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What helps you?

Member Blog Post By LAUREN DALY

Whether you struggle with Ehlers-Danlos Syndrome (EDS), Long Covid, are Neurodivergent or have any other exhaustion inducing element to your life, we all know that when exhaustion hits, it feels like you have been hit by a truck. Suddenly someone has turned your energy out, just like hitting a light switch. You are suddenly in the dark.

I have EDS and Long Covid, plus I suspect I am Autistic/ADHD so I get burn out.

I am only just learning about how to handle this as a busy, working Mum.

I have gathered some ideas about a few things that help me to cope. What helps you?

1) REST: It sounds so obvious, but it was only in the last few months that I learned to rest when the exhaustion hits. I used to reach for sugar, coffee, tea to keep going. Covid took those away from me as I cannot touch these things now, as they make me feel so ill. I learnt that lying down and having a 'Nanna nap' is actually ok. I sometimes lie with the kids when they play or watch TV. This is ok.

2) SLOW DOWN: Much like number 1, my long Covid means I simply cannot join in with every social event anymore. My fear of missing out has to be pushed right down and I have to really focus on what is important in the day. Guess what? Some things don’t happen but life goes on. Turns out missing out is not such a big deal.

3) EAT WELL: Hard when you have multiple allergies, but finding a way to eat nutritious food (ideally supported by a good nutritionist or even someone on other social media who aligns with your values) can be life changing. I’m still working on it. Having said this, food guilt is super unhelpful, so by eating well, I mean finding that balance between what feels good and what does good for your body.

4) SELF CARE: Proper self-care means anything that makes you feel better and gives you time to just BE. It will be different for us all and some of us have minutes not hours. It all counts.

5) POSITIVE SELF TALK: Every time that guilt monster rears its ugly head, tell yourself that it is ok to take care of yourself, it’s ok to do less, your kids will be ok if you don’t play with them right now etc. I have to do this several times a day. A mantra like “I can do this” or “I am doing the best that I can right now” helps.

6) MINDFULLNESS: No, you won’t be able to spend hours a day meditating, but you can still do some stealth mindfulness. A great app to help you do this will help, just a few minutes each day will do wonders. The mindful shower has been key for me as I am already still.

I now advocate and volunteer for SEDS as I really like doing something for others, and I think what SEDS do is really worthwhile.

It is also really helping me gain confidence, and I hope to one day soon also do some speaking on their behalf, starting in a small way with their support.

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