I know this may be a ridiculous title for blog post but I do have something important to say about such an unsuspecting topic. For me every little dodgy raised paving stone, crack or surprise raised pavement is a potential catastrophe. I am well aware that this is not the case for most people rushing to the office on a rainy Monday morning. However, for me it all becomes worse as I get faster. This is because, due to my walking gait, I don’t clear the ground so much with each stride. As a result I am on high alert for any uneven ground as these little blips send me flying on far too many occasions.
One thing I have learnt from these ‘nice trips’ that I take (no it is not a sunshine escape to the Caribbean) is the art of recovery. If luck is on my side (not as much as I would like) then I can just do a little sprint start-Usain Bolt eat your heart out, and bring myself upright and rather than ending up a little too close to the floor. I have had a number of entertaining and massively exaggerated responses to these trips (My parents included but I know they are just worried about me). The problem is when I do take a tumble, these pavements are not very forgiving, if only they were coated in cotton wool then I wouldn’t have anything to worry about. Post trip, I would prefer to just continue walking as if nothing has happening but I remember one particular lady squealing and running after me to make sure that I was okay. If it was up to me no one would bat an eyelid but some people like to make my trips into more of a spectacle.
Another frustration of mine is the fact that to minimise my chance of a tumble, I have to spend all my time walking staring at the floor and focus sing on picking my feet up. Trust me I would much rather be looking up and around rather than at the paving stones! So all in all the dodgy pavements of central London mean I am on constant look out for my next pitfall however much I would rather be looking up at the scenery and hubbub of people, it’s just not worth the risk of black and blue knees.
I wish this was something that I could offer everyone in the office. Unfortunately for me I am unable to do a round of cuppas. Hang on, before you judge me for being lazy and selfish, this is with good reason. Our office is on two floors with the kitchen upstairs and my desk downstairs. Therefore I have a daily challenge that I take on willingly first thing every day-getting my tea from kitchen to desk. I am sure that everyone in our office knows when I have done a hot drink run as there is a trail of tea following me. This is because, carrying a full mug of tea across the office and downstairs with my poor balance is like Beatrix (“Beer trick”) trying to balance 3 pints of lager on one shoulder, 4 pints on the other shoulder and two on her head. Spillage is inevitable and anymore than one mug at a time is a recipe for a Niagara Falls of tea!
However, it’s not just the stairs that cause issues, I am always spilling drinks even on one level. So much so that I am sure my flat mate is fed up with mopping up the tea stains all over the floor up!
Despite this dilemma, I have never asked my colleagues to carry my tea for me and am determined to keep going. My mission is to one day make it to my desk without spelling a drop. Then I would be able to actually enjoy a full cup of tea. What a luxury! Though this post is short, I hope it shows how something so mundane can be viewed in a new light and make you think twice before boiling that kettle..
Most people may assume that cerebral palsy is a physical disability but it is actually related to the brain sending out the wrong messages to muscles all over the body. In my case, this came about as I suffered hypoxia to the brain when I was born. This meant that as I was born early part of my brain didn’t receive sufficient oxygen so didn’t develop correctly as a result my brains sends the wrong signals to my arms and legs.
I had regular appointments with my consultant neurologist who would also record my walking. I remember always wearing the same pair of cycling shorts for these videos. I felt like I was on my own private catwalk in front of the camera (although I am not sure my shorts were much of a fashion statement). It felt event more like a fashion show due to the crowd that would attend these appointments along with my parents. There was the neurologist, a physio and about another three people whose names we were never told, I think they were in training but it made the whole process more of an occasion as I a crowd to impress! I would then walk back and forth across the room in front of the camera. They always tried to get me to walk normally but I couldn’t help putting my best foot forward (literally) and making sure that my walking was just the bees’ knees. I had to walk both with and without my splints. I remember always feeling gutted that the general consensus was that my walking was better with my splints than without. It made me think that the doctors just enjoyed proving the point that they were always right! As part of these video clinics, I also had to balance on one leg. I always chose my right leg first (the best one!) My consultant would count to 20 (felt like the longest 20 seconds in my life!) As my right leg was better than my left, I usually made it to 20 without too many issues on this side. It then came to my left leg… a different story. With this one I put my arms out to help me and as the seconds ticked by my arms would begin to flap more and more, I would also wobble from side to side increasingly like a windmill on steroids. I was always gutted when my right foot hit the floor before the 20 seconds. I still remember the first time that I made it all the way to 20 seconds on my left leg-one of my major achievements to date and even more important when this historic moment was recorded on camera!
