You have to fight for your right (to be diagnosed) : part one

Twice I have been in a situation where I have had to convince doctors that I have real physical pain, and that it's not just psychological. I'm not denying that your mental health can affect your physical health, but sometimes there really is just a physical problem that needs correcting.

When I was about 26, I started to get really awful pain in the back of both hips, along the area round about where your kidneys are. I had experienced this sort of pain before, generally in the winter, and it seemed that it was getting worse year on year. I had mostly ignored it. Applied hot water bottles to the area when necessary, took solpadeine, and tried not to exacerbate things.

In the end though, it got so bad that I had to go to the doctor, and they agreed that I should get some x-rays done. Before the x-rays, I met with a hospital doctor, who was dismissive when I tried to explain where the pain was. They basically said that there was no way I could have pain in those areas. But I had my referral and the x-rays went ahead.

Well. It was extremely satisfying to see the proof right there in red. The giant areas of inflammation, exactly where I said the pain was, that showed how my muscles were strained from my hip dyslpasia. It was also a bit shocking, as I had not realised that my condition was so bad.

After I got the proof I needed, I was handed over to a physiotherapist. She taught me specific exercises to do every day to strengthen certain muscles, and she also did some acupuncture to stimulate the muscles and ease the pain. Acupuncture is said to be painless. Well it's as painless as having giant needles stuck in your muscles can be. I also started to swim consistently, every week, something I still do now.

Getting someone to work with me on what I could do to ease my condition made such a big difference. It allowed me to manage my pain, and also allowed me to pursue new sporting activities that I previously would have avoided. I learnt to rollerskate, (I can also skate backwards!), and I took part in two 5k obstacle races. 

I would never say don't listen to a doctor. Mostly they know their stuff. But you know your own body, so don't just take what they say as doctrine either. Don't give up until you get the result that you need.

Preparing for surgery

On the 23rd May I will be having a diagnostic laparoscopy and a cystoscopy.

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 Laparoscopy is a surgery that uses a thin, lighted tube put through a cut (incision) in the belly to look at the abdominal organs or the female pelvic organs . Laparoscopy is used to find problems such as cysts, adhesions, fibroids , and infection. Tissue samples can be taken for biopsy through the tube (laparoscope).

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Cystoscopy is a procedure that allows your doctor to examine the lining of your bladder and the tube that carries urine out of your body (urethra). A hollow tube (cystoscope) equipped with a lens is inserted into your urethra and slowly advanced into your bladder.

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 I just had a rummage for any pictures to go with those descriptions, and I don't think there is actually one that I want to look at right now. Those few minutes of browsing have just scarred me. Surgical tools just look so damn horrific.

Today I had to go in for my assessment, to make sure I am a fit candidate and to avoid complications down the road.

All in all, I am still in good health, considering. My bloodwork is nice, my blood pressure remains perfect, resting pulse excellent. If it wasn't for the constant pain, I would be a truly excellent specimen. It's times like that I am grateful for all the chocolate I didn't eat, and all the exercise that I did. It's still paying dividends now.

 So all is well, and the surgery is set to go ahead. The only thing that is still freaking me out is the anesthetic. Being asleep whilst someone cuts me open is probably my deepest fear, a phobia if you will. One that I never thought I would actually face, or not until I was old and having my first hip replacement surgery.

I will do what I always do in such situations. Picture time skipping until the day after the surgery, when it's all over, and I'm telling everyone what a breeze it was, and people call me brave and give me sweets.

Young, Beautiful and Disabled - what's it all about?

I picked the title that I did because I wanted something engaging and evocative. There's something a bit forbidden about grouping those words together. They create a juxtaposition that feels slightly uncomfortable.

On the whole, one is not allowed to refer to oneself as beautiful. If you do, you are an arrogant or prideful piece of poop, that needs to be immediately ground down beneath someone's heel. There's a constant battle between those people, the haters, and the sensible ones who understand that it is an important part of your mental health to love yourself and find yourself beautiful.

What makes someone beautiful?

