Adapting Activities to do with Family and Friends by HMSA’s content creator Sophie Harvey
Being able to do activities with my family and friends is important to me, but like most things with chronic conditions, making adaptations has been necessary. I remember thinking social things were just going to tire me out. Thinking, ‘If I can’t do it well, then I won’t do it at all.’ I ended up isolating myself from family and friends, because I thought ‘If I can’t interact with them the way I used to when I was ‘healthy’ then there is no point.’ However, now I realise the people who genuinely care about me, are the ones willing to spend time with me no matter what we’re doing. It doesn’t have to be all or nothing like I thought it was.
Through lots of trial and error, I have now found activities that allow me to spend time with family and friends, without putting me into ‘zombie mode’ for the following days. For example, we go for drives instead of whole days out. In the car we can have a chat, listen to music and explore new places together. It’s perfect for me because it’s minimal walking, and I can use my energy to engage with my family and friends while I am seated and comfortable. Also, instead of spending 3 hours at a party I only stay for 30 minutes to an hour. That way, I can still have fun and participate whilst pacing myself. In addition, rather than playing games like Trivial Pursuit or Settlers of Catan, which require a lot of mental energy, we can play luck based games like Spoons (perfect for a Spoonies!), Snap or Ludo. Adapted activities like these, still allow me to have fun with family and friends whilst pacing, and without missing out because of my symptoms.
Being open and honest about my symptoms has allowed the people close to me, to see where my limits are. They’ve learnt to be flexible. And really, my friends and family don’t mind doing these adapted activities if it means we are together, and making memories. It’s the shared experiences that count. Having something to talk about, something to connect, and say ‘Oh remember that time when…’. It doesn’t have to be all or nothing like I use to think it was. It doesn’t matter if we’re simply watching funny cat videos together. It’s still making memories, still spending time with each other, and still making a connection. That’s what really counts.
There are people out there who are willing to spend time with you no matter what adaptations you need. They are the special ones. Now, I will leave you with this Dr. Suess quote: ‘Those who mind don’t matter, and those who matter don’t mind.’
Sending you all lots of spoons!
Sophie
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