Something that is particularly frustrating for me now is the fact that I had very regular and comprehensive appointments when growing up as this is when treatment is most important. When I turned 18, I was told that I would have a transition appointment to pass me onto the adult team. Needless to say, this never happened, surprise surprise! As a result, I have had to go to my GP anytime I want some support. Therefore, since the age of 18 I have not had any follow up in 6 years other than one physio appointment at university. I know this should be a positive as it shows I am maintaining my mobility on my own through my stretches and routine but it has resulted in issues. Just the other day, I went the GP with a painful foot. I felt this was linked to my CP due to the excessive impact I put my feet under through running. I asked the GP for a referral to the adult CP team. After him looking very confused and not having a clue what I was talking about I got the referral. A week later I have my appointment with the adult neurologist -good news, and I was impressed with the fast turn-around. However, when Mum and I arrived, she had no GP referral on her system and none of my medical notes. As a result she had no ways of assessing me or advising as there was no way to know my level previously. However, she was surprised to hear that I had no treatment for the past 6 years Therefore, I was referred yet again. I just feel like I am being passed around the houses for something as simple as not having my notes. Despite this mega rant (the diva is back out again!) I know that the support that I received growing up was second to none and have always been grateful to the NHS for such good quality of care despite the pressures that they are under.
I hope this shows to others going through treatment for their condition, whatever it may be, that you are not alone in the frustrations of the process. Personally, although I hated all the regular doctors’ appointments growing up, I realise now that it was worth it to give me the best chance of living an active life now my muscles have stopped growing. Also, despite my temper tantrums at what felt like constantly being told to walk properly and stretch, I have now built habits and routines that enable me to continue to do this independently.
First things first, don’t panic I am not going to spend this post writing about Prince Philip or any of the Royal Family for that matter. D of E is an activity programme for young people between 14 and 24. There are three different levels, bronze, silver and gold. The award comprises of four sections-physical, skills, volunteering and the expedition. Whilst at school I managed the bronze and silver levels. This covered a wide range of activities which you had to show progress in over a course of 6 months and personally for me a number of challenges. For the physical section, I chose trampolining. In this I had my own personal battle with a move called ‘swivel hips’ (not as much fun as it sounds!) This move involved doing a seat drop, coming up to standing and rotating 180 degrees before doing another seat drop. Therefore you needed to flip your legs round underneath you whilst in mid-air. Something I just couldn’t manage despite all of my attempts and frustration. I felt that I just resembled an electrified baby giraffe with my arms and legs flying everywhere despite my best efforts! Thankfully at school my teacher was very understanding and allowed me to get stuck into other moves which I could manage. Another area that caused issues for me was the skills section. For this I chose piano, which I was learning to play at the time. I only discovered a few weeks ago that this is in fact one of the hardest instruments for someone with CP to play (thanks for putting me up to that Mum and Dad!) This is because of the coordination required between both hands and both feet all at once. The reason this causes problems is because my brain sends the wrong signals to my legs so the messages between my brain and legs gets very confused. This was something I completely didn’t think about throughout school and my time playing piano. I just kept plodding on and progressing very slowly never thinking my CP was responsible for my frustrations! In fairness I was never destined to be the next Paul Macartney so probably didn’t put in the practice I needed to but there are some battles I am resigned to losing!
