A Little About Yesterday And Today

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.

*’Spoon Theory’ by Christine Miserandino (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).  A lot of people have been using her theory to explain what it may feel like for us. I would refer to it as a count of energy of some sort. It’s great how she’s explained it though. 

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