Can you imagine your world turning upside down, everything you've ever known changing, feeling like you've lost all control, feeling so lonely, that it feels like you're the only person in the world and ever will be?.. That's what being diagnosed with Ataxia feels like.

I said I'd not write a post on FA. But, it turns out, I am. I may sound over-dramatic in places, but I'm not. I didn't take diagnosis well I don't think. Not in a obvious, over emotional mess, kind of way. As in, I turned inwards and didn't want to discuss it with people. It sounds like a cliche, but I guess I couldn't accept it.

Something had always been not quite right and apparently, so my family say, I always ran like a fairy!? Not that I understand that really, as Ataxians are not elegant people, whatsoever. But I ran weird, couldn't walk in a straight line or ever stand on one leg. However, I still did dancing, believe it or not. And for someone with not much balance, I wasn't too bad! Everyone just thought I was clumsy and lazy, after all, who'd want to think that a relation of theirs had some medical issue? It just didn't cross anyone's mind. 

Looking back since being diagnosed, I remember certain things I found difficult but I think, as a child you tend to just get on with it and push things to the back of your mind without realizing. I was always rubbish at sports, in P.E at school I always used to try and get out of doing it. I come from quite a sporty family, so it didn't make sense. I longed to be able to play tennis. I was rubbish, most of the time I couldn't even hit the ball. I remember once, I was walking to school with friends, I was about 11-12 years old and I was walking in front, which I didn't like to do even pre-diagnosis. My friend shouted from behind me "why can't you walk in a straight line, Laura!?" I turned around and replied, "I don't know", because I didn't. Another time, I must have been a similar age, we were doing a play sort of thing at school and we were dancing to "One night in Bangkok- Murray Head". As the intro continues to play music for a couple of minutes, we had to stand dead still, feet together, head down and lights were off. If you don't have Ataxia, just imagine being drunk and trying to do it. If you do have Ataxia, i'm sure you can appreciate how hard that was. Nightmare! 

I could go on about incidents that happened in my childhood, that were obvious signs that something was wrong, but what would the point in that be!? I finally got my diagnoses, and the fact that I didn't get it until 15 years old was a blessing. As I didn't know anything was wrong, I carried on normally. 

I'm not sure when we would've found out the problem, if it wasn't for me noticing my scoliosis. As a normal 12-13 year old girl does, I was checking myself out in the mirror and noticed my hips we're odd. My left hip was completely normal looking but my right one was curved in more. I went to show my mum and ask her. I remember her not being sure either so we booked a doctors appointment. At the time, I hadn't a clue what it could be and don't think I worried about it at all. 

The doctor examined my back and then told me I have Scoliosis-Curvature of the spine, I was 13 years old. He sent me off for some x-rays and then I had an appointment with a consultant at Southampton Hospital. Them waiting rooms were always so busy and almost every appointment we had there, was late. We saw a doctor, specializing in Scoliosis. He gave me the option of a back brace. He didn't think the operation was necessary, as he told me my curve would not progress after I stopped growing. 

I got fitted for the awful, hideous, uncomfortable, contraption!  It was a huge, white, plastic brace, the size of my torso. It had foam padding inside for 'comfort'. I had to wear it 23 hours a day. I wore it for about 6 months in total and definitely not everyday. Maybe that was the reason for me having to have the operation But I don't care. It was an evil thing to wear, in summer most. 

In between these hospital visits, my mum had to began asking about my walking and we kept getting the same answer, "That will be because of the Scoliosis". Until one day, my main consultant noticed the way my feet shuffled when I turned around in a circle. Straight away he said "That's not down to scoliosis". Therefore, he referred me to a Pediatrician at Poole Hospital. The appointment was quite a few months down the line. I felt quite excited to be honest, as my walking and now my coordination began to progress, I didn't need to feel like I was crazy anymore. There was something not quite right and it was getting sorted, so I thought. 

I had to visit the Pediatrician a few times, so that he could carry out so many tests. These tests looked like the easiest things in the world. But for an Ataxian, kind of near impossible. Some things I had to do were; follow his finger with my eyes, touch my nose, then his finger, walk heel to toe, my reflexes were tested, etc. Including an M.R.I scan, which I did not like, one bit! One time I had an appointment and I remember, clear as day, the Pediatrician mentioned my speech being slightly slurred/slow, I was shocked and my mum appeared to be as well. 

This must have been going on for about a year and before that, doctors told us for a year that my back was causing all of my issues. I had an appointment to go for a blood test, little did I know, these results would change my life forever. 