Of course, the major component of this whole programme was the expedition. In Bronze this involved two days walking and one night camping, silver was three days walking and two nights camping. To many people, this sounds like a nightmare but I really enjoy getting outdoors so was excited by the challenge. My close friends whom I completed Bronze with hated it and bailed on me for the Silver! As a group we had to carry all of our equipment (tents and all the rest of the paraphernalia) for the whole expedition. We had to plan the whole route and timings from each start point to our campsite in the evening. This was a test of our teamwork and navigation skills! When it came to the expedition, I didn’t want to do anything differently to the rest of my team despite my physical impairments. This meant that throughout the Bronze expedition when we divided up the kit, I took my fair share and walked the same distance as everyone else. During the silver expedition, as it was further my school offered for me to be driven some of the way and to join up with the rest of the team for the majority of the route. I strongly turned this down as I wanted to feel like I had fully completed it. Instead, they offered to take some of my share of the kit and bring it to the campsite each evening to save me from carrying it. After much persuasion, I agreed to this as they were massive bags. Even so, I only gave them the minimal amount (I think I just ended up handing over my sleeping bag!) as I wanted to be challenged. The rest of my team were most disappointed that I didn’t hand over the tent and other heavy items but I didn’t want to cheat myself. Whilst on the expedition itself, I constantly felt that I was holding up the remainder of my team as my walking was slower (although looking back I know this was not the case as we were stopping regularly for breaks and for all different members of our team to stay together). Whenever we stopped for a break (or I tripped and fell over) I would feel like a beetle on its back as my arms and legs were sticking up in the air with the giant bag tying me to the ground! It took a heck of a lot of effort for me to get back upright and stop the bag pulling me down again. It often felt like a slapstick comedy act as the slightest tap would cause me to topple over like a dodgy Leaning Tower of Pisa. During our silver expedition in Exmoor, we managed to get extremely lost. So much so that our teacher had to come out and help to point us in the right direction. He also helpfully told us that if we arrived at the campsite after dark we would fail. As a result of the ultimatum we started running uphill across a very uneven field with knee high grass and heather. Due to the uneven ground, I inevitably went flying and crashed to the ground. Now as my bag just about doubled my weight this was a big load to collide with the ground. I fell awkwardly on my little finger managing to bend it way too far back (like one of those weird party tricks your double jointed friends would show you in primary school-not sure what was so amazing about it, to be honest it just freaked me out!) When we got the campsite I decided it would be worth getting my finger checked as it had swelled and was very painful. I was promptly told it wasn’t broken and was just given some minimal strapping. It throbbed overnight but we still had another day of walking to get through so my attention was taken up with not getting lost and making it to our destination as soon as possible. My high pain threshold also came in handy at this point and meant I could just put my finger on the back burner. When I got home, finger still in pain, I ended up going for an x-ray and as a result was told I had a fracture! Result! Despite everyone else telling me it was nothing, this felt like a mini victory!
So there you go. My account of the dramas faced during Duke of Edinburgh. Despite all of the obstacles I faced, I was determined to complete this challenge without any allowances for my CP. I hope this shows that although things may be challenging determination and the right support will allow you to achieve things you thought were beyond you.
This is another big part of the treatment that I have for my CP which enables me to maintain such an active lifestyle and keep up with the level of mobility that I currently have. Physio involves stretches and mobility exercises. When I was really small I had daily physio sessions, then growing up I continued to have them regularly. This is because as with my other treatment for CP it is most important when growing as my leg muscles are changing and developing.
