I’ve been debating whether I should post this, but ultimately, I wanted to show you that it possible to have fun when you’re chronically ill. Yes, you have to do things differently, but it is possible!
In this post, you’ll find out a few ways to make sure you have fun when you’re chronically ill, even if your illness stops you doing a lot of different things. You’ll also find out about my 18th birthday and party!!
18th Birthday Party
Last weekend was my ‘Birthday Weekend’ (because you have to spread out the celebrating)! I had an amazing party — it was just like an Open Mic, except with more people, different people and not at the beginning of the month. I played a lot of piano (…on a keyboard) and did two sets! I didn’t think I’d even manage to get through one! Okay, so I was completely strapped up with kinesiology tape and I had to strap up my knees up while I was there, but my legs didn’t give out and my arm only got fatigued rather than giving out too.
Set Rules and Boundaries
The only way I knew I was going to get through my party was to set some rules. They were as follows:
These may seem pretty strange if you don’t know my background/symptoms, so let me do a quick recap. One of the symptoms I have is dysaesthesia, which means my skin is painful to touch. This one is where the “no touching me” rule came from. I also hate people touching me anyway because… you know… germs.
I really didn’t want anyone to mention my health over the weekend so that I could feel more like a normal (nearly) 18-year-old. Only a few days before was I told that I have Hypermobility Spectrum Disorder and probably Ehlers-Danlos Syndrome too. Very few people knew I had an actual diagnosis, but people knew I had a rheumatology appointment. Those who did know wanted to talk to me about it, but my party was just not the time to do that! I even made my mum write an email about how people weren’t allowed to talk to me about my health!
Now, these rules were broken — by me as well as other people — but it meant that not everyone was talking to me about my health, and very few people touched me. Yes, I was still in pain and felt sick and I couldn’t just forget that I’m chronically ill, but these rules meant that I could enjoy my party as much as possible.
The moral of this story is to make sure you set rules and boundaries. It’s okay to tell people not to do things so that you can have fun when you’re chronically ill. You need to do this so that you can enjoy yourself.
Learn When to Say “No”
This tips ties in very nicely with the previous one. Learning to say “no” to people is very difficult (for me, at least), but it’s a necessary evil.
I have had to learn to say “no” to a lot of things since being chronically ill: when offered food I can’t eat, going out when I’m too fatigued or in too much pain, when people try to touch me and so much more! It’s not just saying “no” to other people, though. You have to learn to say “no” to yourself. There have been times when I’ve wanted to play guitar but my skin is too sensitive, times I’ve wanted to play piano but my hearing is too hypersensitive. There have been times when I want to go for a walk and take photos but my legs are too weak to walk and my arms are too weak to hold the camera.
But it’s not just saying “no” that you have to learn to do; you also have to learn when to say “yes”. You have to learn when to do things that will be worth the flare-up. If I hadn’t said “yes” to having my 18th birthday party, then it wouldn’t have happened and I would have spent my birthday in my room by myself. If I hadn’t said yes, I wouldn’t have witnessed my friends singing ABBA — or joined in!
You just have to learn to listen to your body but to ignore it when things are worth it.
Happy Birthday to Me!
To finish off my ‘Birthday Weekend’ we had my actual birthday! This actually felt like a normal day in the afternoon, because I was just sat upstairs watching TV and recovering. I’m surprised I lasted as long as I did after my party and a busy morning opening presents and sorting stuff out.
The afternoon was pretty busy as well, even though I was in bed, because I sorted out all the photos for my photography website (something I’ve been meaning to do for a while). I also watched a lot of Life on Mars — highly recommend, I’m rewatching it for the third time!
Take Time for Yourself
Taking time for yourself is important anyway, but it’s especially important when you’ve been busier than usual or have been with a lot of people.
I knew that I just needed some time to myself to recover/recuperate. There were so many people at my party, and then I had all the business and excitement of it being my birthday. I just needed that half-day by myself so that I wouldn’t get too overwhelmed.
If you ever feel overwhelmed by too many things happening, symptoms or anything else that makes you feel overwhelmed, just take some time for yourself, even if it’s just a few minutes. It will make such a difference. You’ll be able to gather your thoughts and make sure you’re not overdoing it.