It was about four months after the blood test that we received a letter to inform us that I had an appointment in Southampton Hospital, with a Neurologist. I had no idea what was coming, absolutely none. My mum may have had idea, but the diagnoses we got would have never even crossed her thoughts. Not long after we got the appointment I said to my mum, something along the lines of "When they've figured out what's wrong with me, I will be able to have an operation, won't I, to make me better!?" 15 year olds are so naive. 

November 12th 2007. My mum, my Auntie and I went off to Southampton. I don't have a single memory from that morning. My first memory was being called into a private side room with a neurologist and a nurse. The doctor began, he explained that I had a progressive, genetic, condition called Friedreich's Ataxia. It's incurable and there is no treatment, only for symptoms. These were just words to me, they didn't mean anything. That was up until he said the word wheelchair. "Most patients are wheelchair bound within 10 years of diagnosis." WHAT!? A wheelchair!? I went from a normal, average 15 year old to a disabled person in nano seconds. It was so quiet in that room that I actually heard my heartbeat through my chest, it felt like it wanted to jump out. My whole mind clouded over. What actually just happened!? I don't think I listened much in that room, I just heard the bits I wanted to hear..Not many at that point. 

We had to go down to the Heart Department, as one of the symptoms of FA can be heart complications, such as; heart thickening, irregular heartbeat etc. Okay, so now, I'm a disabled 15 year old girl with heart problems!? I got asked to take my top and bra off. So now, I also had no dignity. My heart is kind of fine and stayed the same for 6 years, as far as we know. 

That was it. This huge bomb shell had just been dropped on my life and all I could do was deal with it. Something I had symptoms for, for years, had just been pushed upon me in a matter of minutes. It felt like someone up in the sky said "This girl hasn't had enough shit in her life, lets give her some more to deal with." Yeah sure, I had plenty of doctors, family, friends, support from everyone. I knew it too. It just wasn't enough. I still had to deal with this myself, as it is mine to deal with. 

The same day was my best friends birthday. I didn't want to tell her the news from the hospital, but obviously, I couldn't keep it from her. As we were in the car on the way home, I texted my friends to tell them. I can't for the life of me remember what I said in that text, a brief definition of FA, I guess. Before hand, I had already arranged to go around my best friends house after I had been to the hospital. My mum and I both went, My friends mum and my mum had a cup of tea in the kitchen and me and my friend went to her bedroom. It was her 15th birthday and I wanted to be happy and up-beat for her, so bad. At first I did well, we talked about things I missed at school that day and celebrated her birthday.My mum then called up to me to say she was going and if I wanted to stay, my friends mum would give me a lift home later on. I agreed to stay and I tried to keep a brave face on. I didn't succeed for much longer, I broke down and just couldn't stop the tears flowing. After being really apologetic, I said I had to go home.

I let myself into my house, sat on my bed, and cried my little heart out.

It felt like I had hit rock bottom. It felt like hope, faith, happiness and joy had left me, and all I was left with was fear, sadness, hopelessness and despair. I don't remember my exact emotions, coping mechanisms, my moods or attitude. But I imagine, I became the devil child for a bit. Three main things got me through; family, friends and other Ataxians. Most of all, others with the same condition. A few months passed before I spoke about it properly but one day I decided that I wanted to talk with other 'sufferers'. My social worker provided me with info of a chat-room where I could speak with others. From then on, I made friends. I speak to these people nearly everyday. They are not substitutes for my friends, because I have them. But they are a big part of my life. These people understand EXACTLY how I feel, what I think etc. And to go from feeling so lonely, like you're the only person in the world to speaking with a load of people who 100% know how you feel, is such an amazing feeling. 

Everyone has their own, private battle with FA. But really, we're all fighting the same thing. Some resent it, become bitter and in denial about it. Others fully accept it and move on with their lives, not without it, but with it. It's a choice. There's always light, at the end of every tunnel. 

Hi. My names Laura, i'm 20 years old, 21 in October. I have a genetic, progressive, condition..Friedreich's Ataxia. It's a bitch and causes all sorts of problems, for example; loss of balance, coordination, heart trouble, scoliosis, vision/hearing loss, feet/hand deformities, shorter life expectancy, fatigue. The list could go on with little symptoms that add up to a big problem. For the majority of people with FA, they are in a wheelchair. This isn't the best thing, as you can imagine. But from my point of view, being a wheelchair user is the least of my worries.