Throughout school I have distinct memories of going into my parents’ bedroom every morning before school to do my stretches. I hated it and it always felt like such a waste of time-there were so many better things to be doing with my time. Dad would help me do a number of stretches to my calves and hamstrings. Mum and Dad would always try to find ways to make this more fun and enjoyable, one example of this was when sitting with my feet on the floor I had to lift my toes up to let the train through under the bridge. Unfortunately for the train my left leg is tighter than my right so it was often a very tight squeeze to get through. As I got older, it was up to me to do my stretches myself and this would result in lots of pestering from Mum and Dad (I am sure everyone was nagged by their parents to tidy their room or do the washing up, I just had an extra item on that list! Lucky me!) In addition to this, when out walking, I was always reminded to think about my walking and put my heel down. This really annoyed me as I felt it so unfair that others didn’t need to think about their walking and could just enjoy the sunshine on a Sunday stroll. In fairness, it was not every time and I was equally unfair by just jumping straight back at Mum or Dad whenever it was raised. Despite all this, again it has meant that I am more aware of it as an adult when I am walking on my own and will nag myself every now and then (although not as much as Mum and Dad would like). As much as I hated being made to do my stretches at the time, I am grateful that it became part of my daily routine so that I could continue to do it myself when I left home. I know that my stretches help with my walking and mobility but even today I struggle to work out whether I have become worse over time. It is only through Mum and Dad’s comments that I know if I am doing enough.
As well as doing my stretches at home I had regular appointments with physios at hospital and hydrotherapy appointments in the swimming pool. This was so that I could be monitored to ensure that my mobility was not deteriorating. During these physio sessions I would perform a number of different exercises, some as simple as standing up from a kneeling position. Let me tell you now, this is not as easy as it sounds for someone with CP. As my balance is off and my muscles are tight, even just kneeling takes more work. Then trying to stand is a different ball game as the balance just gets thrown across the rounders pitch! My arms come out to play again (crucifixion style). Also the easiest way for me to stand from kneeling is to bring my legs around the side to put my foot on the floor. During my physio sessions I would spend countless hours practicing bringing my leg up to standing through the middle which was much harder due to my tight legs. It was also very important to have intensive physio after my botox injections to ensure they were as effective as possible.
In addition, on one occasion, I had a gait clinic. This involved being covered in a number of stickers which connected to wires linking to a pack on my back. I then walked up and down a very long room about 50 times. The end wall was covered in a giant picture of a moon so I remember thinking of this jazzy outfit as my space suit and telling all my friends I had been to space when I came back to school. The purpose of the many, many steps was to try to recreate my gait. At the end of the clinic, a computer recreated my legs so I could see what my bones looked like when walking. The only issue with this was as I was walking up and down, I was told to walk normally, however, as I was being watched I automatically put on my good walking. I suppose that was the purpose of the long walk to the moon, so that eventually by normal walking pattern would materialise.
Although it may sound as though I didn’t enjoy physio (at the time I certainly didn’t!) I was lucky enough to have some very caring and professional physios looking after me. Their endless patience and kind nature meant that I would persevere despite my frustrations at the stretches being too difficult, boring or painful. Despite my temper tantrums at what felt like constantly being told to walk properly and stretch, I have now built habits and routines that enable me to continue to do this independently.
This post is slightly different but this was one of the things that I didn’t expect to be affected at all my by CP. However, as this has become one of my favourite hobbies I have come to realise that even this is affected by my CP. It still has not stopped me from enjoying it but I have a new realisation for how I manage my condition day to day.
I spent 3 years working in a professional kitchen over my summer holidays during a big event in my local town. This job involved working from between 6am and 10pm. We were on our feet all day and our only breaks to sit down were meal times. Health and safety madness of course meant no chairs in the kitchen. This is hard enough for anyone but I found that my legs were so knackered by the end of the crazy long day that my ankles became swollen and my the end of the week I was struggling to walk. I had to lie down at night with my feet above my head against the wall to help rest my feet and recover! By the end of the week I felt that I had aged by about 60 years as I was hobbling around-not sure the customers would be too pleased to think a crippled pensioner was responsible for their starter! In addition to the exhaustion I felt in my legs from the long hours on my feet, due to the fact my arms and hands have mild CP, my knife skills are slower and poorer resulting in many cuts from the lethally sharp knives in the kitchen. Each year that I returned, I would forget how much sharper professional knives are! So much so that I gained a reputation for using up the blue plasters and gloves in the first aid box and was consistently the first one requiring medical attention on day one. I ended the week morphing into an avatar. One year, on the first day of the event, I was let loose on a mandolin to slice a mountain of cucumbers. This resulted in my gouging my thumb and a heck of a lot of pain. Needless to say I didn’t touch the mandolin again after that drama-the rest of the staff also learnt that I was safer as far away as possible from this beast!