If you are the kind of person who offers a crying stranger a tissue, you are beautiful. If you see lost tourists forlornly clutching a map and point them in the right direction, you are beautiful. If you've ever given a token gift (their favourite sweets, a cute pair of socks etc) to a sad friend or relative, you're beautiful.

So basically, most people are beautiful. If you look at yourself and you think that you're not, either:

1: Change
2: Accept

Apply as necessary.

The aim of this blog is to explore what it means to be disabled. To live with a chronic, life-changing condition. But also for people who are going through something temporary. Something that is turning their life upside down and inside out, and they want to rant about it, talk about it, or just read something that sounds familiar to them.


If you're out there, and you identify with any part of this blog, get in touch. Share your experience. Be part of this fabulous, subversive little scene.

Hospital is the loneliest place

Between Christmas and New Year I spent 3 nights in hospital. I had gone in to see an out of hours doctor, and ended up being admitted (against my will). I had nothing with me, no pyjamas, no book, no contact lens solution. I cried.

Mum and dad were with me, and arranged for my sister to go to my flat and pick up a few things. It was weird to think of her going there without me.

I was moved into a private room, which was nice in the way of a really sterile hotel room, but I was pretty scared. I had insurance through my work, and was grateful to have it, and be out of the chaos of the shared wards. But once everyone left, and I'd finished my drip, and the nurse had given me a painful stomach injection, it was eerie.

It was surprisingly quiet, and I had a lot of thoughts and no one to talk them through with. I cried every night, sometimes for hours. Partly because of the pain, part loneliness, part fear of the future. There was still no diagnosis forthcoming.

When I was discharged, it was with mixed feelings. I wasn't any better, there was just nothing more they could do for me. My pain had levelled off, and I had been scanned, x-rayed, MRI'd and generally prodded about.

Back to the specialists I must go.

The very worst thing I've had done....so far.

I have seen a fair few specialists. Doctors at the very top of their field. Alas, they were stumped when it came to figuring out what was wrong with me. They took blood and other samples over and over. I got used to just handing over my arm to be jabbed. 

Finally, it was decided that something a bit more extreme had to be tried. I'd had ultrasounds, an x-ray, and an MRI of my abdomen, and now they had to try something else.  

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A gastroscopy is a procedure where a thin, flexible tube called an endoscope is used to look inside the oesophagus (gullet), stomach and first part of the small intestine (duodenum). It's also sometimes referred to as an upper gastrointestinal endoscopy. The endoscope has a light and a camera at one end.

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They offered me some sedation, but it wasn't proper put you to sleep stuff, it would just make me feel out of it, so I declined. A banana tasting spray was applied to my throat to numb it, and then I had to lie down on my side.

A nurse held my hand as the tube was fed down inside me.

You have to fast beforehand because you gag the entire time, and if there was anything in your stomach it would come up and risk entering your wind-pipe. So you feel as if you're being sick over and over but nothing is coming up.

Mercifully it was only about a 3 minute procedure, but the memory can still make me gag even now.

The worst thing? There were no useful results. My insides were perfect. Still no answer as to my pain, which was getting worse all the time.

Right in the Balls

What I have noticed (and many others before me) is that life is very unfair. It doesn't hesitate to kick you in whatever sensitive areas you might have, and it will kick you repeatedly. All you can do, is stagger back to your feet, and try to brace against the next blow.

So there I am at 29. My body is something like a well-oiled machine. I've been working it hard, pushing on against arthritis, shouting it down with, "You shall not pass" gusto. I had decided that if I ate well, and exercised enough, I would keep everything ticking over indefinitely.

Mostly I was happy with my body. I was miffed at the grinding and clicking and the aches and pains, and the limping, but I wore cute dresses, and I was a UK size 10, which I considered to be the ideal size, and I had great hair.

And then I started to get these other weird pains. Stomach pains.

I cut down on the gluten, ate more fruit, and thought that would be the end of it. But the pains didn't go away. So quite a while later, I went to see a specialist. He decided it was probably just constipation, just me some stuff, and sent me on my way.

The pains started to go away a bit. I ate less and less. I exercised more. I thought no more about it.

At the end of November 2015, I collapsed at work and was taken to hospital in an ambulance. And it just got worse from there.