Being trans with fibromyalgia

Fibromyalgia affects approximately 1 in 20 people. And 9 out of 10 of those are cis women.

So being trans in this space isn’t exactly ideal, given the ways both are misunderstood in medical environments.

The majority of people with fibromyalgia are cis women over 40. If you do not fit that demographic, doctors don’t always know what to do with you. Especially where the advice is usually that your life is over so try taking up knitting.

On the whole, the condition remains a mystery. We don’t what causes it but theories suggest its stress related. We don’t know how to treat it because for a long time it was considered psychosomatic, or ‘all in your head’, and many medical professionals still take this approach – hoping antidepressants magically make it go away and pushing for patients to be locked in psych wards (yes, this really happened to me).

Recent studies (aka the few without falsified data), show a link between fibro and oestrogen.

Being trans, the hormonal factor was hugely interesting and my psychologist showed me evidence that testosterone gel has been used as effective treatment for fibro, even in cis women.

I am not currently on gel, but will be switching. The intramuscular injections are painful and cause flare ups that leave me bedridden with pain, fatigue and migraines. But finding I had been pursuing treatment before I even had a diagnosis was funny if nothing else!

But this isn’t all that positive. Having fibromyalgia may mean complications for top surgery – after all, I am on much stronger painkillers already than what they give you in recovery. Given my tolerance and base pain levels, I may require morphine and a much higher amount of anaesthetic too. That’s already dangerous. Add in that my body is a drama queen that can’t heal for shit and sir, we’ve got a problem.

I’m not sure how exactly this will resolve; whether testosterone will eventually cure me or make me worse, but as no one looks at transgender patients in regards to disability and chronic illness, we are going to have to find out the hard way!

On topic: I can’t currently afford a wheelchair but need the independence to make long trips to the gender clinic alone so if you are able to donate anything towards that it would be a huge help!

3 ways joining my local library changed my life

In the internet age, libraries are an often overlooked resource. And as someone who doesn’t get out much, from a small town on a tiny island, I didn’t think they had anything to offer me.

Oh, was I wrong!

1 . Audiobooks

This is definitely the one that made the biggest impact! Why waste money on Audible and support the mega-corporation that is Amazon, when you can find most audiobooks free from your library?

You will find that just about every library has an app you can use completely for free with an access code that gives you thousands of audiobooks (and ebooks) for free.

The one I use is BorrowBox.

It is simple and easy to use, and looks good too. This way I can read on the go without it costing me a penny! And as a chronically ill student, I certainly couldn’t afford to audiobooks otherwise. It is a life-saver on those days when brain fog leaves me unable to read words on a page (and relaxing too!).

I have read My Purple Scented Novel by Ian McEwan and Tomorrow Will Be Different: Love, Loss, and the Fight for Trans Equality by Sarah McBride this way.

2 . Graphic Novels

I have been dying to read more graphic novels for years, but I simply could not afford to. Easily upwards of £15 buying graphic novels just was not an option for me, so I was elated to find the library’s selection was actually decent, especially when it comes to the Young Adult genre.

I had previously been waiting for my friend to let me borrow her copy of Heartstopper by Alice Oseman, only to find both volumes in the library on my last visit. They had been tagged with cute little rainbow stickers during pride so it would be easy for queer teens to pick out books that would reflect their experiences.

Alice Oseman is probably the author recommended to me the most at the moment, and from what I have heard Heartstopper: Vol 2 is even better than Vol 1; Or rather the story as a whole feels better because of it.

3 . Community

Above all else, I have found my local library to be a refuge. Whenever I need somewhere safe to go, the library is there. It is free, accessible, friendly, and there is wifi. The staff (who are mostly volunteers) are patient and understanding of disabled people, and perhaps that is from reading their own books, as they have a large variety of books on disabilities and mental health for all ages. There was even a graphic novel about chronic pain!

They have areas for small children to play, regular events for them, and a quiet area just for teens that may as well be my second home.
It used to be home to what I would confidently claim was the comfiest sofa in the world – although knowing the Isle of Wight someone probably broke in and had sex on it..

Their collection of LGBTQ books could be better, but it is still more than I expected. Given they have posters for LGBT groups and mental health charities up, I’d say it is the closest I have found to an alcohol free gay-friendly space – and we don’t even have a gay bar!

I will leave you with this:
I hope this encourages you to explore your local library and discover what treasures it holds. I am proud of my local library, I hope you are too.

A Little Bit About Me

Let’s start simple shall we.

My name is Dan. I am 19. And I am from the Isle of Wight – or rather, the Isle of Shite. I don’t mind telling you that because those ferry prices are truly criminal; If someone comes to murder me, they’ve earned it.

In the simplest terms possible I would say I am trans and bi..
in more complicated terms I’d say I am afab non-binary who wants to be identified as masc, with he him pronouns, while identifying as more femme or masc depending on the gender I am most attracted to at the time.
I’d describe my sexuality as quoiromantic, as I cannot distinguish between platonic and romantic attraction, and really do not know how I would identify sexually as I simply want my partner to feel good no matter what, even though physically and emotionally the rest of the time I am numb as they come.
If you care enough to try and figure out what the fuck that is, I applaud you. Though it is a futile, pointless exercise and a thankless one at that.

Doctors hate me. They have no fucking clue what is wrong with me or what to do with me. I was diagnosed with fibromyalgia last year and have something called PANS or PANDAS – paediatric acute-onset neuropathy syndrome or paediatric autoimmune neuropsychiatric disorder associated with strep – which basically means that ear infection didn’t just cause me to lose a significant amount of my hearing, it fucked me up REAL GOOD.
Oh, its just a little ear infection. Nothing serious – you’ll be fine!” WRONG.

This has essentially worked out to mean I have been some kind of activist all my life.

I have started this blog as a way to keep my brain muscles going since I got too ill to continue with university.. and bitch got opinions.
I might review books and film & tv, or go on huge rants about politics – anything! God knows I need some kind of outlet for these things as I have no one to talk to.

I hope this was at least somewhat coherent. Brain fog is brutal.

Signed,
D.