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,
When you’re experiencing a severe brain-fog and your Physiotherapist sticks a memo on the back of your phone to remind you to do things because you can’t remember anything for nuts.
Yesterday’s brain-fog was by far one of the most disorienting brain-fogs I’ve had this year. Maybe the haze is taking it a new level altogether. I lost clarity of things around me, I couldn’t think, my eyes were tired, I couldn’t type properly, I was walking like I might fall any minute, I was talking with words all jumbled up, and, I couldn’t remember what I did during Pilates the day before.
My Physiotherapist asked me if the things I might forget while I experience a brain-fog come back to me when the fog clears up. Yes, at least for me, I start to remember everything as the fog clears up. Sometimes this may take a few hours and sometimes, a few days. Things start to get clearer slowly but the exhaustion from the braindead-ness takes quite long to settle.
I’m feeling a little bit better today – less clouding of thoughts for sure and my eyes are able to focus better. Now, before I lose track of everything again, it’s time to stop looking at the phone screen.
This pain is surely tiring me out and I’ve decided that I’ll monitor it for a few days more before seeing the Specialist. He will probably repeat what I’ve heard so many times before (that I need to pace myself, I need to slow down in life, I need to work on changing my lifestyle, that there is no solution to this at the moment, no cure no fix, that I need to learn to manage the pain, I have to find that right balance between resting and being active, that I need to break the pain cycle, I need to strengthen my back even more, keep building on my core, continue doing physiotherapy, make sure I get enough sleep, keep taking my medicines and slowly work on reducing them etc. etc. etc.) and that’s fine, or he’ll send me for another MRI to see if the bulge in my disc has gotten worse. Either ways, it’s not a bad idea to have it checked now that it’s been almost two weeks since the day it got injured.
I think I can tolerate the pain as long as it doesn’t start to give me a brain fog (it’s a common symptom for those with HMS/EDS) – which is starting to happen now. If I were to explain what that feels like I’d say that things around you start to slow down somewhat. It’s as if your environment goes on slow motion mode. Everything around becomes draggy. Imagine a fog inside of your brain. You lose clarity, there’s a lot of confusion. Your eyes almost hurt. Sometimes you develop a bad headache (I’m getting one right now). You basically get overstimulated from the pain and get sensitive and numb to everything around you at the same time. How does that happen? Well, your brain hurts from the heat around you and it makes you almost numb to everything else. It’s as if your brain puts a ‘no entry’ sign to any kind of new information because it has reached its maximum capacity in every way possible. There are different reasons one develops a brain fog but for me personally, I either start to feel it when my physical pain has reached a particular limit or I am actually mentally overstimulated and have things to sort out.
The heat isn’t helping either and my brain feels fried from it. I spent the day in my room, with blinds down and drank a lot of coconut water. It doesn’t seem like a day for warm herbal teas at all. I applied a strong Ayurvedic balm on my forehead and took my usual nap, only to wake up feeling the same. A combination of back pain + brain fog + migraine is a complete killer. I used two use packs for my head, one under my neck and one right at the crown of my head. I’ve seen that it helps to soothe most headaches, especially migraine. I’m already taking enough pain medication so I’d like to avoid extra pills for now, and, I also realized that I’ve run out of the stronger migraine pills that were prescribed to me some two years back. I haven’t needed the stronger ones lately, so that’s a good thing anyway.
I’m going to try a cold compress later tonight (with essential oils that help with migraine) though I’ve got to see how my brain fog is comes along and if I think I can. At the moment, I feel numb to everything around me and I have no idea how I’m even typing all of this out. Okay, staring at screens surely makes things worse so I didn’t read on my iPad, neither did I work on my laptop and now it’s time I stop typing this out on my relatively tiny phone. I just took a small bite of dark chocolate (caffeine either works for you or doesn’t work for you when you’re having a headache – and for me, dark chocolates does work sometimes. But I like dark chocolate anyway, whether it helps or not) and I’m going to close my eyes for a bit again.
I had a crazy day yesterday. Fun day but a crazy tiring day.
2 friends. 2 Birthday dinners. 2 different places.
Knowing my body well, I had made plans of meeting both of them separately. As a matter of fact, I can only manage meeting one person or one group of people in a day if I must. I know this. But like I am learning these days, a lot of things are completely beyond my control. So interestingly enough, and as expected (I kind of had a hunch), both the plans just happened to clash. Mainly because I suddenly had to go for a Doctors appointment.
So a super long story cut short, I was stuffed. I had a lot of nachos at both the dinners :) I’ve never had 2 dinners back to back ever in my life. Serious. So this was a bit insane. Yummy nonetheless.
