End of the road

For months, I had been waiting for an update on my psychiatrist’s campaign to getting me a special referral to an out of area ADHD clinic in Bristol. Earlier this morning I arrived to a review appointment and found out that despite my psychiatrist being willing to prescribe a specific medicine (one I had been on very successfully in the US), have it flatly refused by my GP (regular doctor), then have the case escalated to NHS funding committees to send me to a specialist 2.5 hours away and out of our county trust, I have been denied access to the very people who specialise in my very real, diagnosed condition. I am sadly unsurprised.

My psychiatrist has done a mountain of paperwork, was prepared to appear in front of the committee (they told her “it looks straightforward, don’t bother” – to which she was cautiously optimistic), and then when she appealed, was denied funding for my referral a second time. She has gone to bat for me (and several other cases for other patients) but my case for being seen by the specialist adult ADHD clinic in Bristol has been shelved.

This leaves me without the medication I know works best for me and my brain, but also leaves others in the county who need adult ADHD care in the lurch as well.

Socialised medicine is a wonderful thing and I can categorically say it has been a blessing to have the NHS, but the mental healthcare situation still leaves people in pain. I am not a pill fiend; I just want to be seen by the right specialist and given the medicine that works best for me – even if it’s not the pill I’m asking for.

So now what? I drop off the rotation. My psychiatrist has told me that I can receive therapy – which she thinks could benefit me – but it is private. That means I need money, as it’s not NHS. I will remain on the best medicine she can prescribe for me (currently Strattera), and if I need her, I’m to let my GP know and I’ll get an appointment.

I can find my own solutions, of course. There are ways to get the medicine I want through indirect channels, meaning, sourcing the pills myself online. This carries risks, but could also be my only way forward in the current climate of budget cuts and privatisation of services in the NHS (thanks a bunch, Tories). Last time I checked, I could purchase a six month supply of Adderall XR for about $250 from a company in another country. It is tempting. Right now, I am sticking to what I’m on, doing my best to rebuild my life and brain, and stop fighting the system.

Although painful to know what I can be like when properly treated, I need to work with what I’ve got. I once built up a successful career by putting in double the effort and hours and I’ll do it again. It may take me a little longer, but I’ll get there. I’ve done it before.

On art and databases

- Written on my iPad, forgive choppy writing. –
Spent the day working through FileMaker Pro 13 (after more than ten years away from the software) and figuring out the best solutions for my art business. Turns out, most artist/art business/art collector/gallery software is built on FMP, so it’s a no brainer that to do what I need for my business, I had to buy it. I am very in favour of paying proper money for proper solutions, but it’s still so hard to part with more money than I make in a regular month from my chosen career. I know things are happening, but it’s still difficult in these “early” years.

Looking forward to launching my new online store (jenporium.com), newsletter, and pulling in some more private students over this next month.
I am determined to make it in this unapologetically difficult career space. It’s all I know anymore.

Hope to be in the studio tomorrow after two days at business admin.
Being a selling artist is so much more than drawing pictures all day… I would guess it’s closer to 50/50 art/admin. Still, I love what I do and don’t ever want to do anything else. An artist: it’s all I’ve ever wanted to be.

I stopped work around 7pm, had a lovely risotto made by my housemate Pete, and am now in my big, tatty, comfy chair with a glass of wine and Amanda Palmer’s The Art of Asking begging to be read.
So that’s what I’m gonna do till bedtime.
The rest of my career building starts again in the morning.

About sleep and sheets

I’ve learned something valuable lately… The bedding you choose to wrap yourself in at night can make or break your sleep. This may sound like I’m late to Club Obvious, but hear me out.

I’ve recently moved and now have a single bed. I’m starting over somewhat and thanks to the kindness of a good friend (and affordable rent), I have a roof over my head. He’s had his own single bed for years and so I’ve been borrowing some of his sheets and such till I can piece together my own range. We have very different tastes in this area and herein lies my recent discovery- the wrong sheets (and duvet/blanket/whatever) can contribute to insomnia.

This may not be a major issue for most people, but I have a couple of things working against me in bed (hush now): I have Restless Legs Syndrome and also ADHD. With both come a kind of hypersensitivity to tactile information. Turns out, I can’t sleep in flannel sheets. I fidget (more than usual), feel like my skin is being wicked of its moisture, and the cloth feels smothering to my body- not warm or hot, just smothering. I’ve tested this theory (during sleepless nights) a few times in the past month and as soon as I return to a smooth, cotton or poly-cotton touching my skin, I sleep. Like, immediately.

I’ve had insomnia most nights for the month or so I’ve been in my new environment. I’ve also found I’m very sensitive to the rustling of a down comforter. It feels and sounds like I’m sleeping in plastic carrier bags. I can dampen the sensation by having a cotton blanket on top of the down duvet, but I still struggle to tune out the crunchiness of a bag full of feathers and the lining that helps prevent those feathers from poking through. (Pair that with having an insomnia-related tinnitus flare-up and there might as well be a frat party of noise in my head.)

This is all new to me, as I’ve never been in a position where I’ve borrowed bedding so different to what I’m used to, and I’m not ungrateful for the offer, but I’m running on the fumes of sleep most days. Today, I sucked it up and spent money on new sheets. They’re budget-minded (I’ve never owned fine bedlinen anyway), but should help me get some sleep. Let’s hope so, anyway; Zombie is only a fashionable look until the end of this month…

sharing too much since 2003