Being Creative With A Long-Term Condition

For regular visitors, you may have noticed that my personal blogs have been somewhat erratic of late. While I’m keeping up with my frequent reviews and interviews with brilliant writers, my own voice has faded into the background somewhat. Rather than jumping back in with some quippy post about the changing seasons (maybe next time?) I thought I’d tackle the issues behind it head-on, in the hope that other people in a similar situation might find it useful, and that others would be more aware of the struggles people with long-term conditions are having.

Until recently, I’ve been a flurry of activity. Managing my site, my workshops, marketing my book, writing new submissions, running my community writing project, all alongside the wrangling of a four-year-old. This summer, it all came to an abrupt halt. Partly because of taking time out to visit friends and family in the UK, but partly because I think I was well and truly burnt out.


Unfortunately, I’m sure lots of people can relate. Long Covid is a new and unpleasant reality for something like two million people in the UK, never mind those already suffering with chronic illness (I have friends with arthritis, anxiety, depression and chronic pain, just to name a few). Even if you aren’t someone who feels they fall into this category, the ‘getting back to normal’ for many of us following the lockdown frenzy of the last few years has felt like a mad dash to get back to being as stressed as possible before all of this kicked off.


Seeing as I'm sitting around more, I invested in a nice plant to look at.


As someone who tries to create new stuff for a living (and help other people do the same), I find that running on low energy is simply not an option. While I might have been able to scratch my way through a set of books or exam papers in my previous life as a teacher, it’s tricky to find activities that I can do when having an oh-my-god-where’s-the-coffee day. And, given that my body is in the process of fighting off some pretty horrible nasties (I’m on long-term immunotherapy for melanoma), I shouldn’t be pushing through this stuff anyway. Here are some challenges and triumphs I’ve been mulling over in my crash of a summer (while re-reading the entire Lord of the Rings books).


Frustration


This is a biggie. Just because my body decides to get dizzy and tell me I need a nap AND an early night, doesn’t mean my brain agrees. I still have ideas, goals, dreams, things I’d love to do. Before the end of summer when my treatment changed, I’d managed to get all the way back up to 10k in my running. I flew back and forth from France to the UK to host workshops and celebrate the launch of an anthology. Now, I have to satisfy myself with a walk around the block, a few hours at the desk and then a sleep. I'm sure others with chronic conditions are familiar with all of this stuff.


At first, I did not do well at this. Railing against the unfairness of it all, I watched my Twitter feed far too much, all the brilliant writers that were winning stuff, publishing stuff, generally being fabulous, while I was having a sit-down. As time has wore on, I like to think I’m coping a little better with this.


Unfortunately, French hospital food is just as awful as the UK.

No, I don't know what it is either.


For starters, (hopefully) this will be a period of recovery, perhaps over a year or two, where everything beyond the state of my body needs to take a back seat. It’s also (finally) forced me to think more clearly about what I actually want to do. With so little energy and time available, I’ve had to seriously streamline my activities. The nice thing is I’m actually writing more, now I’ve decided to cut down on other things. I’m actually using the meditation app I downloaded years ago. I’m certainly getting through more books than I have, if only because each time I go to hospital I have between three and four hours of sitting about on a drip. I can’t say the frustration isn’t still there, but I’m trying to counteract it with a heavy dose of self care.

Control


Going hand in hand with frustration is the way I’ve had to relinquish all control over what I do and when. Appointments are handed to me and I go along. My treatment changed from every four weeks to every three weeks. Recently I’ve gone from having a blood test every week to twice a week. People say ‘oh you’re so strong’ but I am literally just doing as I’m told. It’s really hard to have so little agency over how well you feel and what you do with your time. I imagine it's very similar for others with chronic conditions.


Much as I give small choices to my child to give her a sense of agency (apple or pear?), I’ve been trying to focus on the things I can control. Keeping up with my daily pages is more than ever an exercise in releasing frustrations and managing emotions that it is a search for inspiration. Small things like planning a really nice dinner or a haircut have taken on a whole new meaning.

I’ve also had to deal with anxiety, a brand new experience for me. Not knowing what will be happening even next month and certainly not next year, fearing the worst, having to put total trust in a bunch of French doctors, all of these things have brought on panicked, overwhelming feelings that leave me incapable of thinking about anything else. People who know me have learnt to expect random phone calls at points like this, or for a WhatsApp group to suddenly get a request for cat pictures to bring me down. Relying on others is something else I’m having to learn, and it’s probably not a bad thing that I’m doing it more.


There are some benefits. I read ALL THESE BOOKS in five days.

Other People

Look, it’s not your fault, ok? When you haven’t spoken to someone for a while, you’re bound to ask them things like, ‘so, what have you been up to?’ or ‘how is the book going?’ Just don’t expect a particularly enthusiastic response. Maybe I spent a whole day in bed because I felt dizzy that day, or actually I only managed 500 words this week. As well as dealing with a lack of energy, people with long-term conditions spend an awful lot of time just dealing with their emotions about the whole thing. Along with managing my own expectations, I need to remember that, for the rest of the world, life goes on. I understand that you’ve been rushing about while I’m plodding along over here. As long as you’re taking some time for me, it’s all good.


I also understand that it’s hard to know what to say. Until very recently, I was the same. If someone was dealing with something difficult, I’d most likely try to jolly them along, or try to get them to look on the positive side. I didn't realise how unhelpful it was, ok? Now, I’ll take a different tack. It’s perfectly acceptable to go with something along the lines of, ‘well, that sucks,’ or, ‘bloody hell, I’m sorry.’ And that’s it. Maybe ask them if there’s something they really want to talk about, but that’s it. Often as not, simply venting that I’m stressed, anxious or furious at the world is what I need. A little listening goes a long way.


Finding fun in the little things with my daughter

Did I Ever Do Self Care?

Now I’m really in a situation where looking after myself is an absolute priority, I look back and wonder if I was ever any good at this. Sure, I had a bath now and again. Yes, I may have painted my nails occasionally, but have I ever really stopped to think about what I want to do? What makes me feel great? The things that make me smile no matter what? I certainly hope the answer to all of these is yes for you, but I’ve noticed that taking actual time for myself is an uncomfortable experience.


When my body is quite literally at stake, I’m learning. Things other than chocolate and wine can bring comfort and nourishment. Whole afternoons sitting still aren’t a waste, when you are trying to heal. If there are any positives to take away (and dammit there had better be), I do hope that this can be one of them.

Hopefully, my energy will stay buoyant enough to check in with you lovely lot on a fortnightly basis, which is my new (streamlined) plan for blog writing. But if not, I’m sure you’ll understand. And most importantly, make sure you look after yourself with the same earnestness as someone who has to.



 

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