Some days I am woefully lacking in every area. Today is brutal. That’s the only description I can give.
On days like this every area of my Hemicrania is switched on. This happens even less post op, even when the implant isn’t working correctly. But alas today the stars have aligned to light everything on fire. My head, my face, my eyes, my jaw and my ear, my neck – it’s all alight.
I have nothing available. I’m empty. And every little noise or movement is triggering. I went down early morning for mine and Bellas medication/breakfast routine and I have only just left bed again (2.30pm). In fact I haven’t even switched position and were it not for my complaining bladder I doubt I’d have moved for some time more.
But as I am up I decided I better get some toast. So, ear plugs in, sunglasses on, I’ve crept through the house, down the stairs on my bum (because it’s one of those days where the rest of my body isn’t cooperating either). I’ve crept like a burglar in the night, through my own home, because I cannot stand the noise or the movement. I’ve opened the cupboards with a level of stealth I should be particularly proud of.
I’ve made my toast and layered it with Nutella because I’m an adult and we can make these choices without permission now. I topped up my water bottle and off back to bed I’ve crawled.
I know I have used energy I didn’t already have. The simple act of getting up in the first place brought on full body shakes, sweating and a little wobbly. I am already feeling the consequences of simply providing myself with the bare minimum. I’ve not made a wholesome lunch full of goodness, I certainly don’t have it in me to do that. No I’ve provided myself with a lunch somewhere between a 5 year olds dreams and a students budget. Even the act of eating hurt with my face and jaw being how they are today.
I will not rise again until I have dinner. I hope, of course, that mum is up to taking this task off me today. If not I have Mac & cheese in the freezer or chicken ready for the airfryer to whack in a wrap. That is the extent of what I can put into looking after myself most days. It’s very rare that I can construct a meal from scratch, I live for 20 minutes recipes. I often crave fresh greens and I’d say I eat fajitas for 80% of my dinners because it ticks the low energy, fresh food options. I never bore of fajitas because there are too many options available – which is just as well.
I need to have a bath. But I certainly don’t have it in me for that. The truth is that I’ve been feeling particularly bad since Thursday, when I last left the house or had a bath. You read that right, that’s my reality. I don’t have a shower so a bath is my only option. But it takes a certain amount of energy that I’m just not in possession of. I’d love to have a shower because I’ve always been a bath daily girl and I hate not being able to wash daily. Plus – I fucking LOVE a bath. Han will tell you – the hours I used to spend in the bath were crazy. I’d make a whole evening out of it. I’d have candles, I’d regularly top it up with hot water, a beer on the side and a book at the ready. I’ve even eaten pizza in a bath. But my baths now last as long as it takes me to wash – I rarely get the luxury of being able to lie back and enjoy my time relaxing.
But alas today is not the day to improve on my personal hygiene. That’s the cold harsh reality of where I’m at. It’s awful, and I often feel ashamed to admit these things. But they aren’t my fault, it’s not within my control to boost my energy – no matter how much Nutella on toast I eat.
Today the most I will manage is providing my dog with her dinner and her meds. I will of course take my own too. Days like these I wish I didn’t train myself out of sleeping so much. When this all kicked off I would sleep for 20 hours a day. My body didn’t have the energy to stay conscious through these levels of pain, but I decided to work hard to stop that habit. Days like today I silently curse myself for that because it really would be better to be unconscious rather than feeling the way I do.
So that’s me. A little insight to these days I think helps people understand a bit better because quite often people will see me and think I don’t look ill. That’s the tragedy with invisible illnesses – unless my eye is droopy or my face swollen then I just don’t look ill. I just look like a fairly miserable little hobbit, wearing sunglasses in winter and shuffling along with my walking stick.