Chronically Unnormal: This is it

Chronically Unnormal: This is it

It all started with a bout of shingles that my doctor failed to treat. I was diagnosed with Scheuermann's Disease after the shingles had faded and I was still in pain. The diagnosis came as a relief as I could understand what was going on with my body. As well as the name I also had a cut-off point, when I stopped growing the pain would subside. This is when I started taking pain medication, I guess it must have helped in the beginning but it seems so long ago…I can’t remember.

So I went to school as much as I could. I probably missed at least half of year 9. I was being seen by a spinal surgeon in Manchester to keep an eye on the angle of my curve as surgery was not an option as it would probably make the pain worse. But the pain kept getting worse anyway, I was referred to a children’s pain clinic in Sheffield as this was the closest - over an hour and a half away.

I always wanted to thank the doctors there - well all except the one who told me my life was over and no one would ever employ me! Just what every 15 year old wants to hear! The rest of the doctors were brilliant, they tried everything they could think of. I was on morphine drips and began taking ketamine (the horse tranquilizer). The first time I was given the ketamine I had to be in hospital to be supervised. After the first dose the nurses began behaving oddly, every few minutes a head would pop around the door then disappear. This went on for about half an hour until suddenly I realise what they were doing. I started giggling, none stop this is what they were waiting for. My mum asked them if this was normal and “yeah”, she replied, “they always go a bit weird.” Thanks for the warning guys! Over the next few weeks I used to get litre bottles delivered to the house by courier - I could have made a fortune!

The last thing they tried was an epidural which at first seemed to work and I was able to sit in a straight backed chair! But later that night I was rudely awoken by my own hand hitting me in the face! I lifted my arm to look at my hand and found my elbow was swinging my lower arm back and forth. The anaesthesia had risen too high leaving me with no control of my lower arm.

This meant that the anaesthesia had to be reduced in case it continued to rise and affect my heart and lungs. This also meant it no longer blocked my pain so they gave me oramorph as well while they tried to sort my epidural. The combination did have a funny side effect, one pupil became massive and the other became the size of a pin head! - the drugged up alien look, very now!

Unfortunately none of this tinkering worked and the epidural was written off as a failure and they were now out of ideas. They kept me on the books I continued to see the physiotherapist but it was so far away and the trip was hell so by mutual agreement I was transfer to adult service back home.

During year 10 I’d reached the stage where I could no longer go to school. Luckily I had a brilliant home tutor. Most of the time I could barely think, nothing made sense, and I would get angry with myself because I was studying science and I didn’t understand anything, all there was in my head was pain. One morning, not long until my GCSE’s, I got my box of drugs and froze. Why am I taking these? I thought and I just didn’t take them.

I could think again! I could get through an entire sentence without forgetting what I was going to say. It even helped me deal with the pain, it wasn’t any better but now I could control it more. I had a few weeks before my GCSEs to go over all the work it made me so happy that I understood what I was doing.

That summer was amazing I went on holiday with my family. The heat even helped my pain. I got my results, I did better than expected. We decided that I would attend college to do my ‘A’ levels.

Bad idea - I’d forgotten was it was like to sit in a chair for an hour at a time and to have to pretend I’m alright when I’m in agony. I kept going of course, I’m incredibly stubborn and I needed my qualifications.

I was seen by the pain clinic at Hope hospital Salford. I was examined within an inch of my life, they found the tiniest heart murmur (which then had to be followed up, thanks) but after probably 9 years of seeing physiotherapists they recognized that maybe the fact I was very bendy might be a problem. They sent me to a geneticist; they thought I had Marfan’s (connective tissue disorder with characteristic skeletal, dermatological, cardiac, aortic, ocular and dural malformations) but luckily it was the benign form known as hypermobility syndrome.

I now started travelling to Leeds to see (the world renowned hypermobility specialist) Professor Bird. Who decided to have a 3 for 1 sale on diagnoses, out of the shopping cart came scoliosis, vertebrae misalignment and cork screwing of my neck and lower back. He also decided to force me to stay in hospital under the thumb of Satan’s physio. He Who Shall Not Be Named decided that, as punishment for some unknown sin, to damage my already broken down body. The closest I got to an apology from the Professor was in a review appointment of my stay and was astounded to find that I was a great deal worse he said. “Maybe it wasn’t the best course of action.”

I was periodically getting worse anyway before Darth Physio decided to get involved. I’d figured out a long time ago that I wasn’t going to get better when I stopped growing - which I had by now. I knew why now as well, it was due to the hypermobility. Other Scheuermann's Disease sufferers had the stability when they stop growing to cope with the changes in the spine but I don’t as I’m all wobbly, so the angle of the kyphosis increased and the other deformities developed.

I only managed to turn up for my biology AS exam and during my second year I wasn’t really there. One day my best friend asked me when I was coming back and I informed her that I wasn’t. I hadn’t thought about it at all until after I said the words but I knew it was true.

There was no more news either after this point. I had seen doctors all over and been on pretty much every medication you can think of. I had tried everything, 2 types of acupuncture, (which made me worse) tens machine even a giant one, (which made me worse) and hydrotherapy, (which, yes you’ve guessed it, made me worse). I think there’s a pattern forming here.

There is no way for me to explain the level pain I’m in. No one has even seen me at my worse except my family. I barely leave the house. I spend most of my time lying on my bed studying when I can concentrate. I continue to get worse throughout the day and pretty much anything else I do makes it worse standing, sitting, lying down, walking etc.

The Scheuermann's Disease no longer affects me. My pain isn’t caused by that or any of my other spinal deformities. No, that would be too normal for me. The reason I’m in so much pain is because I’ve been in so much pain for so long (which to me sounds like really bad poetry). It’s neuropathic pain my nerves have been transmitting pain impulses for so long that the receptors are always on and the nerves believe that there are constant pain impulses.

I’m hypersensitive to touch as well, I feel like a massive bruise. I produce a large amount of heat around my sides due to inflammation. My granny would warm her hands on me! It’s sad but sometimes I get heat stroke from my own body temperature and have passed out. So I really am hot stuff! Well except my feet which are like ice which is always fun, I think you can hear the screams a mile off.