Chronically Unnormal

Chronically Unnormal: My life with invisible disabilities Part 3

2012-01-24T14:36:00.000-08:00

Link to my blog part 3 please take a look
http://www.youtube.com/watch?v=5Kl4y-__sBw&feature=g-upl&context=G25112aeAUAAAAAAAAAA

Spartacus stories

2012-01-16T14:33:00.000-08:00

These are my #spartacusstories videos I hope it helps the #spartacusreport
http://www.youtube.com/watch?v=I3ddjQwkFzM&feature=g-upl&context=G20eaeabAUAAAAAAABAA
http://www.youtube.com/watch?v=8sh6av_Z3HY&feature=g-upl&context=G2fce37aAUAAAAAAAAAA

Chronically Unnormal: My life with invisible disabilities Part 2

2012-01-16T10:40:00.000-08:00

I've completed a second Vlog. Click if you would like to watch http://www.youtube.com/watch?v=itoMBPUbvbw&feature=g-upl&context=G2fce37aAUAAAAAAAAAA

Chronically Unnormal: My life with invisible disabilities video blog

2011-12-19T10:44:00.000-08:00

I’ve started filming a vlog as my dyslexia makes writingthis blog hard work. I hope this will help me contact others and help me feel less lonely, please take a look http://www.youtube.com/watch?v=q2jLa5GcALk&feature=g-upl&context=G2fce37aAUAAAAAAAAAA

Chroncially Unnormal How things change and stay the same

2011-10-27T13:25:00.001-07:00

Chroncially Unnormal How things change and stay the same

I’ve been in contestant agony for 10 years now. The pain is worse than it as ever been by a long way these last 3-4 months. Right now I’m more highly medicated then ever but as before though they still don’t touch the pain. I hate to admit but the sound of me screaming has become a quite common recently. Even just writing that sentence is very hard. I always thought I was being honest when I was writing these little blogs but now I realise that I haven’t. I have not made it clear now truly terrible and all-consuming my pain is. I spend my life hiding the pain under the surface or behind closed doors. I understand that the people who care about me wouldn’t like the fact I’m, well, lying to them but when my pain is bad it is frightening and upsetting and I can’t stand upsetting people. With my parents it's different as I obviously can’t hide it from them as I live with them and they’re my carers and even if I try to they know all the signs anyway. I know that it kills them to know they can’t take away my pain which I think is stupid. They know I feel terrible about upsetting them which they think is stupid. So we have this whole circle of stupidity going on.

I’ve always refused to moan about the way I am. I’ve found the best way for me to deal with chronic pain is to concentrate on other things, my studies, my pets and cooking as examples. Moaning about life I find just makes life more miserable and with all the things I could find moan about I think I’d still be going at the end of time. This blog feels like a moan to me but I’ve decided that if it is going the be worth anything to people who may be in a position like mine I need to actually be honest rather than just saying I’m going to be.

I've also developed postural hypotension I've got very low blood pressure which drops suddenly when I stand up. I go dizzy, then blind, sometimes deaf and on occasion pass out. It's due to my hypermobility the collagen in my veins and arteries isn't strong enough to pump the blood to my brain. Another symptom hypermobility I have which I haven’t mentioned before is that it causes irritable bowel as collagen is also found in the intestines. It was one of the main reasons I was absent during primary school and it’s not something you can or want to explain to other young children. I think most of them thought I was skiving but at least the teachers new why I was off.

Recently I’ve realised how completely isolated I'd become. I missed some really important years of my life. I guess it has truly hit me now as I finish my degree in October. It’s taken 6 years and has been the most important part of my life. I guess I have been using it to hide the other things I have been missing like any kind of description of a social life.

I have something to look forward to though as I’ve been given an unconditional place to do an MSc in Conservation Biology with Zoo Studies. It’s part-time but it still means I have to attend 3 hours of classes a week. That may not sound like a lot but at the moment I barely leave the house and I’m worried that my pain isn’t going to settle down before I start in January. I am really excited about it anyway.

