Pink Horror! Pink Terror!

I have been meaning to write. I’ve a backlog of drafts – but I’ve not been well enough to sit up and write for long enough. I’ll detail all the horrible stuff at a later time, just as a list, because part of this endeavour is just to note all the things that happen with my body so I have a record for reference. Today’s note is about the ESA50 form, the ‘big’ Work Capability form. Mine arrived 2 weeks ago. I’ve been arranging to get help to fill it in, which is why I’ve not begun on it yet. I have an appointment with an Independent Benefits Advisor tomorrow, which was only confirmed today. This is fine – it’s a charity and I know I’m very lucky to have help nearby – they have fitted me in. I’ve not seen a benefits advisor before – but after last years failure, last years ESA nightmare, I’m trying to get as much help as I can, as is advised by every Disability charity.

So, I screwed up the courage to look at the form. Forms terrify me. I’m not going to lie, they ramp up my stress and anxiety levels. I really have to MAKE myself look at them. Particularly forms with deadlines. This has a strict deadline. You get a month, and it takes that to get everything in order. I’ve been working on my ESA claim for 7 months – getting help takes organisation, persistence and patience. The qualities that I had before I got hit with a physical and mental kosh, but don’t have now. Indeed, if I had them, I might be able to get a job. So, I look at the form and I realise I’m having a really tough time reading it. Really tough: most of the form is printed in pink ink on greige* recycled paper. Good on the recycled paper. But the pink… it’s all the same pink, but different tints – so lighter bits and darker bits. It’s all the same font, but different sizes. Shit. I can’t read the damn thing. The words and boxes are moving around in front of my eyes. It’s like herding cats. I have been having migraines and seizures (hence not writing) so I know my brain is a bit rattled, but I’m trained to look at pictures etc. Seriously, that was part of my degree – I’m trained to decipher marks – I’m really good at ambigrams** etc. But f*ck me if I can look at these pages for more than a few seconds before I feel dizzy. It’s not just stress.

I’m hoping my visit tomorrow will help. Even if the Advisor just confirms that it’s not just my stress that is making me blind to the form. I’m also going to look at some online advice from Benefits And Work*** as they are a solid group of people. I may even call the DWP and ask for more time on the form. I won’t be able to write everything I need to write in the small boxes and may have to type/dictate and print out things. Also I have photos of self-harm to add and also an illustration of some of the less pleasant elements of my condition to organise – I can’t find a medical illustration of ‘Self Evacuation’ on the web that matches what I have to do. And I think it’s important that whoever deals with my claim shares my life experience as closely as possible. I want them to try and fill my size 10 orthoses**** stuffed trainers as fully as possible.

Something nice to finish with: since before my Mum died, my Dad has been frantically destroying and re-building the house. We created a ‘book room’ from one of the bedrooms: lined with bookshelves, a media unit with a nice sofabed. Now we’re just, just on the edge of finishing the living room: more shelves, media unit. And this week my very kind cousin and his lovely son came over and tended to our garden. They cut down a massive Bay Tree which now allows so much light in the garden. Most of the house looks like a hoarders paradise, but we have two lovely rooms. I can’t do much physically to help – I used to. As a kid I helped paint the house etc. I planted most of the garden as a teen. But I am going to help by encouraging my Dad to do what he has planned, and helping make decisions and visiting building suppliers etc. even when I’m feeling rotten. Because it’s all I can do for my Dad.

*Greige – grey/beige colour.

**Ambigram: https://en.wikipedia.org/wiki/Ambigram – famous ones are found in the film ‘Angels and Demons’ based on the Dan Brown book. John Langdon is a master: http://www.johnlangdon.net/#ambigramshttp://www.johnlangdon.net/#ambigrams – he made those used in the film and the lead character is named for him. I’m not a big fan of Brown, but I admire a good Ambigram or any exciting calligraphy.

*** Helpful group, worth the subscription money: http://www.benefitsandwork.co.uk/

****Orthotics: “an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system” – mine are like this: Custome-made-orthosis.jpgI have flat feet, one lax ankle, one frozen ankle and I pronate. The above is not my foot, it’s an image taken from the internet. I wish my feet were so happy. I’m actually a size 9, but I have to buy size 10’s to fit the above in. Also I have to wear shock absorbing anti-pronation trainers to walk, because my flat feet and hypermobile knees don’t absorb shock energy, so they get damaged in shoes that don’t help. I’ve only been able to walk since I was 21 and got these things in order. From 12-21 I could barely walk at all. My left leg and foot atrophied, didn’t grow and I developed one big leg and a limp.

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