A lot of people with this disability have scoliosis as one of the symptoms. This is curvature of the spine. It can create problems such as; twisting your body, crushing lugs, causing major discomfort and generally making your torso look completely out of proportion. An operation is available to correct this, by inserting two metal rods down each side of the spine, using screws and bolts to attach these to the spine. Your spine is then fused together and after 3-4 months the bone will start to fuse together, no longer needing the metal rods. However, as it is major surgery they like to keep the rods in there forever, unless some sort of problem arises. 

Well, 9 weeks ago today, I endured this delightful operation. I'm not going to lie, i'm trying to be as honest as I can here. It was, without a doubt, the worst experience of my life. But, I got through it, all the pain, tears, heartache, loneliness and frustration. I am also a wuss with pain, so to look back and see what I've overcome, is probably the most empowering feeling I've ever had. 

The doctors/surgeons do not like to carry out this surgery until the curve is at least 45 degrees. I had the pleasure of having two curves, the bottom one measured 63 degrees and the top was 47 degrees. My shoulders and the top of my back were straight and matching. The bottom of my back was more noticeable. My right hip was completely deformed and curved in way more than it should, which made my ribs also twist. It caused me a lot of discomfort. The skin tissue between my hip and rib was constantly getting pinched, whenever I bent over, or turned even slightly. Therefore, in August of last year, after 4 years of being discharged from the scoliosis clinic, my mum and I went to see Dr. Dare at Southampton Hospital. I explained my situation to him and he requested for a couple of x-rays to be taken. These x-rays showed that my curve had progressed and he also informed me that he would've offered me surgery all those years ago, but as I had a different consultant back then, he didn't recommend it. I decided to accept the operation and was told the waiting list was roughly around a year.

It was all a waiting game and I had to try to not change my mind. Finally, the end of April 2013 came and I received a letter, confirming my operation was the 10th June. I don't think it sank in properly until at least four weeks before. I was terrified, but I knew it was something I had to do to live a more comfortable life. 

The morning of the operation came and I've never, ever been so nervous. I wasn't allowed to smoke, so the 30 minute car journey wasn't the best. We arrived at the Hospital for 7:30am. My mum and her partner came with me. We got called into a pre-op room and some lovely woman came in and got me all prepared. She gave me an over sized hospital gown, tight stockings and 2 wrist bands with my name on and some sort of bar code (bit odd). A bit later on the surgeon, consultant and anesthetist came in, they went through the procedure with me and made me sign a few forms. I began to cry. I realized I sort of just signed my life away. Before I had any time to feel sorry for myself, another woman and a man appeared to take me down to theater  I said my goodbye's to mum and they started wheeling my bed off. I literally remember nothing apart from going through those double doors into the operating room. It was the most daunting feeling. I briefly remember them putting two canulers in my hand and that was the last I remember of life before a metal spine!

I remember waking and being so confused. There was a clock directly in front of me which said it was 4:30pm. I went into theater just before 10am and my mum said Dr. Dare rang her at about 2:30pm to say they were nearly finished and it had been a success. Four and a half hours I was cut open for. Ew. I was drifting in and out of sleep and do not remember much. Although I do have a clear memory of turning my head to the right and seeing a spine x-ray on a computer screen. It was mine and it was straight! Awesome!

I was transferred to HDU (High Dependency Unit), this was because of FA and the strain the surgery had on my heart, they kept me on a heart monitor. I remember coming into HDU around 8:30pm and I had my own room with a free t.v. I also was not very nice to nurses. Telling then to f**k off, leave me alone, I felt like guinea pig. Probably much more. I was so happy to see my mum, although that evening is a blur and I remember nothing from then on. 

I don't remember much of being in HDU. I was on lots of morphine, I had a line into my canular and every 5 minutes I could press a button and pain relief went straight into my veins. I also had a canular in my neck where they had to give me a blood transfusion during the op. I had 2 epidural taps in my back, one at the top and one at the bottom, this made my back relatively numb. My scar is in the middle of my back and runs right the way down my spine. It stops about three inches above my tail bone. To the right of my scar, I had a drain in my back which was attached to a bag full of blood. Gross. I also had a catheter, as I couldn't move much for the first few days of recovering. 

The day after surgery, I distinctively remember it was about 11am and two Physio Therapists came round to see me. They told me they wanted me to try and stand, with their support, of course. I cried. I felt tooooo painful to try and stand! But I knew that the sooner I did it, the easier it would be. They finally persuaded me and fetched another Physio to stand in front of me to make me feel safer. They helped swing my legs around in bed so that I was sat on the edge. By this point, I was crying my eyes out. It hurt so bad! But I had to. I had a Physio on each arm, the bed at the back of my legs and a lady in front just in case I fell forward. Slowly I stood up. I don't remember the pain, however, I do remember it being excruciating and the worst pain I've ever felt in my life. I was up, screaming and crying, but I was still up. Less than 24 hours after major spinal surgery, I was doing something I was absolutely terrified of doing. See, lots of people with FA have this operation and a lot of them have said that afterwards their progression went really quick. They were unable to stand or walk. Now I can stand unaided with no trouble, I can still walk a little. Same as before the op, maybe a little worse, but it doesn't affect my life in any way.

