Level-Up: Part 49

I’ve been thinking a lot about what to do with this Level-Up series after hitting the 52 weeks mark. I’ve been wondering if I should quit it altogether. Maybe a year of recording this illness is enough, both for me and for you reading it. Not that I stop being unwell or facing new challenges because I stop recording it, of course, but I’ve been thinking that maybe people have seen enough of my journey. (I really hate saying ‘journey’.) I spoke with a few people about this and they all thought I should continue, even if I switched up the format or left a little more time between posts, but I just didn’t know.

It’s not just about not wanting to be a bore. There’s something about learning to live with and around a chronic illness that makes you not want to look at it all the time. For me, moving toward a place where I’m still disabled but trying not to let it be a barrier means not focussing on it all the time, even when every day is coloured by it in reality. When you have an invisible illness in particular, you’re forever swinging a pendulum between wanting to blend in and give the appearance of being fine but also wanting everyone to appreciate that you never feel great and it’s a big achievement for you to be there doing some kind of regular activity. How much you want to swing one way or another changes by the day, so it’s a tricky thing to navigate and still left me undecided about this blog series.

This past week I set myself a challenge. It maybe wasn’t the wisest task given how wiped out I’d been the week before, but I challenged myself to walk to the local shops and back (three streets each way, plus shop time) five days in a row. I did surprisingly well until I got to Friday. I managed nicely through to Thursday, including cashing in my 7th coffee loyalty card.


On Friday I was out of puff, super dizzy and my throat was so sore I could barely swallow. I almost forced myself to do it for the sake of ticking the box, but I had to give it a miss. I felt bad about that. It felt like a little failure, even though I knew that just being able to capitalise on the good days was a huge improvement considering where I was a year ago. I decided to go back and read part one of this series. I very rarely read back over these posts, even though my counsellor suggested it would be a good idea on the bad days.

I didn’t really recognise the person in that post, neither emotionally nor physically. I was incredibly broken by this illness then. I’ve become so much tougher that the person in that post seems like a stranger and it wasn’t even a complete year ago. I was trying desperately to overthrow the control it had slowly taken over me for those first few years, but I was still struggling. Physically it had been the week I walked to the deli by myself for the first time. I remember that day. It felt like the most difficult thing I’d ever done and the biggest achievement. The strange thing is, walking to the deli isn’t physically much easier now. I’ve built up a little more strength from doing more walking, but in terms of how the symptoms affect me, not much has changed. I just accept that’s how I’m going to feel now and try, within reason, not to let feeling unwell stop me. I don’t give in to it. I fight back. Over the past year I’ve basically had to teach myself how to walk again, albeit slowly, with some stops, with a sway and just over short distances. Looking back put some perspective on having a week that let me do it four times in a row. Four is no less amazing just because I didn’t make it to five.

Without Level-Up I doubt I would have remembered the deli trip as well. And what, as I go on to hopefully do new things, if I forget them along the way and don’t have a record for how much more I push myself to achieve? This series has been a lynchpin in me learning to live with my disability. It hasn’t just been a reminder of the journey (there’s that word again) but it’s also encouraged me to do more because I want to be able to write about lovely things if at all possible. So I will continue to write this series, but it’ll probably become fortnightly after part 52: to give me a break from looking too closely too often, to make sure I diarise enough to look back on and to bring you along with me. If you still want to come along you’re more than welcome. And if you think a year was about enough, thanks so much for sticking around. If you read everything it meant you read about 50,000 words. You could have read a brilliant novel in that time, but you gave that time to me instead. Your support is appreciated more than you can possibly understand.

Every Sunday (I know it’s Monday) 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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