care for myself, before I totally burn out.
I think it’s time to make a self care plan, and schedule some time to just do things that will help me unwind. After all, I’m not superhuman, even if I try to act like it sometimes.
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