#10 Where did all the fun go?

The importance of having fun (especially) when you have a chronic illness.

Jul 01, 2024

Let’s be honest, life with a chronic illness can get pretty overwhelming at times. There’s so many factors we have to think about on a daily basis. There’s pain, fatigue, feeling like a burden, anxiety, medication and all its side effects to name just a few. This is on top of all the worries that come along with just being a human these days; jobs, money worries, chores, looking after kids or elderly parents. There’s also the constant stream of negative news and threats of WW3 around every corner. The list is endless. It can all get a bit much and all a bit too blumin serious for my liking.

The last few years my partner and I have had our fair share of worries. There seemed to be problem after problem we had to sort out. We had deaths in the family, funerals to arrange, illness, cancer scares, job losses and redundancies. It got to the point where we seriously thought about running away and hiding on a desert island. Which we kind of did actually. After getting some inheritance money through, we went on a once in a lifetime holiday to the Maldives! But even then, half way through the trip, we got a call from our neighbour saying there was water pouring through the ceiling back home. Our boiler had decided to break. That’s when we thought, ok, running away from our problems doesn’t work. So we vowed to each other that we would carve out more time for fun instead. No matter what else was going on in our lives, we needed to prioritise regular fun times for our wellbeing and sanity. Otherwise, all work and no play…you know what happened next…

I’ve been working with a therapist and she also highlights the importance of carving time out for fun and enjoyable things. I mentioned to her that I barely have enough energy most days to do all the things I need to do, let alone the things I want to do on top of that. That’s where she spent the rest of the session explaining to me the vicious cycle we can full into. If I spend all my time & energy only on chores, it will make me feel unfulfilled, which will lead to increased anxiety and depression, which will lead to less energy and motivation to do anything, so I feel even more unfulfilled etc etc and down you go further into the hole. I never thought of it that way. That my fun times could be one of the factors contributing to my energy levels! It’s important to do something you want to do, just for you, to create balance in your life.

So my partner and I ended up making a list of things that we thought sounded fun. Such as, activities we wanted to try out, places to explore and travel to, restaurants and food we wanted to sample. We made sure to have a good mix of stuff. I needed some things I could do even on a very fatigued day. We also had small and low cost activities so we didn’t break the bank. And also things we could do inside on a rainy day so weather wouldn’t get in our way.

We also made one simple ground rule (we didn’t want too many rules, otherwise it spoils the fun right!?). But the main rule was phones are put away so there are no distractions. Unless it’s to take a cute photo, but even then, have your phone on aeroplane mode. Live in the moment. Oh and of course, have fun, guilt free.

So far It’s been great. We’ve had forest walks, picnics, seaside breaks and we’ve booked a couple of concerts. Last year we booked last minute tickets to see Kiefer Sutherland play in his band at the Cambridge folk festival. We loved watching the 24 series and had no idea he was in a country band too!! It was so much fun. We got our picnic blanket out (between the rain showers), ate yummy food from the food stalls. His songs became our summer sound track. We loved blasting out ‘on the open road’ while driving along in our VW campervan. Oh yeah, that was another thing. We bought a campervan!! The hubby had some inheritance money come through. We thought long and hard about what to do with it. We could have paid off a bit of our mortgage or put it away for a rainy day. But we thought, our life is one long rainy day at the moment. F**k it! Let’s go on some adventures. Life is short.

So now, even on the weekends that I’m feeling very low energy, we can still go out and do something fun. Even if that just means my partner takes me on a mini drive somewhere, blanket on my lap and heated seat on for my back aches (Passenger Princess much?). We blast out some music and have a sing-a-long. Although, when I’m fatigued and breathless, it’s more of a wheeze-a-long, but it’s fun all the same. If I'm to feel shit, I may as well feel shit some place with a good view right?

This was of course taken earlier in the year when it wasn’t 27c outside like it is right now!

We also make sure to have our own separate hobbies and fun. We don’t always need to do everything together. He loves to bang away on his drum kit, but my idea of a good time is sitting in my rocking chair, in total silence, reading a book or writing poetry, hot tea in my favourite mug. I’m totally loving my ‘Granny chic’ era. But the idea is to do something fun, just for you. I think people can often get swept up in trying to turn a hobby into a ‘side hustle’ or trying to monetise it. Or doing something that will look ‘cool’ to others. Or get caught up in thinking they need to buy all the fancy equipment to be able to get started. Or my previous thinking, I needed to save all my precious and limited energy for chores. But it doesn’t have to be like that.

I’m a huge fan of the author Julia Cameron. In her books she talks about ‘Artist dates’. She says to carve out some time for yourself each week to have fun. She says it helps her be more creative. Here’s a brilliant quote from her explaining what they are:

“The Artist Date is a once-weekly, festive, solo expedition to explore
something that interests you. The Artist Date need not be overtly
“artistic” — think mischief more than mastery. Artist Dates fire up the
imagination. They spark whimsy. They encourage play. Since art is about the
play of ideas, they feed our creative work by replenishing our inner well
of images and inspiration. When choosing an Artist Date, it is good to ask
yourself, “what sounds fun?” — and then allow yourself to try it”.

Mischief more than mastery. I thought that sounded like a perfect way of getting more fun in my life. At first I found it difficult to just switch off and relax. For some reason I felt guilty. I felt like I was supposed to be doing something more productive instead. Just having fun for the sake of it felt too indulgent. And of course being in pain and fatigued all the time didn’t help matters. I also thought, what if people saw me having fun, would they assume I’m not actually ill? Would they judge me or not take me seriously anymore?

But this is where kids can also be great teachers. I was over at my friends house and her little girl was sitting at the kitchen table, arts and craft stuff was scattered all over it, colouring pens, stickers and puzzle books galore. She had a huge smile beaming all over her face as she was scribbling away and doodling. I asked her why she liked doing it so much, and she replied ‘Because it’s fun, duh!’. Simple. Don’t overthink it.

So I made a promise that I would carve out the time for myself to have fun each and every week, no guilt allowed. However small that activity might be. To give myself permission to have fun for the sake of having fun!

My first date with myself involved going to a bakery and treating myself to a gingerbread man, like I used to do as a kid. I would then go sit in the park and eat it while enjoying the views of the flowers and hearing the birds song. So off I went to the bakery. The cashier asked what I wanted and I pointed to the gingerbread man. His cheeky smile made of white icing and his juicy looking gummy buttons looking irresistible.

The cashier paused and sternly asked, ‘That isn’t for you is it?’.

‘Why not?’, I replied back bemused.

‘That’s for kids’, he replied, still looking so deadly serious it was hard not to laugh.

Apparently we can’t even enjoy a silly shaped baked good nowadays without judgement. Well you will be happy to hear that I bought the gingerbread man, with no shame, and it was delicious thank you very much. Even more so because it felt like I was rebelling against societies silly norms. Fighting the system one gingerbread man at a time!!

So what about you?

How will you stick your middle finger up at your illness (and society) and just have some fun?

My partner and I are going to build some Lego this weekend and I can’t wait!!

What’s your favourite fun thing to do? Do you find it difficult to inject fun into your life since having a chronic illness? Any tips and tricks on how to manage your illness and have fun? Is there a balanced way to do both? I would love to hear your thoughts.

In my bones...

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