Level-Up: Part 36

This was a rollercoaster of a week. There were some pretty good days, but there were a couple of really tough days where I didn’t cope very well. In fact, I was almost embarrassed at how badly I handled them. I’m constantly apologising to people in case I’ve been difficult to deal with. Mainly because if I’ve been fed up of dealing with myself, I assume everyone must feel the same way. But on one day in particular I was fairly rude with people who didn’t deserve such abrupt exchanges. Hopefully they understood.

On Tuesday I hit a bit of a milestone. Actually, not a ‘bit’. It was a big one. I filled another coffee shop loyalty card and handed it in for my fifth free coffee, making it 50 walks to the coffee shop since I started collecting stamps back in the autumn. I felt that frisson of excitement in swapping it for a free latte, and I shared the picture of the completed card on social media.

coffee card

Everyone congratulated me and told me how amazing I am. But I didn’t really feel like I’d achieved that much. I should have, but I didn’t. Part of me felt uncomfortable accepting applause for something that seems so basic. At least, basic to everyone else. There was something about the 50 that should have felt spectacular, but it felt kind of flat. I brought this up in counselling this week, because I didn’t quite understand why I couldn’t believe the praise was genuine. After a lot of discussion it became clear it was because where I worry that people are laughing at me for the things I can’t do, I’m really just pointing and laughing at myself. There’s a little voice in my head that keeps telling me that I should be doing more because this just isn’t enough. Self-esteem, man!

During the course of this series I’ve mentioned several times how having a limiting chronic illness impacts upon your self-esteem, but I’ve always found it a difficult one to explain. It’s not just a physical thing. It’s about how you measure yourself too. I have always been my own worst critic but what I’m doing, often on a subconscious level, is berating myself even when I cross a milemarker because it seems such a small thing compared to what everyone else can do. Compared to what I used to be able to do.

During that session I had to face the fact that this illness has damaged and skewed my view of everyday achievements even more than I thought it had. This time last year I was so unbelievably angry. It seemed so unfair that this thing had happened to me that all I knew how to do was fight against it, wearing myself out in the process. I’d be lying if I said that my limitations don’t frustrate me still. But that anger has gone now. My illness wasn’t some kind of undeserved punishment cast upon me. It’s just a thing that happened that, in many ways, has been the making of me.

My next challenge is to stop comparing my disabled life with my old one and to start reframing my accomplishments within the bounds of what I have to deal with now; which some days is quite significant illness. My symptoms have become so normal to me now that I can forget how poorly I really am. If I set aside that I used to travel the world alone without worrying about it and look at the fact that at one point I couldn’t cross the street outside my old office to buy a coffee, to have walked to my local coffee shop 50 times is reason for a fanfare.

Truly convincing myself that I’m doing well and that I have things to celebrate isn’t going to be easy. All the yardsticks I used to measure myself against have changed, and my self-esteem needs to catch up with that. It’s daunting to think that I need to break such ingrained habits I wasn’t entirely aware that I had. And if I’m perfectly honest, I’m really not sure at this stage how I’m going to do that. It involves a big personality shift. But that’s what professionals are there for. To guide you through these transitions.

I trust my friends and family. I know they’re not laughing at me. I know they’re coming on this journey with me and feeling those highs and lows with me. Thank you for all the encouragement you’ve given me. It’s appreciated more than you can possibly know. I just need to figure out how to make myself believe that I’m a success and that I’m enough as I am. I think I’m going to need a lot of Brené Brown pep talks!

(If you have some time, this talk is brilliant and much funnier than you might imagine. I’ve watched it more times than I care to count and I don’t think there’s anyone who wouldn’t find it useful.)

Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.


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