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.
Month: June 2016
Hair has grown too long now. It takes forever to shampoo + condition, and, my shoulders, elbows and wrists beg me to stop. That, in itself, other than the fact that your head feels heavy, is a sign that it’s time to go for a haircut.
P.S. – The fatigue, after each long hair wash session, is too much to handle. Like many others who experience pain, I have too considered getting my washed at a parlour. However, the thought of sitting on a reclined chair of some sort and having extra pressure on my lower back and tailbone isn’t exciting enough. Honestly.
“Not only the thirsty seek the water, the water as well seeks the thirsty.” ~ Rumi
Vitamin D + Iron + B12 Test
Ok, I can’t lie. I am tired. Freaking tired. It’s just been two days and I’ve got two weeks ahead. I want to be able to get through these two weeks well, even if there is a high possibility that my days will leave me with no energy for myself. I might need an increased dose of pain-killers too. Maybe I’d need most of my joints taped up too. I’m prepared and I have the support I need.I keep telling myself, one day at a time. One day at a time. One day at a time. There is work and Pilates and Physiotherapy and some not-so-fun paperwork and I’m on a short family vacation at dad’s because my little brother’s here. I can’t predict how the next two weeks would pan out. I can’t tell. I’m not used to such a schedule. I could do with all the spoons on this planet right now.
You’ve come so far,
You can keep going.
Recovering from a zombie state
I feel like a zombie. A zombie who ran a triathlon, won the first position and is now fatigued out of her brain. Wait, do zombies have brains?
Well, here’s the thing. I can’t make sense of how yesterday was – it’s as though I just sat on my bed attempting to read a fiction love-story (I don’t read fiction, by the way), with my new glasses on and the day just went by. I went for Physiotherapy but that’s really it. My brain was numb and heavy and light and cloudy and foggy and misty and messy and everything all the same time. And my body was over-worked, over-drained and over-sensitive. Towards the end of the day, I even started running a slight fever out of nothing but plain tiredness. It was like my body saying, “alright woman now that’s enough.. Stop before I stop you in ways you don’t want to stop.” Except, it didn’t sound as threatening as I’m making it sound.
I’m still recovering from that intense brainfog and still have a residual disoriented sense of the world around me today. Half of me is still floating brainlessly. Thankfully, it was such an easy day at work today – I had the whole studio to myself and I had done what needed to be done so I survived and even managed to take a couple of pictures – you know, when you’re in the right clothes and in an empty studio, it’s okay!
I also managed to get through a short session of my regular Pilates session today. That makes it 4 short sessions this month and that’s freaking brilliant! I’m starting to get back to my routine slowly but I’m so exhausted it’s even funny. I look back and I wonder, ” how on earth did I manage 2 sessions of Pilates per week, and Physiotherapy, and part-time work, and walk to work and cook for myself and work on some parts of my business before my knee got injured?!?”
No idea. I swear I don’t. Did I actually manage all that?!
Our body is constantly changing and we have to adapt to it. To be very honest, I have to give myself a few months and then review to see if I need to make some changes to my lifestyle again. At the moment, I’m trying and I wish to continue trying. That’s all I know.
Most of us physically fragile people are gifted with a brain that’s very strong and we’re capable of dealing with so much more. I see where there can sometimes be a clash between our mind and body but frankly, the lesser the clash, the less we suffer. The more tuned in we are with out needs, the more tuned in others will be with us too.
I’ve got a very busy next three weeks. My brother’s back this Friday for a short summer break and I also wish to get through work and other not-so-fun stuff. Again, I’m not sure if I can and I have to keep checking in with my body.
Do send me some good vibes and extra spoons because I definitely need them right now and possibly for the next month or so. Though there’s still a longggggggggggg way to go (I’m questioning if there even is a destination), I’m very proud of where I’ve come today. It’s not been an easy journey but I’ve made it here. Just like most of us. With that slightly positive thought in mind, I’m going to get into bed and hope I get a good sleep. I think I’ll be ready for tomorrow.
Love,
MD
Despite all the mental strength and perseverance you’ve developed over the years, there will always be those days when you simply can’t function. You making a choice to get out of bed and get through your normal routine makes no difference to the fact that your brain has decided to shut down.
I would have liked to write more. I can’t think though and I might not make sense so I’m going to stop. Maybe tomorrow if I’m able to make sense of today myself. I got to go back to bed now. My phone feels heavier than normal and I can’t stand looking at my screen.
Love to all.
My Tape Story 