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A mandatory selfie to capture the memory of being out in 9 degrees (felt like 6?), under the sun, on my own, at 7:30am, in my gym pants, with a strange sense of comfort, no sensory overload, and of finally… FINALLY being in my own body, focused on every step because nothing else around me requires too much of my attention.

I walked around 1.2km, got us coffee, sat on a bench in peace, listening to the birds and felt a sense of calm in my heart. It was the feeling you get when you feel at home, a sense of safety and comfort, even though a place is new. And then my eyes filled up at the thought of how much I missed this.

A sense of quiet and stillness makes me feel at home… and lately it’s been far from that.

Thankful to be here today despite all the not so nice things in life.

Medicine inventory

These are just my daily medications and supplements. These are things that keep me functioning; help me get out of bed, to say the least.

Then there’s another bunch of medications which are basically for emergency + other symptoms management medicines and I carry them in a pouch all the time.

Every couple of months and especially before I go on a holiday, I go through the inventory, calculate, order and make sure I don’t go days without a certain tablet. EDS is a multisystemic disorder which means there is more than just the joints to take care of and there are also more medicines.

Sometimes, because of a brainfog or something, I miscalculate or under plan and end up with really harsh consequences which are basically like withdrawal symptoms. It’s like my body goes into a shock and reacts with palpitations, low blood pressure, nausea, extra fatigue and what not— just not worth it.

I admit, dealing with EDS often feels like a full-time job or like looking after a very sickly child. It requires you to tend to it with a lot of courage and love, every single day. The more pain you experience, the more love you need to find within yourself. It’s a lot of conscious work, finding that love and befriending your body despite all the reasons you have to hate it.

Stocking up my little pharmacy and handling my prescriptions used to get quite stressful at one point. Today, however, it has become a practice; a part and parcel of life. The thing about EDS is that it is as predictable as it is unpredictable and there’s only so much one can do. All the ifs and buts need to be taken into consideration because quite honestly, you never know what comes next.

Over the years, as I slowly came to terms with the complex nature of this illness and its implications on my lifestyle, I’ve also become more patient in responding to its complexity. If I need to depend on certain medications and supplements to live at my best, then I need to embrace the situation for what it is.

💗