I think the thing which frustrates me most about having M.E (except for it feeling like I have invisible anchors tied to my eyelids and heavy cement instead of blood, of course) is how it’s changed me.
Not only can it invert many of my natural personality traits of being positive, confident and patient, it’s also reduced how active I am. In my head, I can still play football at 100 MPH, run around the park with the kids, swim 25 lengths and generally be all bouncy like Tigger, chum of Winnie the Pooh. But nowadays, I either give up on those things or try one and pay for it the next day. Even simple, non-energetic activities require motivation I don’t always have.
So it’s got me to thinking – whilst I go through the process of trying to manage and even improve my M.E, how can I reach an acceptance of my new limitations? I still need to enjoy life, feel fulfilled and not become a couch potato. Consequently, I’ve come up with 5 things…
- Re-connect with an old pastime: Many of us have hobbies or talents which we’ve lost touch with over the years, whether it’s the old clarinet in the back of the wardrobe or picking up a pen and doing some creative writing again. That last one is me; I’ve always been good with words and had some poems published once so, whilst I aim to get back into all that if I can, for now I’m getting in touch with that side of myself once more through this very blog! Realisation number 1 is why this website exists.
- Discover a new skill or hobby: It’s a fact that you haven’t tried everything in the world yet! It therefore stands to reason that there is something else out there that, once discovered, you will enjoy and even realise you’re quite good at. The exercise classes I’ve been taking are my example so far – I’d never have associated myself with yoga in a million years before but now’s the time to forget what you think you know about yourself and let something new in. Maybe you could take an adult learning class – I’ve thought about cooking and Spanish. Maybe you’ll get a sense of enjoyment and accomplishment in the outdoors through some light gardening or cycling. What about photography or computer skills? The only limit is your imagination.
- Re-visit your ‘lost’ loves from a different angle: For me, whilst I do still play football in a more limited way, I scratch the same itch by coaching a children’s football team. I also exercise my (alleged) football knowledge by getting involved in a Fantasy League. Could you teach or write about something you used to do that you can’t now? Or get involved in another way?
- Adapt how you do it: It may be that whatever you used to love doing isn’t entirely impossible any more. Maybe you used to dance or do lots of DIY. If M.E is about pacing yourself and choosing carefully what you spend your limited energy on, never feel bad about spending some of your spoons, your energy credit, on something that makes you happy. Fulfilment is very important. You may just have to discipline yourself to do less of it, that’s all. If you used to do an hour of something – and even if in your head you think you’d still like to – just try 20 minutes of softer dancing or build something smaller in your tool shed! Trial and error, see what you can manage. Even these shorter bursts will add to your happiness rather than abandoning something entirely.
- Accept that you are still you – and you still rock! You haven’t had a brain transplant (as much as it feels like you’ve had a body swap with a 95-year-old sloth). You are still who you always were, it’s still in there but now there’s a new version of you. This has given you the opportunity to look at new things in new ways. It’s You Version 2.0.
I’m still at that point of reaching acceptance so this list is not complete, I’m sure. So, over to you…
What do you think? Does any of that resonate? What else have you tried to accept your new limitations? Please – share with us in the comments below.