So. I’m back!
I hope you’ve noticed the fancy face lift I have given this place, and the updated bio on the ‘home’ page.
First off, ‘Dear Body’, my poetry pamphlet received two extremely favourable reviews in both Acumen poetry magazine and the London Grip magazine. Acumen poetry magazine said “This is a moving and salutary poetry collection, the poems precise and controlled, expressive without excess or sentimentality. It contains valuable lessons for those of us fortunate enough to live without such imprisoning health problems.” An excerpt from the review on London Grip magazine started “This short collection of twenty-two poems explores the duality of mind and body, separated and brought into conflict by physical illness. The poems are written with an expressive cathartic tone, a unique and wit-ridden perspective and a resilient refusal to be overcome.” Dear Body is available for purchase in the ‘shop’ tab. If you click on the London Grip you can read the full review.
As I write, I am attempting to set up a charity! There is a huge gap between
My health has been keeping me rather busy. I have 15 diagnosis’ now, and one possible pending. I feel like my illnesses’ have become dominoes and I’m getting a fair way through the set! One reason I have had to slow down is that I have had a constant tachycardia (high pulse) of 130+, whether I have been sitting, standing or sleeping. That was caused by POTs syndrome, and general illness getting worse. It is being slightly controlled by a new medication I am trialling. But guess what? Another freak thing was picked up on my ECG. A T-Wave inversion. It was most likely caused by the flu virus attacking my heart, and is a variation of myocarditis. Odd, eh? I thought I was now un-shockable, but my body finds ways to keep me on my toes.
I am now the proud owner of pink hearing aids with glittery moulds. You can see them at fifty paces, but moulds offer me much better sound quality and the option to put them in myself; which proved impossible with the more discreet models on offer.
Thank you to everyone who has shared my petition. I am extremely grateful to everyone who has signed and shared it. The decision is being appealed at a local level. The sad fact is, if I moved 40 minutes down the road I could be prescribed it tomorrow. I am hoping it will be prescribed after appeal, because my dislocations are really getting me down at the moment. I feel a tad bitter, really. The fact that I put my own dislocations back in is playing against me, because if I was in A+E every two to three weeks, spending thousands of pounds in NHS funds, managers would be desperate to stop those attendances. As a palliative care patient, and just general human, I do not want to be going and sitting in A+E up to twice a month, and certainly don’t want to wait hours for someone else to put my joint back in. The other day my shoulder started to sublux for the first time. Mum and I just put it in a sling, and just prayed (well, sort of. I’m not overly religious anymore) it wouldn’t fully go out of the joint. Thankfully, it didn’t. My right knee is playing up big style though, with even small subluxes (partial dislocations) causing huge pain and huge bruises. If you know anyone of influence, or know anyone who can circulate the petition, it is linked here.
Going back to poetry related news, I have had a few fun things happen. I have won the Young Persons Prize in the Poem and a Pint competition with a poem called ‘Grandad’. It is about my grandfather who passed away when I was eight years old. I have had a poem selected for the upcoming Cumbrian Poetry anthology published by Happenstance Press. I have also had a poem selected to promote the Kendal Poetry festival, and to be included in Poetry First Aid kits. I am now a member of the writing squad, an organisation that mentors the best young writers in the north west. I am extremely excited to have been chosen, and having only been to one meeting I have already made some valuable contacts, and met some lovely people.
A few months ago I started attending a new hospice for respite. We decided to make the switch because the old one, very sadly, wasn’t meeting my needs. The new hospice is a very different environment (I have graduated from kids to an adult set up), but offers me the complete rest and recoup I need. Hospices are very special places, if you or a family member ever need one please don’t be scared to go. The services they offer are so personal and incredible. Hospices’ very often have extremely tasty café’s (I have it on good authority!) that are open to the public. None of us can know if the money raised will be needed for our own care in the future.
We have also managed to get to Manchester and attend a few shows, including Sister Act, Hairspray and my guilty pleasure the Dancing on Ice tour.
I will also be the blogger in residence at the Kendal Poetry festival which kicks off with the open mic (tomorrow night, 6th September 2018). You can see a full programme and book tickets to any events by clicking here.
Well, considering I feel like I have done nothing over the last six months, it actually seems like I have done a fair bit!
I’d like to leave you with the words of the late Claire Wineland. Clare grew up knowing that she was going to die young due to cystic fibrosis. She had a lung transplant last week which was a success in itself, but unfortunately 24 hours later she suffered a huge stroke, and then passed away – at just 21. Claire is the reason I decided it was okay to talk about palliative care on YouTube, and was extremely wise beyond her years. “Go enjoy your life. Really. I mean that seriously. Go enjoy it. ‘Cause there are people fighting like hell for it.”