I stayed in HDU the Monday until Thursday afternoon. I was really sick them 3 days and in the end the doctors concluded that I was allergic to Morphine, so then I had Fentanyl pain relief instead, which was equally as good. I got moved to an Orthopedic ward, which had three patients in already. They were all elderly, not very friendly and were all confused. I hated the ward, I was always so lonely. Every afternoon I had visitors though, my mum and my boyfriend (now ex) came everyday. My friends, my mums partner, my brother, my niece  my sister, my granddad and my mums best friend, all came to visit, most more than once. It was the highlight of my day, seeing people I was close with. I need to mention, the majority of the nurses and doctors were brilliant. They just couldn't seem to grasp the fact that i'm disabled so couldn't go running up and down the ward. 

I was still being sick, even off the morphine and I wasn't eating hardly. Come Friday, I felt so weak and frail, something wasn't right. My wound leaked so much that day, my bed sheets got changed four times. They took my blood pressure and temperature every 2 hours, as a routine thing. On the Friday my BP was down and my temperature was up. I was losing too much fluid from my back and couldn't put enough into my body in time. I started losing consciousness and fell under for about an hour and half. Meanwhile, they put me on a drip and my mum started worrying. They did everything they could do but I wasn't waking up. Apparently they were seconds away from hitting the panic button, then I woke up. I remember feeling instantly better, better than I felt all week in fact. 

Saturday came and my friend, her boyfriend, my boyfriend, my mums partner and my mum came to visit me. In the later afternoon, I began to feel unwell. I was being sick again and was drifting in and out of consciousness, again! Luckily, this time I was put on a drip before I fell under. I was brought back to normal and felt fine. Sunday came and I felt much, much, much better. I felt I wanted/needed to go home. I asked the nurse when she reckoned I'd be going home and she said because I'd been so sick, I may have to stay in for another week but she said the surgeon will be round tomorrow morning to tell me more.

Monday was the best day. Dr. Dare came round and asked what I was still doing here?! I told him how I'd not been well and he and his consultant read my notes, looked at my wound and asked how I felt. I explained that I felt fine now and all I wanted was to go home. I asked Dr. Dare when I could be discharged and his reply was "tomorrow!" I was so shocked. He said that they just needed an x-ray of my back before they could discharge me, which was arranged for tomorrow morning.

Tuesday morning had arrived! I waited what felt like forever, for the x-ray department to ring the ward to say a time for my x-ray. They rang about 10am and came to take me down for my x-ray about 11am. I couldn't wait because as soon as a doctor checked my x-ray and signed me off, I could go home! I got wheeled down for an x-ray in my bed. The porters left me outside the x-ray room and said someone would be along shortly. Finally a man and a woman came out of the room and called my name, that's it, I was so close to going home. 
I had to stand for the x-ray, I had something to lean on and I had my back against the x-ray board. I just couldn't stand still, my muscles had wasted away in my legs and my knee kept giving way. I got upset. So the lovely woman put on a apron, crouched down and held my waist whilst the x-ray was being taken. That woman doesn't know how grateful I was, because of her I was able to go home. I went back to the ward, began to get ready and waited for my mum and boyfriend to come. They arrived about 3pm and began to pack my cards, presents, balloons and bits up. I asked the nurse when I could leave, she turned round and said I wasn't due to leave until tomorrow. I said my surgeon said I can go today after my x-ray and whether she discharged me or not, I was going home! Finally, a doctor looked at my x-ray, said it was fine and I could go as soon as they sorted my medication out. By this time, it was around 6pm and I was so tired! The nurse came back with a bag which contained only Paracetamol. I didn't care, I just wanted to be in my own home! We left...

9 weeks on and I am so close to being recovered. My back is still very achy, but that will go in time. I can do everything I could do before. My hips are even and I have no discomfort between my rib and hip. For 5 weeks, I said everyday to my mum that I wish I never had the op. Then something changed. I stopped feeling sorry for myself eventually, the initial pain died down and I got my independence back! I'm now so glad I had the surgery and would tell anyone to go for it. Yeah the first few weeks suck, but time heals everything! :)