Ehlers Danlos Syndrome, Chronic Pain, and Mental Health

I have this issue with my author career and general life called chronic pain, so I thought I’d start doing these little update posts because so many people ask me how I juggle my health, writing, and running my author business without having some kind of mental/physical breakdown. The truth is, it’s not easy, and more often than not I DO end up having some kind of breakdown. November 2020 has been a prime example of this, with me having to be benched from author work for two whole weeks due to some serious health problems (I mean what else do you call over thirty shoulder dislocations in 2 weeks?). It’s frustrating as all hell, especially if you ask Mark, who will tell you I’m a total and complete nightmare when I can’t work. So, I thought I’d fill you guys in on what I’ve been doing for the last two weeks (besides pulling my goddamn hair out- it’s super long now too by the way and I need a haircut so bad- thank you lockdown!) So uh, without further rambling ado, I present… my life lately.

I’m writing this letter because recently I’ve realised that despite having you in my life for the last five years, there’s still a lot of things I haven’t managed to let go of from before you came. I never expected you to come into my life, and when you did, I was in no way prepared…

One of the best parts of my new schedule, in my opinion, is my evening routine, which has managed to seriously increase the amount of sleep i’m getting as well as the quality. Everyday still isn’t perfect of course, but i’m finding that waking up is alot less of a challenge than it used to be, so i thought i’d share my routine, and the products that make it so amazing, with you!

I think, and most of the Chronic Pain and Invisible Illness community will definitely agree with me here, that perhaps the most painful part of living with invisible diseases like Ehlers Danlos Syndome, isn’t the physical pain at all.

Instead, it’s the pain that comes with the social side of this condition that takes the biggest toll.

It’s been a long five weeks since I last wrote on my current WIP project or published anything on my blog. To be honest, I have been burned out, and everything I was writing I hated.

The last three years have been insane for me, culminating in nothing short of 1,500,000 words published and a handful of brand new and equally terrifying diagnoses. It’s been a lot, and I can’t deny that my mental state has thoroughly suffered, to the point where only one month ago I couldn’t bear to look at Indigo Dusk, the current book I’m working on.

When I consider it all, it’s no wonder I’ve been so depressed and anxious, with authors pumping out books left right and centre, and me trying to keep up while battling Ehlers Danlos Syndrome. I suffered pretty badly with externalising my self-worth, and this ultimately left me feeling like nothing I did was good enough. That even on my best days, success with my conditions and the hand of cards I’ve been dealt is nothing short of impossible.

So, I took some time, reset, read some amazing books, and honestly just let my brain recover from the utter trauma that is publishing eleven books in only 36 months.

One of the biggest obstacles for me when i was learning to live with my Ehlers Danlos Syndrome diagnosis was working out what i was now allergic to in terms of skin and hair care. Many of the staple products i had relied on for years were suddenly leaving me with awful flaky scalp, itchy rashes, or dry skin, so I realised it was time to go back to the drawing board and change the products i was using. Please bear in mind every single person is different when it comes to work for them, but these are recommendations and it might give you a place to start.

I get a lot of compliments on how creative I am despite the fact that EDS makes buying clothes that are both stylish and comfortable a bit of a challenge. So, for this week’s confession I thought I’d reveal which clothes I love, why, and where you can grab them too! Hang on to your sparkly pants Zebra’s!

Online, people see my life as magical, where I never have to go to work, have an incredible boyfriend and a crazy cat called Moo. Where books seem to flow out of me in a torrent of unstoppable words. But what aren’t you seeing?

Well… I’ll tell you.

I talk to a lot of chronic pain sufferers, whether that’s because I’m looking for advice, or they’re looking for advice from me. However, I always seem to end up seeing the same thing both externally and internally and it got me thinking.

Chronic pain sufferers struggle with self-worth.

Why is that?

Is it because we are worthless?

Is it because we lose our worth to these diseases?

No.

Absolutely not.

“100 out of 100 relationships that involve caregiving fail.”

-Dr Phil

It’s very rare these days that I see something which makes me irritated enough to write a blog post about it. But here we are. I came across this little pearl of wisdom from Dr Phil via my friend @Queenof_thebookworms who is also a fellow chronic pain sufferer on Instagram. (Side note- she’s really cool- you should definitely go follow her if health related positivity and book love is your thing.) And I was stunned.

Back when I was first diagnosed, Mark made a real effort with me to keep the romance going, and came up with some simple, cheap, and cute date ideas that we could enjoy together without me having to worry about flaring up the next day.

Here are my top five.

I think the holidays makes people like me, people with chronic pain and invisible illness, take stock more than others, and a lot of the time I think we end up more disappointed than average Joe. It almost seems cruel that with this disease you are faced with so many unknowns and yet one unwavering certainty, that you have this thing for life and that it will limit you, that it will take things from you.

It’s been one hell of a year!

My second trilogy completed, my first two signings attended, two brand new diagnoses, new medication, a visit from my best friend, who crossed the Atlantic, just so we could meet for the first time, and a personal best on all counts listed above! It’s been a busy, grueling, testing year, but according to the figures, my best one yet as an indie author.

A lot of people ask me one question in particular when it comes to living with chronic pain.

How do you do it?

Or similarly I hear-

I don’t know how you do it.

I don’t know how you live like this.

The sad reality of the fact is, that chronic pain is my life now, and I don’t get a choice. Well, I guess I could curl up in a ball and retreat into the depths of my very comfortable bed for all time and never be seen again, but that’s not much of an existence now, is it?

I’m asked quite regularly how I manage to stay so productive while fighting EDS, Chronic Fatigue, Fibromyalgia, POTS, and swings in my blood sugar which affect my health, so I thought I’d give you guys an insight into how I operate. It’s taken me a good two years to perfect this routine, and more than once I’ve thought about delaying releases, so I can lie around and feel crappy in bed. Luckily for me, I haven’t so far, and I think the fact that I’m a professed workaholic without a 9-5 job really does help keep me productive.

Whenever people ask me about my chronic pain… I find my answers to be… how shall I put this… Lackluster. It’s a complicated thing, these diseases which have changed my life in just a few short years. Its complicated like a set of invisible dominoes you can’t see, and that most people doubt even exist. So, I am gonna try and explain this thing, this invisible thing, which most people doubt exists, in a way which is easy to understand.