Jessica Taylor-Bearman

Our featured author today is @jayletay.bsky.social , her books are informative, moving, hopeful and uplifting #DisabilityPrideMonth You can read more about Jessica & book her for a visit here: authorsalouduk.co.uk/speaker/jess...

A black and white photo of Jessica and her husband Samuel in the woods, sitting on a log and looking at each other and laughing

This photo makes me so happy. Life is very uncertain at the moment, especially Mr Taylor-Bearman's health. We are in unchartered territory as we see multiple specialists this month to see what can be done to improve his current quality of life. Cos it is crap atm.

It is M.E. Awareness Day and I'm not well enough to properly post. So if you could share my books A Girl Behind Dark Glasses, A Girl in One Room and A Girl Beyond Closed Doors, which chronicle my life with severe M.E., I'd be eternally grateful.
amzn.eu/d/fM3b8Jh

Last week I was in the Isle of Wight on a break before Samuel has an operation. I realised that it was the first time in nearly 2 years that I've relaxed and not felt like the world was on my shoulders. The stress of ill health in both my baby and my husband and my health has been nonstop 🙃

It turns out that movibg house is incredibly stressful and overwhelmingly exhausting when you both have chronic illnesses. Who knew?! I'll be taking quite a while to recover I think, but I'm so relieved to finally be away from the damp and mould.

Noise sensitivity can be so incredibly isolating. When I've become overstimulated, my whole body shuts down. I can't take in the noise anymore and then can barely speak back or make sense of anything.

In 12 months I've dealt with my hubby having four hosp admissions, needing oxygen, arterial punches, diagnosed with chronic conditions, my son's health needs. So much trauma has happened. But I have to believe that like a phoenix transforming for the ash, I will come out of this stronger.

This new year has already been filled with appointments and there are more to come. I'm still trying to process a lot of our appointment yesterday at the hospital for Samuel, my husband. So much to take in.

Jessica is sitting in her wheelchair. She is wearing an electric blue suit and her hair is wavy with low lights.

On Monday I did a guest talk lecture on the importance of being an advocate to student nurses at Canterbury Christchurch University. It was a fantastic opportunity to speak about M.E. and also raise awareness about the severe M.E. sufferers desperately stuck in hospital today.

Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social

So I'm currently in London whilst my son has a sleep study done, then *hopefully* life is going to be a bit calmer. Does that mean I'll actually be able to write?!

It's not until May but due to my M.E., I've had to start it a year early (i started before her birthday this year). There is something about poetry that just makes me feel free.

My sister will be 30 next year. This is the girl who gave lots of her life to me by being my young carer from the age of 11. I'm writing 30 poems in a special little book with illustrations. It's called Thirty Trips Around the Sun and is full of poems about our lives. It's been so therapeutic.

Am looking forward to using this platform. At the moment, everything that was stable in my life has completely fallen apart. My husband who's my main carer has become v.sick, we've had emergencies and hospital admissions galore. So I maybe quiet for a while as I learn to live in this new normal.