The Chronic Illness Survival Kit.

A teddy bear surrounded by a thermometer, tissues, and medicine.

Audio:

With the inevitability of a train crash that you can’t look away from, COVID-19 has left many people feeling symptoms of intense fatigue, pain, & post-exertional malaise long after dealing with the virus itself. This has been termed “long COVID”, & there is some heated debate as to whether or not this is the same thing as M.E/CFS. Given the similarity of the symptoms & the fact that M.E is often traced back to viral infections like flu or meningitis, I’m of the opinion that they are the same. However, I do understand the need for caution as we still haven’t fully characterised the damage COVID-19 leaves behind.

Regardless of whether or not they are the same disease, one thing is certain; there are decades of experiences from those already with chronic illness to use and learn from. Speaking as someone who is fast approaching their 10-year anniversary of suffering meningitis, here are my top five things you will want in your Chronic Illness Survival Kit.

1. Giant Mug. An orange, steaming mug.

This is the only time when cup-size matters.

Staying hydrated is really important for a multitude of reasons; nearly every single system in your body relies on water to function, from your brain to your muscles. However, getting up to make drinks is one of the small tasks that quickly drains your limited energy reserves. You can save a lot of energy by making less drinks but in a large mug, meaning you still take in the same volume of fluid. For hot drinks, thermal mugs are useful for keeping it warm for longer. If temperature isn’t an issue, water bottles are also excellent for holding a large volume of fluid to sip away at over regular intervals, something I find particularly useful in the office. There are many different shapes & sizes out there if weight or grip is a problem, so it may be worth exploring your options before settling on a particular one.

2. Microwavable Bean Bag. A thermometer.

Hot water bottles are extremely useful for staying warm & are also very good at relieving localised cramps. However, the tightly-sealed caps are often painful & difficult to open, pouring boiling water through a narrow neck with shaking hands is asking for injury, & they’re heavy. Instead, I rely on my microwavable bean bags. I have small ones for my hands and feet, & a larger one that is a substitute for a hot water bottle. After sixty seconds in the microwave, I have a light-weight heat pad that smells nice, & doesn’t waste water once cool; it simply needs reheating. You can find all kinds of smells, colours, & shapes to suit your tastes, including lots of animal-themed ones.

3. Notepad. A spiral-bound notebook.

One of the lesser-known symptoms of chronic illnesses is a poor concentration span & short-term memory, colloquially known as “brain fog”. I’ve often tried to send a text using the TV remote, put the teabag in the washing up & the spoon in the bin, & entered a room only to forget why I needed to be there. A notepad probably won’t help with any of those things, but I find it essential for shopping & to-do lists. They make sure nothing gets forgotten, and provide a useful tool for pacing out your energy levels throughout the day to avoid the dreaded burn-out. If you don’t have a pen and paper to hand, most smartphones have a notetaking app already on them, or you could download one if not.

4. Layers. A purple cardigan.

Many things come in layers; cakes, onions, ogres… What I’m referring to here, however, is layers of clothing. Temperature regulation takes a lot of energy, relying heavily on the contraction & relaxation of muscles for both warming yourself up & cooling yourself down, which can be a problem if you have limited energy. To combat this, I often have multiple layers of clothing to hand, particularly cardigans which are very easy to pull off & on as needed. I have fingerless mittens that I wear around the house for when my hands get cold, woollen socks that fit inside my boots, long knee socks that slip on under trousers, & plenty of thin tops that fit undetected below jumpers. These all help me to regulate my body temperature when my hypothalamus can’t.

5. Technology. A pink & blue laptop.

Technology is expensive, particularly if you cannot work, however it is a lifeline for myself & many others with chronic illnesses. Social media allows us to connect with others to share experiences & advice, & also keeps us entertained while resting with films, TV, podcasts, audio-books, eBooks, music, radio, & video gaming. All of these are lightweight & can be done lying down.

Technology isn’t limited to just laptops & mobile phones, however. It includes the washer-dryer that means I don’t have to move heavy, wet clothes between machines, only to move them again an hour later. It includes the lightweight, easy to grip kitchen utensils I have at my disposal. It could include remote controls for the thermostat & lights. It even applies to the wheelchair that gives me my freedom.

We often see technology portrayed as being something for lazy people, & I’m sure that’s true to some extent. However, devices that save people energy allow those of us with chronic illness to function, & there’s nothing to be ashamed of in that.

These items won’t cure your illness, decimate your symptoms, or give you your old life back. However, life with a chronic illness will hopefully be a little bit easier if you make use of them.

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