This is a little bit of a different entry for me, but I have been having a lot of thoughts about these three things and how they fit into my life. I thought I would write about them.
I’ve spoken before about how body positivity and sewing go together. Sewing helps me become a more body positive person and helps ,e break free of the number on the tag and fit for an actual body. I’m able to look beyond my fat to enjoy my style and become the confident person I should be.
Chronic pain runs counter to all of that. It’s a struggle and it’s your body attempting to rebel. You have very little control over your body and it prevents you from doing so many things. Chronic pain makes you feel horrible both inside and outside. On my bad days, I struggle to get ready for work; I struggle to smile; I struggle to do the basic things in life that are so easy for people without chronic pain.
I’m going to talk about what my medical condition is and how body positivity and sewing can help me recover.
There are a few different sources for what it feels like to live with chronic pain or illness. One of the best explanations is the spoon theory. I use this in conversations with my fiance all the time. The basic gist of it is that someone with chronic illness starts their day with a limited number of spoons. In her example, she uses 12 spoons. Each spoon is an activity: get out of bed/spoon, go to the bathroom/spoon, brush your teeth/spoon, get dressed/spoon, etc. If you run out of spoons, they are gone. You have no more energy. Sometimes you can borrow from tomorrow’s spoons, but that leaves you in a spoon deficit, which means you can’t do as much the next day or worse you end up harming yourself more and losing all your spoons for the rest of the week. Happens to me so often.
Chronic pain is exhausting. It takes a lot out of you. It leaves you unable to sleep and regain your energy. Or, if you do sleep, you wake up a lot or toss and turn or wake up in tons of pain. The pain makes it difficult to move normally. Your basic movements become very laboured. It’s sort of like moving through lava, if someone could survive that. You’re on fire and in pain, but the lava is thick and tough to move through; you aren’t dying, but you feel like you are. I drop things. I get frustrated. My hands don’t work properly. And everything is swollen and inflamed. I’ve gotten into this habit of removing my engagement ring and putting it back on to see how swollen I am. On good days, it slides right off without issue; on bad, I can barely remove it. Today, as I type this, I can barely remove it.
Chronic pain is your body rebelling. It is your body attacking itself. I don’t look sick, but I am suffering with every movement. On bad days, I don’t sew. On good days, I sew and I make jokes and I smile and I hop about. But even on good days, I am in pain; just less pain. It’s like the lava has ebbs and flows. Bad days, I am up to my ears in lava; good days, the lava is around my knees.
I recently read this article about understanding chronic pain from the perspective of a sufferer. I shared it on facebook and spoke about it for the first time there. I’ve spoken to a few people individually and mentioned a bit on here, but I guess I “came out” as a chronic pain sufferer yesterday. I’ve gone through a lot in my life, but this is definitely the hardest. The article really lays out how I feel, except for the last part about religion. I am not a religious person. I keep pushing forward, because I am incredibly determined and, in spite of everything that has happened to me, I am a very positive person and see hope in every corner of life. I am survivor and that keeps me going.
Onset and Diagnosis
Three years ago, I started having the worst years of my life. I was in top physical condition. I was well on my way to losing a bunch of weight and was the smallest I’ve been in my adult life. I was exercising almost everyday and walking 10km or more per day: during lunch break, walking home from work (this was an hour long walk), and walking at night with my fiance on occasion. I was eating incredibly well. I still eat incredibly well. I am a “no processed foods” kind of person and, while I do get them occasionally, I tend to steer clear of pre-packaged foods and make a lot of my own things, including breads.
All signs pointed to me being in great shape and then I started to decline. It started with an increase in migraines; I’ve had migraines since my early 20s, but I started getting them on a weekly or even daily basis. I started feeling dizzy on my walks home and I had to take breaks. I then stopped walking home. My right hip started hurting. My left knee had sustained an injury a few years before and I had flare-ups with knee pain. I slowly couldn’t exercise, because it was so painful. I started getting shooting pain from my right wrist to my neck and eventually my elbows were in constant pain. Over the space of a year and a half, I went from working out all the time to not being able to do much at all. I saw doctors; I got an MRI; I got xrays; I got massages; I went to a chiropractor; I went to a naturopath; I tried healing waters; I eliminated more things from my diet: soy, inflammatory fruits and veggies, red meat, etc. etc. I started seeing a physiotherapist this year at the end of January. It’s been helping to a degree, but again it’s like moving through lava and the change is so slow.
And, yes, I gained weight. Twice as much as I lost. I just got weighed on Tuesday and had a meltdown about it. They are just numbers, I tell myself, but numbers that reflect how much pain I carry. I never cared about being skinny, but I always wanted to be able to move, to dance, and to play. Not be the person who goes to bed at 7pm out of pure exhaustion with tears in my eyes because of the pain.
I was diagnosed in the fall with fibromyalgia. I’m still not convinced that this is entirely what is wrong with me, but at least it is something. I was also told by physiotherapists that my joints are hypermobile or too flexible. I am bendy. This unfortunately leads to an increase in injury and pushing your joints out of place with simple tasks. Sometimes when I twist my abdomen, I get a pain in my rib and feel like it is going out of place. I wake up at night and feel like my hip joint is out of place as well. If I carry too much weight in my hands, my elbows can feel like like are going out of joint. I’m working on figuring this out with a new doctor who is finally willing to help me get better.
We’ve come a long way, baby. I started my body positive journey back in 2008 when I joined a burlesque troupe in St. John’s, Newfoundland, where I was doing my PhD (have since quit that due to a lot of unfortunate circumstances regarding supervisor neglect).
