MAccording to the Office for National Statistics, more than a million people in the UK have lived with Covid for a long time. Most of the media coverage of it was gloomy and disturbing. That is understandable. Chronic disease is gloomy and disturbing, especially in the early stages of the disease. But there is something else that no one tells you: it can be both hope and happiness. I got sick from post-viral fatigue from the flu a few years ago and what I craved above all else was advice and reassurance. I’m not going to claim I’m fine. I’m writing this in bed. Maybe there’s cheese in my hair. But I will offer my 10 best tips on the good life, even when it is unhappy and painful.
You are (not) what you eat
No diet will cure you – ignore any wellness ad on social media that tells you otherwise. But it is useful to check for shortcomings. Take an iron test. Take a vitamin D supplement in the winter. And eat Twirl. For medical purposes.
Celebrate small victories
One of the strangest things about chronic diseases is that things that haven’t caught my attention before can be Herculean tasks. Try to make a list of three wins a day, from getting out of bed to washing your hair. It’s not about lowering your expectations, it’s about acknowledging yourself for accomplishments. You’re doing great. Even if you don’t like it.
Find your people
Friends and family can be great support, but it is often helpful to find people who really understand. Try Instagram accounts for chronic diseases such as chromillillness humor, laraeparker, youlookokaytome and notyourgrandmasuk. The Rest Room Podcast has a lot of practical tips, and is that a fact? it will only make you laugh.
Ups and downs
Every day is different with chronic diseases – and that’s really hard. Don’t be discouraged. Yes, a fluctuating state means that you can go from feeling good to flames, but it also means that you can feel better again. Don’t overdo it on the good days or punish the bad ones. Chronic disease is not a race; it is natural to go off course.
Don’t push it
It is human to try to “push” the disease – or to think that exercise always makes us more capable – but if you are chronically ill, it often does more harm (sometimes permanent) than good. Listen to your body. Vacation is also work.
Go with the hoses
I don’t want to be too sexy, but let’s talk about bloating. Relieving pain is helpful, but it can cause devastation in the gut. Prunes and natural yogurt relieve nausea. If you take anti-inflammatory drugs regularly, ask your GP if a drug like lansoprazole is right for you; the gastric mucosa can thank you.
Coping with bad days
Allow yourself to miss things. Cry. Take another. Forced positivity can be toxic. Allow yourself the feeling that this will pass quickly enough. Try to notice what helps you during these spells and keep these things in your arsenal, whether it’s meditation or watching friends again. You deal with more in a day than many have to in a month, so take a break.
Doctors are not gods
Although most physicians do their best, insufficient NHS funding, lack of research and skills mean that chronically ill people are too often left to fend for themselves. Don’t assume that medics will automatically offer the help you need. Explore for yourself. Persevere. That’s probably the last thing you feel when you’re fighting for energy, but if you can, do it. Remember: you are your biggest advocate and most successful expert on your body.
Chronic illness can be a blow to your sense of identity. You’ll feel like you’re racing to get back to what you were, but it’s a real quest for that WHO you were. Put on red lipstick while wearing pajamas. Sing your favorite album from your bed. It’s still you, even if you’re more tired.
The thing about chronic diseases, especially post-viral conditions, is that you have no idea when it will or will end. Living with this uncertainty can be harder than any symptom. But that means it’s more important than ever to make the most of how things stand. That’s the thing with chronic illness: a sick day can also be a good day. There will be a moment, maybe shortly thereafter, when you get sick, but realize you’re dancing on the radio. Or you’ll laugh with a full belly with a friend and find that you’re not thinking about every hard breath. Life has a habit of going on. Yours is not over yet.