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.
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It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.
Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.
My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.
What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.
Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷
When you’re hypermobile, the chances of dislocating your fingers, wrists, elbows and shoulders (…and of course, ankles) are significantly high when you’re trying to put on your compression socks! On an average, it takes me about 20 minutes to have them on and I often break out in a sweat because it takes that much effort. They do help with muscle spasms and cramps so it makes me want to keep trying. Oh and if I’m expecting my lunar cycle and cramping like no ones business, I definitely want to use them. I could even do with a compression suit. Also, I had a little bit of a moment last evening when a mayonnaise jar fell off my hand and I wasn’t in a condition to even imagine cleaning up. I had a back brace on and my knees weren’t doing too well either so I needed to call for help. I did think through if I could do it on my own but it made no sense when I had been bedridden all day with pain taking away all my energy. I’ve noticed one thing: we could be doing a pretty good job with acceptance and dealing with limitations on a greater level but there are times when little things remind you that you’re physically not as abled as the rest and then for a brief moment, you’re just like wtf. Well, that’s especially if you’ve had a rough week. Anyway, that was how yesterday ended for me and today is a new day so we shall see how things go. All I want today is my bed, a cup of hot chocolate (SIBO can’t do) and a Great Dane pup.
I’ve had a rough week attempting to function while my arms were simply not functioning. This week, I hope to do more for my arms by doing less in general. I’ve always struggled with slowing down and have come a long way with it… but to slow down further requires effort. It requires being present. I’ve observed that staying more present can change how you experience it and that in itself can be very useful.