Chronically Unnormal: 21 and stuck

2011-10-27T13:24:00.001-07:00

Chronically Unnormal: 21 and stuck

I’m a ghost, that’s what it’s like I’ve decided. Life changes around me, I’m left standing still. I enjoy being alone and I’m content with my own company. I can solve the world’s problems in my head. I am happy that isn’t a lie but how long can I truly go on like this? I’m lonely I think, I must finally be getting on my own nerves (oh the irony). At the moment I have my studies but I have 2 years left, then what? I don’t know. Stuck that’s the word. I am stuck. It’s like being back in primary school with a blank page in front of me after being told to write a story.

Every time I wasn’t in school I missed something, friends made new friends while others drifted apart, it never made any sense to me but then again I’ve known my two closest friends nearly all my life. When I turned up the first day of college everything was different and I was in so much pain that all my energy was taken up trying to cope with just being there and keeping my happy face on, never mind getting to know new people and catching up others or dealing with someone treating me like dirt. I became quiet which definitely isn’t me. I made the decision to quit collage in a heartbeat, it wasn’t really a decision I just couldn’t carry on, but I was devastated. I felt like I’d failed even though that’s stupid but I’d never given up before. I found the OU very soon after which I’m very thankful for. I love studying biology. This degree is hard work and a struggle most of the time but I don’t know what I would have done without it.

I’ve just had the official that’s it from the health service. There’s nothing left to do - we’ve tried everything and the maybe one day there will be a treatment that will help. They offer me pain management which is funny because didn’t the pain management team tell me there wasn’t anything they could offer? But I’ll go - like I always do to see if they’ve come up with anything new.

I started this story on a much lighter note and I’m cringing about what I’ve written in the last couple of chapters but there was no point writing any of it if I was going to pretend. I really don’t like to moan and even though I’m stuck I don’t want to be anyone else. Past all the pain this ending is true…

Once upon a time there was a girl named Natalie, if anything could be said about her it was that she definitely wasn’t normal and she was happy with that.

I want to say thank you to my mum even though she’ll say there’s nothing to say thank you for. She has always pushed to get me seen by the right people. If it hadn’t been for her I still probably have any clue what’s wrong with me. She’s always there for me. Thank you to my dad for trying (badly) to make me laugh even though he’s a wuss and nearly passed out when I had the injection for the bone scan.

Chronically Unnormal: This is it

2011-10-27T13:23:00.001-07:00

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.

Chronically Unnormal: The beginning of the beginning of... what?

2011-10-27T13:22:00.001-07:00

Chronically Unnormal: The beginning of the beginning of... what?

First year of secondary school was a particularly happy time for Natalie, life was good she had grown out of her asthma (no more seal impressions). No one had realised that she was dyslexic but the teachers didn’t treat her like a simpleton. Good friends, happy days.

Then disaster, a new foe arose to challenge asthma for the title of most annoying aliment. This foe was lower back pain well not quite more like mid back pain. This stumped Natalie doctor’s as they could find no reason for her nemesis. After a couple of weeks in hospital the evil ones plan was still not discovered so the consultant gave Natalie’s parents the old excuse it was all in her head and she was making it up because she didn’t want to go to school. Well this was all news to Natalie as she is a geek and will readily admit to adoring secondary school.

I did love secondary school I finally got to do what I’m good at - science. Science has always been a big part of my life, even extending to a love of science fiction but biology is what I enjoy the most and I have quite the menagerie at home 2 dogs, 2 chinchillas and 2 bearded dragons.

Natalie got into school as often as she could but her clumsiness didn’t help matters. On the first day she managed to get back she had gym. Everything was fine until the teacher decided it was a good idea to tell the class that there had never been a single accident in the hall. Well most people know that saying something like that is a bad idea and well it’s not often that people get to say that they were the first ever to do something. So Natalie’s body decided that it was going to be first and with one step off a bench her ankle broke.

