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.

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?

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.

There isn’t any question about why I became a writer. It’s that reason you never want to list as motivation, but something which often puts you on the path you least expect, and which if you’re lucky like me, turns out to be the exact place you should be.

I was desperate.