Monday, 16 September 2019

Defeated by Chronic Illness?

There's a quote from one of my favourite books, The Perks of Being a Wallflower by Stephen Chbosky, that basically says "So, this is my life. And I want you to know that I am both happy and sad and I'm still trying to figure out how that could be." This is how I feel right now. I've had a fantastic mini break with my boys at Chessington World of Adventures this weekend and yet here I am, entirely defeated, beaten by the villain that is chronic illness. That thief of joy, health and hope.

Chronic illness
David Mao | Unsplash

To be fair, I've got to give my body some credit here. It did an incredible job of holding out all weekend. I felt physically and mentally really good. At the top of my game. I was walking around all day long, often carrying my heavy toddler, exerting myself in a million and one ways but I was happy, I was alive and I wasn't in any pain.

Then Saturday afternoon, I had a feeling that things were starting to decline. I was getting some mild pelvic pains and my head was pounding. These are very normal things for me so I wasn't overly concerned but I remained cautious and we retreated back to our hotel room for a quiet afternoon away from the crowds.

Sunday morning arrived and I felt good. I felt really good. And then, it all started crumbling in on me.

On the latter part of our train home, I noticed a pain in my lower back. By the time we got off said train, my knee felt like it had been twisted backwards. Within another half an hour, my upper back seized up. I sobbed hysterically as each breath rippled pain down my spine and tightened my chest. I spent the first hour at home, crying in bed and feeling sorry for myself. Hating myself for putting my body through that. Insisting that we could never go anywhere or do anything fun ever again.

That's just it, isn't it? That's when chronic illness robs you the most. When you've had a great time with loved ones and feel happier than you've felt in a while. It rears its ugly head and reminds you of what your life really looks like. Fear. Pain. Anxiety. Constantly trying to balance what needs to be done, what you want to do and what you can realistically manage. You're granted little joys, little wins but the big ones, the ones that mean the most, almost always come at a price.

You end up questioning if it's even worth it.

Yesterday I might have said that it's not because I was engulfed by the grief that goes hand in hand with chronic pain. Today I'm going to say that it is, at least for the most part.

There are no guarantees with chronic illness. Every day is a gamble where you don't know if you'll hit the jackpot and have a pain-free day or if you'll leave with the booby prize and struggle. But if we're too scared to live because of chronic illness, are we really living at all? And is that really what we want? To allow what is, at best, an unwelcome house guest to deprive us of all the things we enjoy in life? I don't think so.

With our trip to Disneyland Paris on the horizon, I've got to admit that I do have more anxieties as a result of this short break. I don't want to feel broken in my happy place. I want to be able to make the most of every moment. So today's call to action is a little different.

If you're reading this and also have a chronic illness (physical or mental) then please let me know what helps you out the most when you're travelling or having a particularly busy day by leaving a little comment below. Your tip might be just what I need to survive Disneyland Paris this winter so thank you in advance!

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