Burlesque is a great gateway drug to body positivity. You get to dress up in gorgeous clothes and “tease” the audience into submission. They scream for you to take off even the slightest bit. I never went beyond showing my corset, but did they ever beg for the gloves to come off! Stage performance is amazing. You can be anything on stage. I get the same euphoric feelings from my improv comedy performances. In 2009, I fell down some stairs and then moved to Toronto to be with my fiance. The fall was a few months of recovery with very little help from healthcare professionals. In spite of that setback, I still maintained a body positive outlook.
Here are some basics of the body positive movement: your body is just fine and you should love it. Does that mean you can attempt to lose weight or that you shouldn’t be on a diet to be body positive? Naw. It just means accepting yourself. If that acceptance means going to the gym, do it. If it doesn’t, whatever. Love yourself. Kiss your mirror in the morning and tell yourself how wonderful and adorable you are. You only have one body in this lifetime and you have to treat it right. It also means ignoring the expectations that society sets for you. You are the only person that you should have an opinion on your body.
For me, that means embracing my style at any size. I wear dresses, because growing up fat I wasn’t able to. I was scared to show my legs. I was scared to wear anything that showed my curves. For me, body positivity meant I was free to stop thinking of what went in my mouth, what number the scale said, and free to live my life.
I’ve got through various eating disorders. I’ve overeaten, undereaten, starved myself, and, yes, I’ve purged a lot. Being body positive, helped me repair the tense relationship I had with food and listen to what I enjoyed, what my body was able to eat, and to not feel guilty for enjoying a bag of chips or a chocolate bar on occasion.
Body Positivity and Chronic Pain
This part has taken me a while to come to terms with and I’m not even really there. It’s tough to be positive about a body that rebels at every step. When you are walking through lava, it’s tough to take a moment and kiss the mirror and tell yourself how wonderful you are.
If you follow me on instagram, I have a lot of body positive talk about myself. I tell people I am adorable and I truly believe it. But you won’t see a picture on a bad day that reflects that, because chronic pain sucks the positivity from you. I am trying to change that.
What I started doing recently is taking self care days. I am having one tonight. As much as I would love to get back to my wedding dress and finish it, I realize when my spoons are running low and the lava is at my ears, I need a self care day.
Self care is body positive. It says that I am worth it. It says that my body deserves a hug.
What do I do on self-care days:
1) Limit activity: I may be working my day job, but I tend not to run errands except very small ones that don’t involve carrying a lot.
2) Indulge in something: This could mean getting a Frap from Starbucks or buying a favourite chocolate bar or making something tasty and easy for dinner that I don’t usually have. Something small that is outside my usual routine.
3) Watch something fun: I watch something like Gilmore Girls or I will watch Pitch Perfect or Mean Girls for the 400th time. I indulge in visual pleasures and especially in things that make me laugh. Laughter is the best medicine.
4) Take a bath in epsom salts and bubbles: Pretty self explanatory. Epsom salts are great for inflammation.
5) It rubs the lotion on its skin: After the bath, spend some time applying lotion and massaging my tender points. I use an all-natural ointment for muscle tenderness.
6) Hot hot heat: I have a castor oil pack and hot water bottle treatment that I find helps. I put it on my abdomen for 15min and then my feet for 15min. Mostly the castor oil just leaves the skin nice and soft and the heat helps ease the pain.
7) Meditation: I meditate and toss my phone across the room while I have the hot water bottle on me.
8) Streeeeeetch: I stretch each area of my body. Nothing too strenuous, but enough to work the muscles and take advantage of the heat.
9) Realize my limitations and accept them: I take some time to reconcile my feelings about the pain and my hatred over my body’s limitations. I try to accept that I cannot snap my fingers and be better overnight, but that it is a gradual process and I will eventually get there as long as I have hope to move forward.
Sewing and Chronic Pain
“How do these even go together?”, you ask. Sewing is one of those activities that can be a lot easier on the body. You are basically seated the entire time and you don’t need a huge range of movement. On bad days, I can’t put pins into the fabric so I stay away or I do small things. I’ve actually started doing several projects at once so I can switch between them and choose what I can and can’t do. I choose a good day and cut out a ton of patterns at once and then I just get to sew.
It’s important with any chronic illness to feel productive and sewing does that for me. I am able to work through it and create something beautiful and increase the outward beauty I have.
The single worst thing to do if you have a chronic illness is to stop everything. Don’t stop. Don’t sit on the couch. Don’t immediately quit your job. Don’t fall into the pit of despair. Don’t drown in the lava. Keep going. Do what you can with the spoons you are given. Create something. Some days, I just sketch something or I write something or I will tell myself a story.
There is lots of stuff out there about the benefits of creativity and mental illness. While there aren’t as many articles on creativity and chronic illness, the benefits are there. Creativity helps recovery.
The ability to create something even the smallest thing is a way of pushing through the lava. I can make it to higher ground and feel better. Improv helps, but that is very physically exhausting and leaves me feeling pretty horrible the day after. Sewing, on the other hand, is within my spoon limit. I can take as little as 20 minutes and work on sewing a seam and then eventually have a dress to wear and feel good about. Not only that, but it’s a dress that, when I wear it, I want to kiss the mirror and say wonderful things about myself.
Not only that, but I get to write about it and I get to take part in a wonderful community of sewing bloggers. You all help on a daily basis.
Sewing may not be the answer to healing my body, but it helps with all the mental fallout of walking through lava on a daily basis. It helps lift me out of a sad mood and work toward loving myself again.
Thanks for reading. ❤