Despite all of my injuries and exhaustion, I loved my time working at these events as it gave me an experience in a professional kitchen which was so unlike anything I had done previously. However, when it came to time for service, I was terrified. It was a very loud and male dominated environment (like any kitchen really) but I always felt I was slowing the team down when I was plating up the dishes I was responsible for. I felt much happier working behind the scenes peeling enough cucumbers to turn my hands green (so now I have morphed into a geriatric avatar suffering from gangrene-not sure what health and safety would have to say about that!) Having said all this, I thoroughly enjoyed the event each time it came around (although I only lasted 3 years-any longer than that and I wouldn’t have any fingers left!)
Another summer job I did which involved cooking on a farm where I was responsible for feeding the 5,000 *slight exaggeration but grant me some artistic license!* single-handedly during their hop picking. During this job I would spend my time collecting hoards of fruit and veg from all over the garden and hauling it back to the kitchen, determined to lug it all back without any help. Even if this did mean I dropped a few onions or apples on my way back when plodding down some pretty wonky steps through the garden! Then came to the best bit-whipping up a storm in the kitchen- my hands are covered in small cut and burn scars from all the times I have fumbled with a knife or caught my hand taking something out the oven over the years. Although I often get frustrated at the scars I have accumulated, I suppose it is all part of the process.
I am very grateful to have the physical ability to do
something I love, I realise that this is not possible for everyone with a
disability. I hope this shows that with determination you can always find a way
to get stuck into things that you enjoy.
Following on from my last post on splints, it made logical sense to discuss another fashion statement-shoes. Although this may sound like I am being a diva, shoes have been a touchy subject for me throughout my life.
Throughout my time at school I had the ongoing battle of finding shoes to fit over my splints. I was provided a pair with my splints through the NHS as they had to be much wider and deeper than normal shoes. However let me tell you now that some of them were simply horrendous. I have a very clear memory of going to collect my splints and shoes age 13 (so was feeling very conscious at the time of what my feet would look like at school). I was given the shoes and splints and had to hold in my tears to stop myself screaming at the Orthotist. Once outside the hospital I burst into tears right next to the bins by the front door (a real Beyoncé moment, I know). This is because the shoes were just so disgusting. Think clown shoes for 80 year olds with some extra geekiness thrown in. They were just huge and super clunky black monsters (definitely nothing like the heeled Clark bootleg shoes that were all the rage at the time-I was gutted this was not an option for me-I felt I was missing out on a defining moment of my childhood).
Anyway after Mum had managed to work her magic and calm me down we had to tackle the next challenge. Finding a pair of shoes that I could face wearing to school with my splints without being mortified. This was an epic effort (especially by Mum who was tirelessly researching and googling behind the scenes). We would traipse around endless shoe shops with the splints in tow and Mum somehow managed to put up with me getting increasingly angry and frustrated that no normal looking shoes would fit over my splints. I distinctly remember one visit to Clarks where we were trying to get a pair of shoes over my splints (this takes a lot of elbow grease and shoe horns to get the shoes over the splints for the first time) the shop assistant told us we couldn’t do that to the shoes as we would break them whilst trying them on. Mum and I promptly got up and walked out. Clarks were just not willing to cooperate despite the fact that we had nearly succeeded as they were too scared of what may happen to their precious shoes!
It took until I was 15 for a gamechanger in the shoe world to make it to the NHS which is the Hatchback. These shoes were just an ingenious creation, they are a hinged shoe that opened from the back (and they just looked like a normal human plimsol-not some alien footwear). I am so glad that these came into my life.
