While training as a nurse, I was introduced to the Swan metaphor. While appearing to glide gracefully across the water, not a feather out of place, a swan has to be kicking its feet like mad in order to get anywhere. I was told that that was how nurses were supposed to appear – calm and supportive, while behind the scenes, they were dashing around, furiously juggling all the tasks that came with patient care. I’m not sure I agree with this – I personally want a nurse who is honest about the pressure that they’re under, and who is supported through it to make every patient feel cared for. I’m not sure hiding stress is healthy. But boy, am I good at it.
This particular swan has not been very healthy of late. Rather than kicking like mad, I’ve been gliding along on a wing and a prayer (that’s enough bird images now, Pops), while pulling my legs in, desperately wanting to get off the bloody pool and hide in whatever the birdy-fetal position looks like. The irony of this is that at the same time, I’ve been more in the public eye than ever before, which has piled on the pressure.
Being gobby and opinionated, I’m reasonably happy in front of a camera. I never remember anything I’ve said afterwards until I watch the footage back, but otherwise, I don’t get too wound up by it.In fact, I enjoy it. In the last few weeks I’ve been filmed by BBC (though they never used it – Hugh Pym is off my Christmas list), ITV, London Live (x2), interviewed by LBC radio, and screening tomorrow (and yes, very controversially), George Galloway and his wife for Russia Today. I’ve had a lot of fun. If these legs of mine don’t manage a full time clinical career, medical media is something I’d love to do. Unfortunately, normal life doesn’t stop to allow this media malarkey to take place, and neither does my syndrome. The Junior Doctor Contract issues have hit me hard emotionally – I’m genuinely scared by it – and this hasn’t helped by trying a new pain medication.
I’ve been through a fair bit in my little life. I know fear, and a blinding, all-encompassing grief that steals your voice and deadens your soul. Loss and I are old acquaintances, and now he’s trying to take my mobility. Somehow, I have always put my head down and carried on. I have taken on projects that distract, surrounded myself with the love of incredible friends and family, and come out the other side. But over the few weeks, at least mentally, I wasn’t carrying on. Internally, I was hiding away, praying the world would leave me alone. I was finding excuses to avoid activities I would normally love, putting up barriers between myself and friends that may ask how I was, and behind a front of impassioned speeches to camera, I was coming home and crying for no reason. Sleep consisted of a few hours of tossing and turning, before fully waking up and lying for hours staring at the ceiling. Nothing I did, no amount of lovely comments (which are still nevertheless appreciated), or drastic haircuts could pull me round, and that was scary. Suddenly, I simply didn’t like myself, and to a worrying degree.
I started a new pain medication, Gabapentin, a few months ago. It has to be weaned up in small doses, and initially, I had no problems. I worked up to a highish dose, and stuck with it. I didn’t think about any particular issues, I just carried on. It was only after a particularly rough evening, when I promised BoyFace I would get some help, that I thought to look again at the side effects. Rarely, it can cause depression and even suicidal thoughts. I have never experienced Depression. I have loved ones who still spend time fighting off the Black Dog, and if it is anything like how I have found myself feeling recently, then if it were possible to respect them even more, I would. I’m slowly weaning my meds back down, and planning on seeing my GP next week. I’m already sleeping better – I’m not back to normal Pops yet, but I’m optimistic that I’ll get there.
I was not expecting much of a pick-me-up to come along anytime soon. Call it fate or serendipity, but at the most incredible time, I had one of the most incredibly uplifting and humbling experiences of my life.
I had been worrying about money again. I needed to fund my final year, I want to go abroad on my Elective this summer, and I needed a lightweight wheelchair, and soon. The chair was going to cost around £2000. The NHS was providing £140, a lovely charity £500, and the rest was down to me. I didn’t have an option, I was going to need to spend the money, and fast. I wasn’t coping with the physical aspects of work. I mentioned all of this (along with a photo of my new shiny wheels-to-be!) on Facebook, bemoaning the state of wheelchair funding nationally.
Within a couple of minutes, I had a message from a friend asking if he could contribute. Then others followed, asking for a crowdfunding page. It was really lovely, but I felt strange doing it myself, and bizarrely self-conscious. Then a wonderful best friend came to the rescue and made one for me. I wasn’t sure what to expect – maybe a couple of hundred quid at most, but anything would help at this stage.
What happened next I still can’t fully believe.
Suddenly, that page became, as my housemate declared, ‘clickbait’. People I knew well, people I’d met years previously, and even people I’d never met or heard of before, were donating. Friends were making me and my page their Facebook statuses, asking their friends to spare a few quid. Others were taking the time to message me, to say that they weren’t able to donate, but wishing me all the very best.
In less than 20 hours, I had £1500. Currently I’m on £1750 on the page, with a £100 private donation. This is more than I need, and I’m going to ensure that decent chunk goes to Wheelchair Foundation (http://www.wheelchairfoundation.org/), a charity which gives chairs to people around the world who wouldn’t get them otherwise. No one should have to use a skateboard as a wheelchair, or be carried everywhere by a relative, but that actually happens in some countries.
There are genuinely no words for how I feel. All I have is an incredibly huge, heartfelt, thank you. At one of the lowest times of my life, I suddenly had one of the biggest surges of support, and no one even knew how tough I was finding life at the time. It was just pure generosity, unwittingly when emotionally, I really needed it most. It has become so much more than a set of wheels (needed though they are). It has become an incredible show of love and care when I most needed it.
If I ever was a swan, (and let’s face it, it’s not the first creature one thinks of when presented with my chubby little face), I’m not quite back to full kicking yet. But thanks to a group of incredible people, I’m still gliding, and will continue to do so. Thank you. Thank you so so much.
You do know about access to work don’t you??!?!?! Please tell me someone has told you about that. They will help you with things like wheelchairs. I got a proper lightweight one fully funded through Access to work and the NHS. Here’s my story http://www.jenfarrant.com/the-fight-for-a-wheelchair-part-1/
LikeLiked by 1 person
Thanks Jen. Sadly they can’t help me until I’m working next year – though when I am they may get me a second chair for work. That will mean I can keep one clean chair and one for outdoors, apparently!
oh good, as long as they can help you!