Things carried on in this fashion, the story that Natalie’s friends are most fond of is the one with the Christmas carol. The Christmas holidays filled with noise, cold and the need to wander around the shops for hours on end. All these things decided to collide. Natalie was walking around town with friends at the weekend in the manner which is normal for teenagers when entering a department store to escape the cold, one of the twins shut the large heavy glass doors on her fingers. This isn’t very odd for Natalie but the cry she gave out was the exact pitch, tune and harmony with the Christmas carol (more of a hymn really) playing inside.

Throughout her school years one thing remains the same, Natalie’s unrivalled absentee record. Thankfully by the age of 14 her foe was given a name (a name which I cannot spell for love nor money) and its name was Scheuermann’s Disease. She was subsequently diagnosed with hypermobility syndrome and scoliosis in the years that followed…

I guess I should start the real story, the part my friends wanted me to tell you about. I have tried many times to write this and found that I was having great difficultly. Just the idea of writing this down terrifies me. I struggle with my feelings - just explaining them is hard never mind writing them down. You may have noticed that I like to keep things light and impersonal. I really didn’t like primary school, may have even hated it but I didn’t say that in my story except for the wee dig about my dyslexia. But I realise that if writing this is going to do me any good I have to actually have to try to be honest with myself and maybe even moan a little.

From the age of 14 onwards I have been shoved from pillar to post. I have been on hundreds of different kinds on medications from the mundane to the horse tranquillisers, been to at least 7 different hospitals in 3 counties. It all started with a believed bout of shingles that my doctor failed to treat and leads me to where I am now.

The reason I am the way I am is due to the combination of disorders I suffer from. The Scheuermann’s Disease is a wedging of the spine which in my case was caused by half of my disc dying and the other over compensate becoming larger giving me a rounded back. In most cases Scheuermann’s Disease only affects teenagers and the pain subsides when they stop growing. As I have hypermobility my spine did not have the stability to cope with the wedging so my spine continued to change and developed into a scoliosis this in turn caused my neck and lower back to corkscrew and some vertebrae to become misaligned. These physical changes cause severe chronic pain which cannot be controlled by medication.

Medications and me have never got on anyway .I’m lucky that I don’t tend to have side effects but unlucky as they usually don’t work and even if they do they only work for a couple of weeks. I have had many kinds of treatment the standard stuff like physiotherapy and others including two kinds of acupuncture, TENS machines and an epidural in my spine, these don’t work and in some cases made me worse.

As always my body is determined to be as unnormal as possible.

Chronically Unnormal: The Primary School Years

2011-10-27T13:21:00.002-07:00

Chronically Unnormal: The Primary School Years

Unfortunately I have to have a break in this story, I don’t remember much about primary school except the huge feeling of disappointment and well writing in third person is tiring.

One of my first memories was when I was in Mrs Lomax’s class, this is when I first realised that I had problems reading and writing. I remember sitting at the front desk with the teacher and a book about witches being placed in front of me. I knew what the words in the book said but I couldn’t say them out loud. I struggled on until the book was taken off me and replaced by a book about Chip and Biff.

Now I know that I’m dyslexic but I think my teachers just thought I was thick, you should have seen their faces when I got my SATs results.

Anyway that rant over with I’ll get back to the story.

During this time the first sign of Natalie’s future problems began to show. She was always the tallest in her class and one day she would grow to be 6’2. Whereas up until now this had only caused problems for her poor mother who had to constantly buy her clothes as she kept growing out of her old ones, it was now causing problems for her bones. Both of her knees dislocated though the right one was worse off. The doctors told her parents that she was growing too fast for her joints to keep up…

I only remember two things from this time, seeing the x-rays at the hospital and being on my crutches hobbling as fast as I could to try and catch up with the rest of my class. The words ‘knees don’t fail me now’ come to mind but I’m misquoting!

Sometime passed until the next incident, her knees caught up with the rest of her and she still barked like a seal but that couldn’t be helped. As I have said before, Natalie was tall she never looked her age, so some may excuse a stressed dinner lady sending her out of the school gates to collect a wayward action figure.

