Realisation: It’s Time to Slow Down
Having an invisible illness may not be so apparent to the naked eye of the observer, but for the person with the illness, they’re more aware of it than they want to be most days. One of the hardest lessons I’ve learned is how to listen to my body.
I struggle with hypermobile EDS and the pain from that can be unbearable at times. However, unless you’re my family or my closest of friends (and even they don’t always know the extent of it) you probably wouldn’t know I have this type of rare, genetic tissue disorder. For me some days are better than others, some pains are more paralysing than others, and some flare-ups are more exhausting than the previous.
Most of my life I have always been the type of person who is go-go-go. I love being alone and having “me time” but I hate to sit still, and I love to feel like I have conquered the world, especially before noon. The problem with having my EDS triggered a couple of years ago, is that, as much as I am that girl at heart, I’ve had to learn that I physically can’t always be like that. And I’ve also had to learn that mentally, I have to be OK with that as well (it’s still a work-in-progress, FYI).
Is it easy? Nope. But it’s something I have been embracing wholeheartedly, and I encourage you to do the same.
Growing up, I was taught that you work hard, from the bottom up, meaning that you had to do things you didn’t like and that you needed to go above and beyond in whatever you did. Don’t get me wrong; having this mentality is absolutely amazing and I still believe this to be true, however, this is the mentality that caused me to be my own worst enemy against my body.
When my EDS/Hypermobility truly flared up for the first time when I was 26 years old, I began to have dislocations and pain I had never experienced before. The problem was that I was a single girl living on her own, working in the fast-paced life of fashion and had to push through it to keep my job and make a living. It came to a point where I had to leave my job because it was too physical to work on fashion shows and style events, for a 9-5 desk job, running a marketing department.
I thought this would be the ideal solution; I could sit at a desk all day and not have to be so physical but turns out I was wrong. That 9-5 job wasn’t those hours at all, more in fact. The stress of running a department, literally sitting all day and not moving, unless I was running to events or lifting heavy boxes of inventory; plus taking care of my body, (which let’s be honest, is a job in itself), ended up taking a toll on me.
Between the physical exhaustion, pain and swelling and mental pain and fatigue, I began to be unable to eat properly, my body really started acting against me and was actually deteriorating. I wasn’t digesting food properly, and I wasn’t absorbing nutrients so I ended up in hospital needing a blood transfusion, along with battling infections and everything else not so fun.
I look back and realise I have no one else to blame but myself. I knew my body was literally screaming at me to stop and slow down, but I didn’t. Partly because I didn’t know how and partly because I was too stubborn and prideful to really do it. The doctors told me that they didn’t know how I was still conscious and functioning. I was basically running on empty fumes and barely had enough red blood cells running through my body to keep me going. I look back now and have no idea how I did it either.
That weekend changed me. That weekend scared me and that weekend opened my eyes. I still live every day in some form of pain, but I have now learned to stop, slow down and to accept that I can’t do everything, and if something can’t get done today, that is OK. I find joy now in sitting on the couch in peace and taking a nap, which I would have never done before. I grew up reading and for most of my adult life I stopped, except for the occasional book here or there. Now I read every day.
When I find that the pain is unbearable I take it as a sign that enough is enough, and I put on a heating pad, curl up in bed and get lost in a good book. I decided last month (which was a hard month pain wise) that I was going to jump on the Game of Thrones bandwagon, so I binged watch all six seasons and trust me, that is something I would NEVER have done before.
I now love taking the time for nice long walks and seeing the beauty of nature with my dog, making tea constantly, getting lost on Pinterest (yes it is an addiction). Talking on the phone for hours with my best friend in New York; writing again (also something I did as a child but had stopped); laying on my yoga mat for an hour and literally doing nothing. I now take the time for me and because of that I can see and feel my body thanking me.
Even though I still have bad days, weeks and even months at times, I can do more meaningful things now than I ever could before. I can also go and do more “normal” things as well that I couldn’t do for a few years, like happy hours, movie dates, shopping days, trips to California, cleaning, sporting events, birthday parties, etc.
The more I don’t push myself, overdo it and slow down, the more I can enjoy things again and be a new and better version of myself than I ever was before I found out I had EDS.Are you at this stage too? Or have you been there & already made the change? Let us know how it went for you!
My name is Jennifer Manly. I’m 28 years old and was diagnosed with EDS in 2015. I do freelance marketing and writing and I have a precious dog named Seven. I love reading, writing, podcasts, movies and fashion and I adore working out and Pilates/Yoga, when my body permits. I’m an independent spirit who has learned that friends and family are the most important thing. I’m obsessed with bettering myself, learning how to deal with life struggles and practicing self-love. Having learned so much, my goal is to now help others, which is why I’m currently working on launching my blog, Serene Seven (coming soon). I admire those who smile through the tears, appreciate the smallest of things and who keep trying, even when it seems impossible. “Owning our story and loving ourselves through that process is the bravest thing we’ll ever do.” ― Brené Brown