Why I love R.

I have been reading some scary articles. A friend posted an article about a woman with similar symptoms to me who ended up with a rare cancerous tumour.

In a panic, I messaged my best friend and asked her if I was being totally paranoid.

She replied with this.

Me: Also true, I just get scared that I will have my treatment revoked like they tried to do with my promazine, and I know it’s cowardly considering what others are going through but I’m terrified of losing my body and being in pain all the time. I’ve already had that happen once with my back and I don’t want it again. I love exercise and being fit.

Her: No-one will let that happen. Your mum will fight, your dad will fight, your sister will fight and I will fight if you get too tired. No one will take your youth, independence or energy ever. We won’t let them, ever. It’s your human right.

They won’t take it from you, or they’ll have an army of furious people who won’t back down. I’ll use all my skills and contacts and the world will know if you get denied treatment, because that is not on. If you are diagnosed with an illness and put in a box that is deemed beyond help, so help them.

I love you. Never challenge a love for someone. You will lose. End of.

 

And that, my friends, is why R is one of my best friends ever. ❤

Slight update again.

So I was brave, told the fourteen and fifteen year old parts of me that I would handle it, and I called the place that will do my scan and explained that I might take longer to be scanned, and that I would need a female doctor to scan me. That all went fine- progress! My younger parts felt really pleased with me.

TW: Pain and panic and hell in my own body.

Sorry I’ve been AWOL. I was doing really well.

I’ve been working at the dog kennels my auntie has recently bought, I’ve been busy with my best friend’s hen do, and living life and having fun. I feel like I’ve been doing so well and I’m so pleased that I have been managing so well.

I planned, in my therapist’s words, “a fairytale hen do,” and I enjoyed it so much. R’s face lit up in childish excitement, her eyes sparkling prettily and her smile glorious, as I unveiled each surprise. I’ve been her friend since we were eleven and I really wanted to show her bow much I care for her and respect her.

She had a brilliant time. We all did- me, my sister and her. My sister and I came home, we started unpacking, thinking about doing washing and sorting the house out for when my grandmother and uncle came to visit us the next day, and

WHAM.

I was suddenly crippled by pain. I curled up on my bed, gasping. It felt like the chestburster from Alien was clawing its way through my skin out of my womb. Pretty sure at this point it was a body memory, I pulled myself higher up the bed and willed it to go away.

It got worse.

My sister came in to ask my advice over something and was met with the sight of me unable to move, shaking and wide-eyed. She decided then and there we should phone the ambulance, but I didn’t want to. She decided on the emergency doctor instead.

Three hours later (yes, three hours of me being unable to move due to pain, screaming at times, crying and blacking out) the paramedics finally arrived. They were, as usual, amazing, and decided it was off to hospital with me. They got me into a chair in the ambulance and I told them what had been going on with my symptoms, and also managed to disclose what my ex did to me, and the miscarriage. The paramedic, a male one too, took me seriously, commended me on my bravery, and gave me gas and air to take so I would be ok and I would relax.

I got to A and E (ER for you American readers) and I was delivered to the Triage area and waited there. I was seen after about twenty minutes by a very grumpy nurse, who didn’t let me explain very much about why I was there, didn’t take my pain seriously and gave me a handful of painkillers to take.

The ordeal really began then. After two and a half hours of waiting, where I was denied more painkillers, not told whether or not I was allowed to eat or drink so I couldn’t… I finally saw a harassed male doctor who informed me I had pelvic pain which was, apparently, common in young women (bullshit, it really isn’t that common), and apparently it would go by itself. Here, take some painkillers, stop over-exaggerating, and go the fuck home.

I was sent home in pain.

I’m still in pain.

This whole experience has taught me something: In the UK, the NHS is fucked. We have doctors who won’t help because they have to tick boxes and avoid expense. We have a mental health service with too many psychiatrists and not enough psychologists. We have paramedics who should be paid what a consultant is paid, because I have quite frankly not met many consultants who knew what they were doing.

In the meantime?

I am living each day exhausted, hurt, and upset. I am trying hard to reassure fourteen-year-old me and fifteen-year-old me that we are ok and we won’t die. I have to ring up tomorrow and talk to the people who may have to do, along with a normal ultrasound scan, a trans-vaginal one, and explain why the appointment may take longer than they expect. I am left picking up the pieces of a broken system which does not, on the whole and excluding a few professionals working within, care at all about me or why I am in pain.

Endometriosis has been mentioned, and I am wondering whether the person who gave me her opinion could ne right.

I am anxious, upset, frightened and craving to have J’s hand in mine this Sunday. I’m praying it will all go well, and I will have a solution to the problem soon.

I’ve lived in pain for so long- my back, before that horrific periods, now this. I can’t go on in pain all my life. I don’t have much left if I lose my body.