Going to continue shoulder and lower body strengthening from today. My physiotherapist will be assisting me through my exercises and then doing some trigger point release for me. The best part of it is that we’ll be doing all the exercises in the comfort of my own space. That way, I can skip the traveling and the dreadful exhaustion that comes with it. The bumpy roads here don’t help. I can feel my joints rattling on the insides of my body. Not fun.
I’ll be starting out real slow but that’s okay because starting somewhere is better than not starting at all.
It’s been ages since I could stick to a regular routine of pilates. My body has very obviously deconditioned over the last year and half, especially since the onset of SIBO (March 2016) and the back inflation episode (Jan 2017) that got me bedridden for more than 6 months. It only continued to decondition further over the last 8 months as my focus turned to getting through the move.
That said, this move and transition would have been way more stressful had this been a few years back.
At the moment, my shoulder still needs to be supported with a sling. Over the weekend, I tried relying less on the sling and more on my own muscles but that didn’t go too well.
This week, I’m going to turn my focus to slowing down consciously; to bringing my attention to the present and going one hour at a time if necessary. My safe place is safe. I am safe. I can breathe now.
Happy Monday, all! ❤️
#physiotherapy #pilates #strengthening #shoulder #sublaxations #dislocations #ehlersdanlos #chronicillness #ehlersdanlossyndrome #rare #illness #strength
Update: Two days later, left shoulder is still pretty off position. Pain wise, I’m at about 7/10. There is a fair amount of tightness along my neck and around the shoulder blade which is rather normal. When a joint goes out of position, the muscles around that joint tend to work even harder, tightening, to hold the joint in place. The effect of which is basically over-compensation of the entire body, leaving you feeling more fatigued. The tightness in the muscles around the joint tends to cause more pain than the actual, baseline pain due to sublaxation.
Take a look at my photos and try comparing it with the photo of anterior dislocation. You should be able to see some dents, areas darker than the rest. If you take a closer look at the first photo, which is actually taken two days after my shoulder sublaxed, you’ll be able to see that my humorous is slightly off the glenoid.
In a couple of days from now, I hope to go back to strengthening of the shoulder. You have to give it enough rest before starting the strengthening work, however, the longer you take to start the strengthening process, the longer the shoulder takes to recover. I usually rest it out long enough – i wait till my body gives me a green light or till I have enough confidence to start the strengthening process.
Unfortunately, the strengthening process in itself causes more pain, more tightness and someone a bit of muscle spasms. I end up needing more rest and more trigger point release once I begin the strengthening process. Keep in mind that everyone’s body is different and how it responds is vastly differently too.
Go at your own pace. Know when to listen to your body and when yo listen to your physiotherapist.
So I’m sitting in my living room listening to mantras, my palo santo burning near my bookshelf, and i suddenly realize how quiet my entire apartment is. Everything is quiet. I’m in a noisy country but at this very point in time it’s all so quiet around me. I love this. I crave for this so much. This quietness is something I want and need to live this life to my very best.
There’s been far too much movement in my life lately (or should I say, all my life) that these moments of stillness is what brings me a sense of stability and peace. It allows me to connect with myself, which has been a little hard lately considering how terribly off track I am in terms of my daily routine and rituals that help me stay sane and manage my health. I can’t possibly stress enough how much a routine and some personal rituals have helped me to get here.
As the unpacking ends and the actual settling in begins, it looks like I can finally let go a little, slow down and focus a lot more on my health.
For the last eight months or so, my health took a backseat as I simply had to get through this move. I’ve been feeling sort of out of my element, you know, kind of scattered and all I know is that it’s not where I like to be. Despite dealing with a lot more health issues throughout 2017, I’ve had to push myself and make things happen. My thought was, the quicker I got things done, the quicker I got to rest. And now that my sanctuary has come alive to quite some extent, it’s time to prioritise health and self-care and work towards my next goal. More on that later.
Okay, I’m going to keep my phone away now and get back to sitting still. To listening to my heart beat. To watching those crazy thoughts come and go. To noticing pain.
To being thankful for being here.
#sanctuary #quiet #evenings #peace #calm #love #home #mantra #meditation #chronicillness #pain #suffering #eds #ehlersdanlos #ehlersdanlossyndrome #illness #routine #rituals #onestepatatime #gratitude #thankyou #health #mind #body
Today is a big day for us spoonies.
It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.
While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.
Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.
Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.
I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.
Keep going one day at a time!
Friends and family,
If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.
#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community
Is it possible to just have enough energy to post photos and not write much?
Yes. Welcome to EDS.
Wake up tomorrow, look around, say a word of thank you for the things you have. Take a deep breath, close your eyes and say thank you for people who are still in your life; for those who have showed up for you. Walk to your mirror and say thank you to the person you see. Make a promise to yourself that you won’t settle for any less than what you need. It doesn’t matter who says what. It doesn’t matter who “settles down” at what age, or achieves what when you know you’ve chosen a different path, one that is least followed, understood and accepted. Look inwards, for you know what is best for you. Look inwards, for you’re filled with love you’ve tired to find outside. Look inwards, for you’ve once given away too much love that you now owe to yourself. Look inwards first, always.
#inwards #settle #society #selflove #selfcare #love #path #home #friends #family #thankyou #gratitude #valentinesday #celebratelove