Each week, I am publishing a part in a series about ME/CFS. This is Part II, in which I discuss how ME/CFS can affect patient’s lives, and discuss in detail the experiences of severely affected patients. You can find links to the other posts in the series at the bottom of this post.
Last week, I introduced you to the horrifying and complex disease that is ME/CFS. Today I’d like to walk you through how this disease can affect patient’s lives, with some first hand experiences from severely affected sufferers, myself included. This meant delving back into traumatic experiences that still affect me every day. However, I am always grateful when other sufferers share their stories, so it is my turn to do the same.
I am very lucky to have lovely friends who are not only infinitely more gorgeous than me*, but also let me sew for them. As someone who is mainly housebound, I don’t have the opportunity to dress up for special occasions. To be able to sew for people who will get out and about in fancy clothes is incredibly cathartic, as it indulges my whim to sew special garments which I know will get good wear (unlike my formal clothes, which sit unloved in my wardrobe). It is also a helpful mental coping tool, as it forces my mind out of my situation, in which I feel trapped, and into the outside world.
Hi folks! Just a short note to say I had an opinion piece published in my local paper about disability access in Warrnambool. The state of shop access and disabled parking bays in town is abysmal, yet with council elections coming up, no candidate has made disability advocacy a priority. I want that to change.
It has come to my attention that while I write this blog from the perspective of someone suffering from ME/CFS, there may be many reading who are not entirely familiar with the disease. So I decided to write a guide to ME/CFS for the uninitiated, covering everything from symptoms to prognosis, treatment and research. I hope it will contain some information for the seasoned spoonie too.
I can’t pretend to be an expert – this series is based on my 6 years of living with the disease, as well as reading books by authoritative experts in the field and other research (such as patient surveys, ME/CFS organisations, news articles, books and journal articles). It is my experience that patients know far, far more about their illnesses than many medical professionals, solely based on their experience living with the illness 24/7.
Any sewing aficionado not living under a rock will be aware of McCall’s 6696, their famous shirtdress pattern. Gorgeousvariations abound online, and for good reason – it seems to be one of those unicorn patterns that looks good on justaboutanyone. Except me, of course.
Being a lover of dresses and shirt dresses in particular, I’d been wanting to make M6696 for a long time. I even had the perfect vintage doona cover to make it from. Unfortunately (and predictably), as soon as I put sleeves on my muslin, I couldn’t move my arms – the chest was far too tight, all around my shoulders. I’d already busted my ass making adjustments, and after I’d futzed around with the muslin, I concluded that there was no way my hulk back would fit in this pattern. So I turned to my trusty Burda instead.
This winter, I knit a pleasingly large number of accessories. Most were from stash yarn, meaning I spent basically no money and received hours of fun and some fab hats and scarves. What I knit (click through to the Rav project page for more, you can follow along at shibz):
Welcome back. In Part I, I discussed drafting errors, grafts and crotches in indie patterns. In Part II, I finally utilise my psyc degree for completely useless purposes and share sordid stories of brand loyalty. For those with visual difficulties, there is a GIF at the end of the post.
Indie pattern company lovers: I get the hype, I really do. Being a member of several online communities that have an inclination to cult-like behaviour, I have seen and participated in many trends which were little more than clever marketing campaigns. I have seen knitting lovers fight for the right to purchase $100+ skeins of yarn. On buy swap sell groups, brand lovers will line up to purchase a stained $200 dress, or bid each other upwards of $1000 for a jacket that cost $300 retail. I’ve even sold crotch-stained tights to a diehard Gorman lover.* I’VE SEEN SOME SHIT GUYS.**