My Top 10 Spoonie Essentials
Being a spoonie is hard. With myalgic encephalomyelitis, I have good days where I try not to do too much (as I will have to pay for it over the next few days) and I have bad days where I can barely do anything at all. On the bad days, I won’t be leaving my bed much, so I’ve compiled a list of my top 10 essentials to keep me half sane on these days.
1. Ear Plugs
Getting your sleeping pattern regular is one of the hardest things to do with ME, especially if you are prone to daytime napping which disturbs your sleep cycle. I found that I was often kept awake by even the quietest of noises, which made me frustrated. Eventually, I remembered that I had a pair of foam ear plugs that I used in my first year of university to block out the sound of my drunken housemates, who used to kindly wake me up at 5 a.m. Even a cheap pair of foam earplugs used for travel will muffle a lot of those annoying noises so that you can drift off to sleep easier.
2. Heat pads (or heatable plush)
When I can’t take any tablets if I feel sick, or I can’t take any more tablets, I always microwave my heatable plush duck Bill. The heat helps to relax muscles and because he smells like lavender, he helps me chill out a bit. You can get microwavable lavender wheat bags that are similar, but just not as cute. The stick-on heat pads you can buy are good if you ache but still need to move around but they aren’t reusable and are quite expensive.
I love blankets! My body is really rubbish at controlling its temperature so blankets are useful in the summer and the winter. Too hot for a duvet? Use a blanket! Duvet too cold? Add a blanket! I love really soft fleecy ones the best, but I actually use cheap IKEA ones as they are easy to wash or replace.
4. Medisafe App
This app is super useful and helps me keep track of which tablets I’ve taken and when. My memory has gotten pretty poor and brain fog makes it difficult to think about basic things. The app gives you a little reminder when it’s time to take your next dose. It also has a feature which warns you if you are running low on medication and need to get more. It’s free, too!
OK, so I’m obsessed with notebooks. I have a few different ones for different things but the best thing I have ever done is put a notebook by my bed so at night when my mind is buzzing, I can write down all my thoughts — empty my mind, as it were. It helps me feel more relaxed when going to sleep as I know I won’t forget it if I write it down. I also have a diary to help keep track of doctors appointments and plan my week.
6. Extra long phone charger
Unless you are super lucky and have an outlet next to your bed, you are going to want an extra long phone charger. Having a phone nearby is important for emergency purposes and for contacting help but smartphones also serve as some sort of entertainment so you are going to want to keep it charged.
7. Face wipes (cleanser and cotton pads)
When I’ve had a really long day, the likelihood of me being able to take my makeup off properly at the end of the day is pretty slim. Face wipes or face cleanser nearby helps to stop mascara smudges getting on my pillow cases. It also helps keep my face a little less spotty. I use Superdrug’s Cleansing Facial Wipes for sensitive skin because they are cruelty-free and vegan.
8. Lavender oil
When I need to sleep, sometimes I just can’t switch off. Sleep reversal (sleeping in the day and being awake at night) is pretty common in people with ME, and this is something I want to avoid as much as possible. Lavender oil just gently calms my mind, allowing sleep to happen naturally. I know some people don’t like the smell of lavender, but a lot of the cheaper oils don’t actually smell that nice. Invest in a good quality oil as it will last longer and smell so much better!
9. Cosy PJ’s
I’m at the stage now where I own more PJ’s than normal clothes! I even have three onesies — and still have my eye out for more. My rest days usually mean I get out of my night PJ’s and get into my clean daytime PJ’s! Staying cosy can definitely help keep you more comfortable and happier so its worth having a few sets so that you never run out! My favorites are my fleecy Bambi ones, my long sleeve “Adventure Time” ones and my short-sleeve “Adventure Time” ones. All from Primark so they were reasonably priced!
10. Laptop, tablet or Kindle
My laptop is my best friend! I honestly think I would be so lost without it. It allows me to blog, watch Netflix or YouTube and interact with the world all from my bed! I’m very lucky to have a MacBook Air that has a really long battery life, weighs very little and doesn’t overheat. That being said, I really struggle to look at the screen for longer than half an hour at a time so I have to break up my time into manageable chunks. I also have an app called F.lux installed which adapts the color of the display depending on the time of day. It helps my eyes from feeling sore and stops me from feeling wide awake when it’s time to sleep. It’s free to download, too! I don’t have a tablet but I borrow my boyfriend’s Kindle. They are much smaller and lighter than a laptop, but just much easier to lose in bed!