Dear readers, please be forewarned that this post is going to be very biological and I’m going to outline what I’ve been going through health-wise, because I feel like recovery isn’t going to begin until I finally just get it all out and start talking about it. If you’re interested in reading poems, and want to observe my 30/30 I’m doing as part of my recovery process, click on this link and sign up (and I’ll be happy to read your 30/30 too, should you be participating!). These will all be drafts, and therefore will not be “previously published” pieces. For those who would like to read about chronic illness and pain, read on.
I have not been a very good communicator. I’ve not communicated well with myself, and I’ve not communicated well with my readers, and I’ve not communicated well with my friends. It’s really difficult to communicate the thoughts and the feelings I’ve been having lately, but I’m going to try.
I’ve spent too much time recently in hospitals. I have fibromyalgia, which essentially means my body is in fight or flight mode constantly. My spine shows marked degeneration in both the lumbar spine and the thoracic spine, which essentially means that it’s hard for me to get into a comfortable position without causing back pain, and also that exercise presents a challenge. I have chronic pelvic spasms (Pelvic Floor Dysfunction or PFD – essentially, you know how when you poop, you’re supposed to relax your muscles? Yeah well mine tighten up and go OH HELL NO we’re not doing that). These have caused me to have a fissure deep in my rectal muscle. These two things combined mean that each and every time I have to have a bowel movement, I wind up in enough pain that I can’t help but scream, my pulse can hit upwards of 160, my body shakes and is drenched in sweat, and I spend between two and seven hours after each and every episode in the bathroom unable to do anything but curl into a ball and sob and beg for the pain to stop. In the hospital, even 16 mg of morphine wasn’t able to cut the pain down past a 5, but at that point, pain at a 5 was a blessing. And narcotics are not appropriate for managing this sort of pain, as they cause constipation, and let me tell you – being constipated on top of it already being like death to try to use the bathroom is NOT fun, and not something I’ll subject myself to. I’m beginning to develop a phobia of eating, because I know that eating makes me have to go to the bathroom, and going to the bathroom makes me want to die. The pelvic floor spasms can get so intense that I lose the ability to urinate as well, which means that I need to go to the ER and get a catheter put in. In short, I really, really resent my body right now. And I need to not resent my body. I need to try to take a look at it with new eyes, and to realize that this will not be forever.
My problems are never going to be fixed. Fibromyalgia doesn’t just go away. PFD can improve with treatment, but my particular case is bad enough that 70% improvement is the absolute best that could be expected – every muscle group that can malfunction is malfunctioning. But they will get better. There will be times that are less painful. There will be times where I feel less weak, less like I’m not going to make it. There will be times where I don’t spend hours a day crying. I know this will happen – and for it to happen, I’m going to need to make some peace with my body. I’ve started acupuncture every week – I’m dubious but hopeful that it will help me find peace.
I have been struggling very hard. I’m not okay with being incompatible with everyday life. I’m not to acceptance yet. I will, eventually, reach acceptance, I am sure, but for the moment, I spend an inordinate amount of time listening to tibetan healing bells on youtube, researching ways I can reduce the amount of pain I am in and not give up hope, and being afraid of burning out my friendships because people can’t take listening to me whine.
So I say everything’s fine. But it’s not. It’s not fine. I’m not fine. I’m suffering. Some days, I’m in the bathtub for 7+ hours, trying to get my muscles to unclench. Every day, I’m taking valium 3x a day to help the muscles relax. I’m taking enough ibuprofen that I know I’m starting to get an ulcer again, but there’s really nothing I can do about it because not taking the ibuprofen isn’t an option. On good pain days, I take a short walk. I used to hike. I used to be out all the time, errands, visiting people, walking, teaching, working. On good pain days, I might be able to take a short walk, or go to the grocery store. Typically, if I make it to the grocery store, my color drains out of my face and I’m sweating, hard, cold, shaking by the end. I collapse when I get home.
One thing I feel I am doing right is that I can still take care of my children – even if I’m helping them with their homework from the bathtub, I’m helping them. I help them be social, I listen to them with all my heart, and I show them the face of someone who is persevering. I love them with an intensity I cannot put into words. We have the best, most loving relationship – they share all their fears and hopes with me, and I am their cheerleader, their counselor, their friend. They’re 12 and 14 – they can help make dinner, help tidy up, help keep things running. Sometimes I feel guilty when I can’t be the mom who says hey, let’s spontaneously go find goats to play with this weekend. Sometimes I feel guilty when we have a Harry Potter-a-thon and curl up on the couch together instead of taking a long hike, like we used to.
Aaron, my husband, is amazing and helps with everything. Tara, my platonic lesbian husband, is also amazing and helps. And every time my family does something to help me that I feel like I should’ve done, I feel guilty. I feel like my worth as a human is diminished because I can’t do the laundry, or go to work and earn money. Because some days, just holding my head up and saying “Today I am going to fucking stay alive and that’s all that I can expect of myself today” is really, really pushing it.
But I’m so, so tired. And I’m so reluctant, so afraid to ask for help. I’ve begun to admit on social media that I’m lonely. It’s true – I’m a very social person. And I feel isolated. I feel like this pain is isolating. I feel like this Judas of a body is isolating me, keeping me in a shell when I want to be working with my hands, helping others. It’s really hard for me to admit on social media that I’m lonely. I try really hard to be the woman that just keeps going, with a smile. I’m an optimist – I truly am, and I can’t change that. But when my optimism wears thin, I feel like people are counting on me to STAY an optimist, and I feel like it lets people down, for me to say hey. Everything sucks and I hate that it sucks and fuck it all.
All of this is the long winded way to say that I’m not doing well, but I am embarking on a writing project to try to help me come to terms with this situation. I’m doing a 30/30 this year, to celebrate National Poetry Month, and I’m going to be writing about my body and my relationship to my body and how my body makes me feel and how I hate it but I want to love it, and how I feel like it lets me down and how I feel like I’ve let it down, and how I wish, I just wish so hard, that we could live in harmony, my body and me. I’m going to be posting these on a blog site specifically made for 30/30 projects, so that they’re private and don’t count as being previously published, and they’ll all be drafts. Final versions won’t be shared until I publish them. If you want to follow along as I wrestle with my body demons, I invite you to. You need to make an account on that site, no spam or anything, and request to view my project.
It’s my hope that by spending some time meditating on my body, thinking about how we work in tandem and against one another, that I’ll be able to find SOME sort of acceptance, and that acceptance will help healing.
Anyway, thanks for reading. I’m going to do another post, in a few days, about some of my goals.