Unfortunately for me, the shoe drama did not end with the splints. This is because, due to the way I walk I just ruin every pair of shoes that come into my possession. This is because I wear out the front of my shoes by walking on my toes, I also scuff the shoes within minutes due to the frequency of my falls. This has meant that I get extremely frustrated and angry whenever I wear my shoes out and they have to be thrown away. I have taken this so far that I am scared of wearing my new shoes. I will wait for a full year after having bought my shoes before I dare to wear them. Maybe this could be an idea for a new series of The Secret Life of Hoarders- I feel my collection would be a bit more classy than the strange gnomes some people seem to collect. I get infuriated that my shoes have such a small lifespan. I know this may seem like a pedantic thing to get in a flap about but it really gets to me. Even more so when I know that the shoes are good quality and should last many years.
Recently, I got ridiculously wound up over my pair of Birkenstocks. The staple had come out holding one of the buckles in place and as I had only recently started wearing them (after the year-long window of squirrelling them away in my wardrobe) I was convinced the buckle had come out as a result of my walking and got into a mega sulk all day-mega diva moment but having a tantrum in the middle of Office shoe shop is far from ideal! This is not fun and is even worse for my Mum who gets pulled into my madness and has to somehow convince me that it is only shoes! Maybe I need to try some hypnotherapy or meditation to help me overcome my fear of shoes, I reckon that shoes for me are the equivalent to another persons snakes or spiders!
So from all of my ramblings here you can see that shoes have and still continue to be something that frustrate me greatly. I am aware that there are much more important things to worry about in the world right now but I hope this shows some of the reality of living with CP and how something as mundane as shoes can become problematic. I am sure that with time my relationship with shoes will improve and it will become something I eventually accept as part of my life with CP.
So I felt the time had come to take on something which was a big part of my life for the first 15 years- splints, braces, AFO’s ( no these are not spaceships unfortunately that would have been much more exciting – Ankle Foot Orthoses). Now don’t let the many names confuse you the idea is very simple. The splints are plastic braces which I wore every day on both legs. My splints went from my knee down around the back of my leg and foot. The purpose is to keep my foot fixed at a 90 degree angle so that I am forced to put my heel down when walking. I have worn these ever since I started walking until the age of 17. Although I can now see how beneficial they were, I was certainly not a fan at the time (ah hindsight is a wonderful thing!)
The process of getting new splints fitted was both horrible and exciting at the same time. I had to go to the Orthotics Department in the dreaded yellow building (so you can straight away see the mixed emotions here for me aged 6!) after waiting far too long for my appointment (it felt like they are always over run and understaffed in this place), my time to see Claire would come (she was the lovely Orthotist that I saw regularly). The first stage of getting new splints was to have my feel and legs mounded so that they would (supposedly) fit me perfectly. This involved getting my legs covered in plaster of Paris (the same stuff they use in casts when you break a bone) this felt lovely as it was just a leg massage-my personal spa! The casts then had to be taken off so they could be dried and sent off to create the splints. This part always petrified me. A strip of hard plastic was slid under the front of the cast against my shin. Then Claire would run a super sharp scalpel along the plastic strip to cut open the cast and release my leg. Every time this happened I would pray my leg not get attacked by the scalpel! This never happened as the staff were so professional but my mind liked to play these fun games with me! I always remember being amazed at how quick this whole process was and loved being able to see a full on cast off both my legs. Next up I had to choose a new pattern for my splints (the best bit). I definitely worked my way through every design on offer as I required new splints on a regular basis. I distinctly remember one pair which I decided to get blank white so I could then create my own artwork to put on them using permanent marker. This was great fun as I got my friends to write their own messages (like you do when you had a broken arm at school!) I think I felt this was the best option as I had got through all the other designs which were not football orientated for the boys! The casts of my legs were sent off and I would come back 4 weeks later to collect my new splints. This is where the next problem started. The joy of blisters! I had to test out the new splints to make sure they fitted correctly. They would be blasted all over with a heat gun to make sure nothing was rubbing (but try as they might my feet are still misshapen to this day as a result of my splints!) Going back to school with my new splints was always exiting to show my friends my latest accessory!
