Self Care is Real. Part 8 - The Top 10 Guide to Coping with Chronic Illness.

If You'd Like to see the introduction to this series, please kick here for Par One

Self-care is something I’m fairly sure we’re hearing endlessly about these days, particularly in the online chronic illness community. Tips for self-care routines, Instagram pictures of people proudly taking baths with their books and cups of tea are half of what we see. For me – it’s so much that I almost tune it out. When posts come up on the Mighty or similar about self-care I barely open them anymore because I know what they’re going to say “self-care is important, here are some tips.” They’re not wrong. Self-care is important. I want to try to put across that it’s not some kind of ‘fad’. Self-care runs deeper than any daily routine or bubble bath. So no routine tips from me today. You guys can google search for that. I want to explain why engaging in self-care really is an integral part of coping with chronic illness.


When we think about self-care, it can take many shapes and forms. It can be reading, taking a bath, a skin care ritual at night, a quiet period where if we are away from them our loud family, doing something that helps us relax. It’s also putting things into our daily routine that allow us to pace ourselves. It’s prioritizing our medication and supplement routine. It’s not staying up late out of obligation when we know we’re going to pay for days. All these things are self-care. They tie in a little bit with my previous post – Prioritizing Yourself. As with many aspects of coping with chronic illness – this is something that every person has to do, healthy or not. It’s just a need that’s amplified in someone with chronic illness. Practicing self-care not only helps us endure the curve balls we are constantly thrown, but it helps us remember our worth. It helps us treat our bodies with love.

There was a period of time before I had accepted myself as being chronically ill that I simply continued to push myself and push myself. I didn’t fully understand what was happening to my body, so I kept punishing it until I literally collapsed. More that once. There’s a characteristic I have, which I think is just part of human instinct. I’ve heard other people with chronic illness describe it. When I want to, I can ignore the signals my body is giving me. My body might be aching from head to toe with fatigue, and I can just push the pain to the back of my mind. I can switch myself on to auto pilot and keep going. Sometimes I can do it so well that even those closest to me wont notice. I will fool even myself. For so long I did this. Instead of stopping and caring for my body, I pushed it. I did too much exercise, too much work, too much daily travel. I collapsed with ‘seizures’ that to his day nobody understands. It's an oddly common phenomenon among POTS and EDS patients. Not enough funding means not enough research means symptoms like this that are not understood. Those 'seizures' happened 3 or 4 times and even still, I couldn’t admit to myself that I was just too tired.


It took a change of Dr to point it out to me. He actually went against normal protocol for treating POTS and told me to stop exercising for a while. He told me to practice mindfulness instead. In his 'very French' accent – he said ‘you are just not ready. You are a flat Tyre, we need to pump you up first.’ To be honest I was never that great at the mindfulness, but it was the beginning of my learning to just stop.

And then something happened that forced me to stop moving. Forced me to sit still and think. I had heart surgery. A relatively minor one - a bit like getting stents put in. For those of you that might be familiar with medical terms it was a cardiac ablation with pericardial balloon. Try saying that 5 times fast. It was under general anesthetic, which was what did the damage for me. I was expected to recover quickly, not being diagnosed with EDS at the time. But I didn’t. For the following 3 months I was stuck somewhere between bed, my front deck, and the bathroom. With a few small adventures out of the house. I couldn’t move. My body wouldn’t let me. So I had to build a routine for myself that was entirely centered around self-care. From the minute I woke up and couldn’t get out of bed before letting my meds kick in first; to the minute I went to sleep propped up on pillows to ward off the permanent headache. It was all about how to get through the day with as little pain and as much time to heal and recover as possible.

I had ‘movement’ to try to do. I won’t call it exercise. I had mindfulness to try to get the hang of. I would colour for hours. I would sit in the sun listening to audio books. Everything I did was for me. To heal my body so I could get back to my life.


Since then – I have come a long way. Not everything is my day has to be purely for me. I have something to give again, which feels good. And the reason I have that is because I gave my body time to get the energy back. I have, however, held on to a lot of the rituals I developed in that period of recovery. I listen to my body now. I know what to do when my body tells me it needs a break. I am kinder to it. Self-care is not just a routine. It’s self-love. Its loving that beautiful body that has come so far with you. Think about how much it has gone through. All the tests. All the hospitals. All the medication. Needles. Surgery. Injury. Pain. Fatigue.

For most of us, our bodies have been dealt a pretty awful card when it comes to the genetics department. Or it might be auto-immune disorder that plagues your body. Or cancer. And we’re still here. Our bodies have pulled us through. They’re fighting so hard. So instead of pushing them endlessly, instead of feeling down on them, punishing them for ‘being broken’ by trying to ignore the signals they give us; stop. Care. Love your body. Treat what you put into with love. Treat what you do with it with love. Because it works bloody hard for you. Even if it can’t do what a healthy person’s can. Even if it can’t do what it used to. Self-care is self-love. It's real, and it's a part of our lives we cannot forget about. We must remember how important it is. How important our bodies are. They might not be perfect, but they're ours.


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