I’ve been invisible on the blogging scene for months now. I couldn’t explain why, but writing just seemed so difficult and I couldn’t put down words – not for the blog nor for reviews. At times the tiredness, fatigue and brain fog has been overwhelming – I accept that depression and Long Covid were setting in too.
My lovely girl undertook an art foundation course at university this year – just the right course to be studying during a pandemic when the universities have had to close their physical doors. Imagine doing an art course over zoom and actually producing the art. So we found ourselves living in an art studio as the paints, pencils, canvases and sculptures gradually infiltrated into every part of the house. Back in the summer you would have been excused for thinking that my washing line was full of dripping body parts! I will explain….
The final project of the year needed to be a piece that would push the lovely girl to her limits creatively and also to explore a subject that she is passionate about. She chose to look at living with chronic illness, with a genetic condition and then more specifically how it feels to live with our genetic condition : Ehlers Danlos Syndrome. Her plan was to make a short film and who better to be her subject than her mother. She spent hours interviewing and recording me, some on good days, others on real brain fog days – I actually sound drunk in some of the recordings, although not a drop of vino had passed my lips! How many people like hearing the sound of their voice? Just imagine hearing it over and over again as it is used for the “sound track” for a film – it was awful. Hearing my speech slurred nearly brought hubby and me to tears.
It was during her time making this film that my lovely girl told me in no uncertain terms that I need to start writing again – she can see a difference in me when I am writing and interacting with my global body of chronic and blogging friends. She is now away at university studying liberal arts and pushing herself out of her comfort zone, and has inspired me to push myself. So without further ado I am sharing the link for our short film with you and hope that this is a fitting re-entry to my blogging world.
“it’s all in your head” https://vimeo.com/548817170
PainPalsBlog 
Claire, it’s lovely to see you back on Pain Pals.
Your daughter’s video is amazing. It’s eyecatching and your words, your voice telling your story gives such a good insight into EDS. It’s sad though. And annoying that it took so long to be diagnosed and that you were told it was in your head. Lots of people have probably been told that!
Take care and I hope this has helped you get back to writing.
Liz x
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Fantastic video! You both should be proud of the outcome. Slurring and sounding drunk when I am not is why I gave up recording a podcast. Welcome back and gentle hugs!
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Oh Claire, it’s lovely to see you back on the blog. I’m sorry for how things have been over this year; all I can say is that I hope you have the time and space you need to rest and look after yourself. We all love you very much and I’ve missed you, but I also want you to do what’s right for you, whatever that is, whether being in the blogging world or taking a break. Being part of the community and having an outlet can be a bigger benefit than we realise sometimes, like your daughter suggested, and sometimes we need the downtime away from it, too. She’s a smart one, that girl.
You have done brilliantly with this post and it would be lovely if you’re able to print it out and keep a copy so you can both look back on this. And keep a USB of the video locked in a safe for good measure. I’m getting to cynical in my old age, I start having back-ups of back-ups these days 😂 A proud mama and a huge achievement for your daughter.
The video on the right from the beginning is so weird and oddly hypnotic, isn’t it? I love the cuts of the old films. I’ve no idea how she’s put all this together but it’s amazing. And you’ve described the crux of your experience physically really clearly and visibly.
To hear “it’s all in your head” is one of the most angering, insulting, infuriating things you can hear.
Think zebras.
A wonderful project and an excellent re-entry to the blogging world, Claire. Pass my congratulations onto your daughter for me. I hope she’s enjoyed her art course, she’s shown her talent here and I think she’s done brilliantly!
Caz xxxx
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Great to see you back, sorry this year has been a hard one. Your daughter has captured the world of chronic illness brilliantly in this piece. The soundtrack and imagery create the perfect jarring hypnotic experience.
Oh I hate hearing my voice!
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Claire, welcome back, this is so lovely and what a way to come back.
Many of us can identify with your daughter’s video I am sure.
take care lovely xx
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That was so good! I have EDS and indentified of so much of what was said in that video x
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Hi Claire, welcome back it’s great to see you here again.
The film is amazing and you and your daughter should be very proud of it. Sorry you’ve had such a hard year…it’s been hard for many if not everyone.
Blog when you can , rest when you can and have a lovely Christmas, all of you.
I hope your daughter is enjoying her course. 💜
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