My brother and I snapchat quite a bit.Before I left home for Pilates around 4:30pm, I was packing up as if I was going for some sort of an adventure. Actually, I felt like Little Red Riding Hood; except there was no mean wolf or an ill grandma involved. And I didn’t wear a Hood. I was prepared to be home rather late, sleep late and get up early as usual. Not something I quite like to happen to my routine…but come on, most of the days I make sure that no one steals my *spoons. Some days, I’m willing to give a few away. Like yesterday, for these two friends. Because it was their Birthday!
Giving away spoons or using up spoons can sometimes be conscious choice, though most of the times, it’s not. We try out best to save our spoons but they’re either just taken away from us or they sort of keep falling off our hands as we get through the day. It requires a heck lot of preparation on my end on the days I make a conscious choice to give away a couple of my spoons. I generally have to take extra pain medications, rest more before that, mentally prepare myself for the exhaustion that might come along with it etc etc. A lot of times, even this extra preparation fails and I have to cancel plans. Which is not something I like to do. I never did.
I am glad that I managed to wish both of them on their Birthday. It did take a toll on me but on some days, I’m okay with it. It’s always nice to be around friends on their Birthdays! Oh, we got some really nice photos too! One of my friend’s cut a fish (we had ordered fish & chips) as her ‘cake’ and the other one cut a rainbow cake. In fact, it was my first time trying a rainbow cake. It reminded me some lemon zest cream biscuits from childhood!
I got home last night around 11:30pm, feeling like a complete zombie, guarding my joints as far as I could and feeling like I’d fall apart any moment. I was in pain beyond anything. But I was prepared. It didn’t piss me off like it used to before I learned to be okay with my body. I have to be patient with myself. It didn’t hurt me. I didn’t want to cry about my body being in pain. I knew that it was a choice I made for a couple of my friends; a childhood bestie and a Design schoolmate.
Unlike before, I knew how to attend to this pain a bit better. I changed out, took a warm shower and jumped into bed. I oiled up all my joints and finally gave my back some rest. Sometimes I think I’d die without my bed. I wish I could carry my Orthopedic mattress around, just lay it open where ever I wish and rest. Anyway. I was home finally; some seven hours later. Seven hours that felt like eternity.
I couldn’t sleep till 3am. Three AM… Of course, I was physically just gone. I had no energy left. But being physically gone not equal being able to sleep right away or sleep well. For most of us with HMS, extreme pain comes along with extreme fatigue, which sometimes means extreme sleeplessness. Also, I’m noticing these days that it gets a little difficult for me to fall asleep if I meet too many people in a day. I feel so low on energy . Sometimes I feel so drained out that I wonder why I even went out. It’s not something most people would be able to relate with. I was up again at 7am, feeling brain-dead and totally out of spoons. It really really really (times three) took a lot out of me to get out of bed today.
If this were me 5 years back, I could’ve met 3 groups of people at 3 different places, travelled around in public transport, and still had the energy to be home at 11:30pm, shower and get back to work if I needed to. But that’s not the case anymore. Well, not that I used to do too much of that back then.. but we get the point.
Things are changing. I am changing.
Today too, was a long long day. It was just a check-up and update sort of an appointment. I had a really low blood pressure when I reached the clinic. My heart rate was on the lower side too. The nurse looked at me (I was wearing my gym gear) and asked me if I was an athlete. I smiled and said , “Nope, no where close to one!” By the time I was done with the doctor, I was starting to develop this sick ‘space’ in my head. Brain fogs usually start this way for me. This airy, space-y gap starts to develop in my brain, between my thoughts. It’s not a good space at all. It feels like your brain has gone on vacation and left a note saying ” Sorry. OUT OF OFFICE.” You’d think that must feel good. But it doesn’t. It’s not a happy space where your brain is enjoying a “break”. It’s more like you brain has had enough and wants to be left alone. Things around me start to slow down. Everything goes on a slow-mo setting.
A friend of mine was kind enough to accompany me to the Doctor today. And today specifically, I’m so happy someone was around. I don’t usually fall asleep in cabs… Today though, I couldn’t keep my eyes open. I was zoning out a little bit and the only thing keeping me up were the jerks and humps on the road. I think I’ve had worse brain fog days for sure. Today isn’t as bad, but the fatigue from yesterday together with today’s doctor’s appointment probably got a bit too much to handle.
I was in bed for almost an hour and a half before being able to get up and walk around. I really wanted to be around water, the beach or something… But I was far too tired to get there. So I went to sit by the pool instead. I even took a small walk around my apartment, had a warm shower, got changed and decided to type this out.
I don’t think I’m going to be able to meet anyone in the next few weeks. I just don’t have the capacity. I feel like my battery has run out and it’s going to take a while to recharge. This means I’ve got to be honest with people around me and also be honest with myself about what my body can manage.
That’s all for today. I need to get into bed earlier than normal tonight and get a good rest. I want to sleep like a baby.
Goodnight all.
❤︎
P.S. I do not know what’s up with the alignment. I don’t like how it looks so I’m going to imagine that it looks fine.
My Tape Story 