I Did Not Want To Do This; Writing About My Disability.

Before I get into this, please let me just say; there is nothing wrong with disability/chronic illness blogs or content. I follow and read and enjoy lots of chronic illness and disabled creators online and I enjoy what they do. So when you’re reading below, please just keep in mind that there’s no shade being thrown by me!

I Am Disabled.

There, I said it. It’s the truth, it’s out there, it’s real. Like many disabled folk I have multiple complex diagnoses and my life is a juggling act of managing these conditions as well as the various side effects of medications and as yet undiagnosed conditions. It actually SUCKS.

Chronic illnesses are like Pokemon – you gotta catch em all! Seriously though, once you get labelled with one, it’s not so long until more follow until you have a whole deck of them! Currently mine are;

  • Myalgic Encephalomyelitis (M.E) – imagine the worst bout of flu you have ever had – you know, aching in your bones, so exhausted you can barely hold up your own head, tired just from breathing – and then imagine living with that EVERY DAY.
  • Complex Regional Pain Syndrome (CRPS) – my right knee is agonisingly painful all the time, 24 hours a day, 7 days a week, constantly. In a nutshell; there’s been extensive trauma to my knee over the last 20 years which resulted in my brain believing it should be in pain. so even though it’s actually pretty stable now, my brain manufactures pain signals in my knee, resulting in misfiring nerves and a whole lot of suffering.
  • Hypermobility Syndrome (HMS) – my joints are very bendy and slippy, which causes multiple partial and complete dislocations every week. this is part of the reason my knee is such a mess!
  • Fibromyalgia – similar to M.E with added “bonus features” such as brain fog (forgetting how to speak, what I’m doing etc), widespread bone deep pain and swelling, sore joints, headaches and on and on. Personally, I believe Fibromyalgia and M.E are the same thing.
  • Postural Orthostatic Tachycardia Syndrome (POTS) – my heart has trouble pumping blood to the right places, often blood pools in my extremities. When I stand, my heart rate accelerates rapidly, to try pump blood to where it needs to be. This means there’s not enough of the red stuff in my brain, causing dizziness and fainting.
  • Complex Post Traumatic Stress Disorder (c-PTSD) – I had an abusive childhood as well as many medical traumas which have all become embedded in me as trauma. Complex PTSD is not the same as the type you nay have heard of, it is extremely difficult to treat. Symptoms include flashbacks, audio and visual hallucinations, nightmares, black out episodes, insomnia, anxiety, and depression.
  • Slow Transit Bowel Disorder – without getting into the gory details, I can’t poop often. like once every 9 days is good for me. Yep it sucks.

Those are the diagnosed ones, my official list if you will. I’m currently under investigation for Endometriosis, Poly-cystic Ovary Syndrome, Multiple Sclerosis and heart murmurs.

Why don’t I want to write about it?

As I’m sure you can imagine, these illnesses dominate my life. As much as I refuse to be defined by my disabilities I still cannot control the variable impact they have on me day to day. I wanted to write and create and share about everything and anything in my world other than my conditions – because it really is so much more than a list of ailments!

During the last month, my health has taken a sharp downturn and I’ve had a lot of time to reflect on my blog as well as thinking about what i want to achieve in the future. I don’t write regularly and the reason is because I’m trying to avoid writing about my disabilities (which affect me every single day) I’m left with little to actually write about, as well as little energy to create with!

I still believe that my life is much richer and vibrant than a dull list of medical problems and I will always seek to share all those moments and adventures, however I finally realised that I can’t write and build a successful online platform without including my health. As well as it being virtually impossible to separate the two, it’s also struck me as being disingenuous and I always strive to be honest and open.

So what can you expect from me in future?

More – more content, more creativity, more honesty, more sharing! I want to stress again – my life and my blog aren’t defined by my illnesses. I still love interior design, upcycle projects, nature and creating community and all those things plus more will still be here! There’s just going to be more than the occasional vague reference to me not feeling well, that’s all. Because I don’t occasionally feel vaguely unwell, it’s an every day battle and one I sometimes find hard to keep winning!

What about you? Perhaps you’re a disabled person yourself? Or maybe you’ve never heard of any of my diagnoses? What would you like to see from my blog/social media in future? Here’s a sneaky hint…. keep your eyes peeled for our latest colourful home creation….. coming soon!

One Comment on “I Did Not Want To Do This; Writing About My Disability.

  1. This is so relatable- it’s hard finding that balance between not making it the sole focus but also not ignoring it, I definitely haven’t found the magic formula yet! I always think you do a brilliant job of being honest and showing they’re a (large) part of your life but not your entire being ❤ xx

    Like

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