Unluckily after retrieving said escapee, a ‘helpful’ child closed the gates on Natalie’s fingers. The bones were crushed, not broken; this may have been the first real sign of her hypermobility (well actually the whole knee incident was probably the first sign but I’ve only just noticed).

Natalie fell out of bed once, most people manage to stay in bed but those that do fall out usually just end up with a bruise but not in Natalie’s case, she ended up with concussion. Well this is more understandable when you discover that she slept in the top bunk of a bunk bed and not only did she land head first but also on top of a pile of her brother’s toy cars.

Her poor fingers took another beating although this time it was entirely her fault well hers and child locks. Car doors and children don’t mix; never mind those children prone to accidents. There was a finger-car door sandwich which was held together by a child lock. Her fingers were locked inside the car while the rest of her was outside…

You may have noticed a pattern developing, I’m a klutz I know but it’s only partially my fault. I think now would be an appropriate point to explain hypermobility syndrome (HMS) for those who aren’t familiar with it. I’m a bendy bod all my joints are hypermobile, which is always impressive at parties but also means I’m not in complete control of my limbs. The reason for this is that the cartilage in my joints is the wrong sort, it’s too flexible. All my friends and family have amusing stories to tell about me falling, breaking bones, getting parts of me trapped in things, dropping things and being stood on by others.

My uncle will tell you that whenever he walked me home from school I fell down, every single time! I was black and blue which is another hypermobility syndrome symptom, bruising easily. I’ve spent most of my life looking like I’ve been beaten up. My mum always thought that social services would come and take me away.

There is another story about a glass door, my hand, one twin and a Christmas Carol which I won’t tell here the twins or anyone who was there will but if you ask nicely I’ll write it down later.

Things never went smooth for Natalie locked inside in summer during the summer due to asthma/barking, breaking her bones in her right foot by falling off a pair of platform flip-flops and seeing a physio because she’d torn either her ligaments or her tendons.

It would be impossible and extremely dull to list all the things that happened to Natalie during this time, all there is to say is that when she finished primary school it was a relief.

Life with chronic pain… oh good god what a depressing title… erm how about Chronically Unnormal the life of me

2011-10-27T13:21:00.000-07:00

Hi this blog of mine was originally posted on facebook but I've decided with some urging to also post I here. Thanks for your interest x

Life with chronic pain… oh good god what a depressing title… erm how about Chronically Unnormal the life of me

Hi my name is Natalie, for those of you who don't know me I am disabled and in chronic pain, some of my friends thought it would be a good idea to write down my prospective on life to help people with in the same position.

Well I don’t know if they're right and I know my writing skills aren’t up to much, I’m dyslexic and all that but here goes.

I guess this is the story of my life, so I should begin like this…

Once upon a time there was a girl named Natalie, if anything could be said about her it was that she definitely wasn’t normal.

To begin with she was a big baby, really long with funny knees! At first she didn’t have any problems, she was happy living next door to her best friend. Her only problem came at the age of 3¾ when the thing arrived, her baby brother!

Natalie wanted a sister and no amount of coaxing from her mother could convince her that a baby brother was a good thing. So when Natalie came to see her new sibling for the first time she was shocked to find that when she saw her mother changing the baby ('Helen' as Natalie named her ‘sister’) had something no little girl should have.

“Why has Helen got one of those?” She exclaimed, “That will have to be gone before she can come home! Get the doctor to take it away!”

Later this story will be repeated at great length to embarrass ‘Helen’ but fortunately or unfortunately based on who you’re asking, Natalie loved her little brother even though she never forgave him for having that extra part!

The family moved to Bolton and although she no longer lived next door to her friend, they saw each other often, especially during the winter as when they were young it was said “If it’s snowing in Runcorn, there is a blizzard in Bolton.”

As time passed Natalie’s only problem was asthma which caused her to bark like a seal and to this day she blames growing up under the chlorine clouds in Runcorn for her rather accurate animal impressions.

Anyway as life continued Natalie quickly discovered that when something happens to her it doesn't happen by halves.