It’s not the most creative of titles I know but then I’m not feeling creative, I’m feeling angry.
If you’ve followed me vaguely you’ll know that I’ve had a tricky year. I know there are few who would list 2016 as a good vintage but for me it has been the worst.
It actually makes me angry that I feel like that (see? Anger, that’s a theme here) as 2016 was the year I married the man of my dreams, my soulmate. We are talking head over heels, thunderbolt, takes my breath away love when we talk about this guy. He’s my world. He’s everything I thought I’d never have whilst being everything I ever wanted. And don’t get me wrong the marriage hasn’t let me down, my fairytale hasn’t burst it’s more that my fairytale ending seems to have taken place in some kind of dystopian nightmare where everything has a price.
See, I haven’t had the smoothest of lives; don’t get me wrong it hasn’t been the worst either but was definitely more soap opera fodder than the stuff of fairy tales.
I grew up at the less affluent end of Thatcher’s Britain, I lost my dad to suicide when I was 12, I then lost all of my friends as they felt grief wasn’t in the Just Seventeen list of in things, go figure. My first ‘love’ abused me physically & mentally. I dropped out of university because of crippling agoraphobia & was so hapless in my early 20’s that when I saw Bridget Jones in the cinema my companion exclaimed loudly that the drunken, pitiful Bridget in the opening sequence was me.
I had a fairytale wedding when I was 26, complete with glitter & candlelight but lacking a Prince Charming. My husband was controlling, belittling & violent. Three years after getting a marriage certificate I got a non-molestation order.
The acrimony of my divorce led to further struggles with my mental health and my post separation resurrection as a strong, independent woman with a well paid job (my dream job as a Clinical Nurse Specialist in Palliative Care no less) was short lived. I had a ‘breakdown’ & was having to raise a small child on very little money (my time on ESA is well documented in the things I’ve written so I’ll spare the details now but let’s just say it was bleak).
Despite the bleakness I fought on. I’d hung onto the strong bit of my self description. I put myself through therapy, I followed treatments, I was able to be a damned good mother & somehow, miraculously I often think, I met and wooed the man of my dreams.
Our path to the aisle wasn’t smooth but by the time we got betrothed things were good. We had a perfect little love nest, beautiful children, both had rewarding jobs, my mental health seemed well treated. All was well.
Well, most was well. I’ve always been a sickly person. An asthmatic baby, accident prone, patient zero in many an outbreak of lurgy and the creaky, sore body of an old lady. It was almost a joke however, that I needed new lungs, new knees, new ankles (I dream of new ankles), my sicklyness was a part of me. It was problematic but not overwhelmingly so. Until last winter that is.
Again, I’ve documented my health in a fair bit of detail on here & elsewhere but suffice to say I am now disabled. I have Ehlers Danlos Syndrome (a diagnosis I state as it’s the one that the arguing doctors have mentioned the most, though it’s still not set in stone) which causes me a lot of pain & frequent injury to all of my joints. The last few months have been hard. I’ve had battles to get my pain under control; I’m not talking about moderate pain here either but excruciating pain all over my body, all day everyday. Battled I have though. I’ve taken on doctors, specialists, pharmacists and my own demons to get to the point where my pain is a bit better managed (science geeks I now wear a buprenorphine patch which gives me the equivalent of 5mg morphine every hour). I did it I thought! And just in time to actually enjoy Christmas. I’m Mrs Claus yet the joy of last Christmas was diminished somewhat as I was battling pneumonia and, with hindsight, the beginning of the EDS worsening.
The thing is life isn’t that straightforward, Ehlers Danlos certainly isn’t. Since my background pain has been well controlled this last fortnight I’ve fallen 4 times, put my left knee out of place, twisted my back/ribs, subluxed my right hip & have a very bent & painful little finger. I’m not used to being disabled. I was a hyperactive child, a teenage that would dance for hours, a nurse that would race around wards spinning a thousand metaphorical plates. I can’t do pacing and learning limits. And I’m angry that I have to.
I am awaiting an appeal date to fight the DWP for Personal Independance Payment and I’m furious that I’m having to I’m angry about the stress it’s caused me & my husband. I’m angry about the treatments I can’t afford & the humiliation I’ve had to endure. I’m so done with the whole thing that I don’t have the energy to describe just how angry I am.
To top all of that off today is December 1st. A day that any christmasophile looks forward to. My tree is up (thanks to my sister), I have an elaborate advent calendar (thanks to my husband) & I was determined to begin enjoying my first Christmas on wheels. Except I’m ill. And I can’t.
I have some bug that is making me sick. Throwing up causes me excruciating back & neck pain due to my over bendy joints not having a scrap of self control & so haven’t eaten in 36 hours, I’ve not drank in about 18 hours. I feel weak, tired & sore. I’m surmising that ‘normal’ illness is yet another thing that gets harder when you’re disabled. And I’m angry about it. I’ve had enough of it. Enough of being strong, enough of fighting, enough of pain. I’m angry that I can’t get tucked up & taken care of. I’m angry that this is happening.
I was supposed to be getting my happy ever after. I’m not saying I deserved it but I do feel that I’d earned it. This isn’t it. As in love as I am & as happy as my husband makes me this isn’t the way I thought things would be.
I’m angry. I’m angry with God, with life, with the world. Most of all I’m angry with me that I ever thought I’d get the fairytale. Silly, silly Dolly.