You know you’ve come a long way when you can actually throwback to a beautiful photo from *by far the weakest* (mentally, emotionally, physically and spiritually) time of your life without hurting like before. Thank you for sticking by my side through all these years, @rohant! 💗
Today has been a rough day. There is nothing worse than having a flare up during your monthly cycle. My back and tailbone are experiencing deadly spasms and the cramps this time are worse than last month. Monthly cycles don’t look the same like they did years back. EDS takes your ordinary monthly cycle issues to yet another level. Pain level just shoots up, your joints feel more loose than normal, (I’m excluding all the other common symptoms every woman deals with anyway) and getting out of bed is next to impossible. I’ve forgotten how to function today.
I recently met someone who told me that I don’t look sick at all.
I said, “I know. I’m happy I don’t I guess.”
It never fails to make me wonder what we expect “sick” people to look like. What we define as “broken”. What we think needs “fixing”. Whether “imperfections” are always visible and whether what we see is all that there is.
There was a phase when I wished people looked at me and believed my words. These days I trust that people who need to know will see it for themselves and trust me, while the rest are free to create a story around it. Believe me, you can’t completely hide chronic/rare illnesses.
You don’t have to look sick to be sick or feel sick.
And you don’t have to prove anything to anyone.
All you have to do is attempt to feel and be as healthy as possible, and always be honest with yourself – that’s all that matters.
Lots of love
One of those days when all you can do is sleep with oils and hot packs.
My sleep was terrible last night. In fact, I haven’t been sleeping too well and I assume it’s because I’m still getting used to my new place. I usually need some extra time to settle in and get used to a new space. We all do I suppose.
It took me a while to fall asleep last night and I got up far too early. 5:20am? I woke up feeling extremely cold; to a point that I was shivering and needed to wear a sweatshirt, put on my socks, switch off the AC and get myself two hot packs to hold on to. Getting out of bed was a challenge because I hadn’t slept enough and my back as tight and in pain. Nope, I didn’t get a dream and nor did I wake up feeling anything. I just woke up feeling abnormally cold.
No, I wasn’t running a fever either. I checked. My temperature was kind on the lower side instead. I don’t usually get up because it’s too cold in my room. I’d get up if it gets too hot sometimes. The AC needs servicing, so you can imagine, it really wasn’t that cold to begin with. I decided to push myself out of bed, even if I was freezing to death, and start with my day. I had to because my brain was active (tired, but active) and my body didn’t want to cooperate. I know it needed rest but staying in bed wasn’t helping.
Within an hour or so, I got back in bed again. There was no way I could’ve continued with the day. There is no way I’m going to be able to sit with my laptop or get anything done, even though my brain could handle it. It doesn’t even seem like a work-from-bed day. Today, my body needs extra care and rest and that’s what it has to get.
That’s just how it is – every day looks different, yet can feel the same.