Although this may all sound like sunshine and rainbows whilst I am on a mission to find the next big hit for London Fashion Week! I can tell you now this was definitely not the case most of the time. I had many a tantrum whilst at primary school over the fact that I was the only one wearing splints and had to be the odd one out. Also there were many times when my splints were just painful and uncomfortable as I had to wear them all day everyday. I have vivid memories of assembly every morning at primary school. We had to sit cross legged on the sports hall floor. This was just the worst way to sit as the top of my splints would dig into my thighs when I crossed my legs,, so much so that I got bruises on my legs from the splints digging. I then would spend the whole assembly trying to get more comfortable by putting my legs out to the side, then losing my balance and elbowing my friends sitting either side of me! Over time I did just learn to accept them and came to see them as part of my school uniform, my friends at school never batted an eyelid from day one and not one questioned the strange things on my legs.
Although my splints were a massive source of drama and upset, I have now come to realise how important they were for me when my muscles in my legs were growing as they massively improved my walking. I know that as a result of my splints I am able to have my active a full on lifestyle now.
Hockey My dad and brother are completely hockey mad, so as a result, I would be taken along to training every Sunday morning. Hockey has always been a sport that I wished I was good at as it is such a big part of our family (trust me it feels like the conversation reverts to this topic every dinner time!) I remember my coach being a very scary and shouty man (although I know he was lovely underneath the loud exterior). I was always allowed to get involved in everything (but he has since reminded me of how he helped me to cheat on the shuttles)-I would have a shorter distance to run to compared with everyone else. I found this hugely embarrassing but I guess it was better than keeping everyone waiting on those rainy Sunday mornings. I always remember being scared whenever we played matches, even if they were just friendly ones, as I knew that if I got the ball, I would mess up and let the team down. But at the same time I was always frustrated with myself that I didn’t get more involved in the game. So either way, I was at a loss and this just proved competitive team sport was not the one for me. As I did all these extra hockey sessions, my primary school let me play in their hockey team-I don’t know what were they thinking. That is definitely a sure fire way for the school to lose their reputation and let us fall to the bottom of the leader board. But I guess we were only 7 so no one really paid attention to these things. I remember feeling both proud, excited and absolutely terrified at the same time. I really don’t know how I managed to even function with this crazy hurricane of emotion over a match running through my head. But again during these matches I just didn’t want the ball to be passed to me as I was scared and embarrassed that I would let the team down but at the same time I would be frustrated with myself that I didn’t get more involved in the games. The difference with these matches being that the pressure was so much greater as it was no longer just a friendly practice.
Tennis I have a mental battle with tennis every time it is suggested. My family will often suggest a friendly match when everyone meets up at Easter. For me, this is just embarrassing, even if I know it is just a friendly match with family. This is because we will always play doubles and my spatial awareness is just shocking. As a result I continually feel I am letting my partner down and find the whole experience mortifying. Regardless of who my teammate is, we will always loose and I know full well it is entirely down to me. This is for a number of reasons related to my CP. Firstly, when running around the court, I cannot move as quickly as I would like due to the CP affecting my legs. Secondly, my coordination of my arms and legs is all over the place, combining this with the fact that my squint has affected my depth perception means I am always swinging my racquet wildly without often hitting the ball.
I took ballet lessons for several years when I was at primary school but whenever it came to doing my grade exams, I would take a presentation class exam. This meant that I did the exams on my own rather than with my classmates and would only choose the dances and exercises that I could do. I remember feeling so grateful that my teacher was allowed to come in with me to the exams so I didn’t need to face the scary examiners on my own (I got special treatment as the teacher was not allowed to go into the normal exams). This was a really positive experience as I got a huge sense of achievement and satisfaction out of passing my exams. Also, I had the loveliest teacher who didn’t force me to do things I couldn’t and was just willing to fully engage with me despite the issues I had. This meant that I felt fully accepted and involved in the class despite not always doing the same exercises as others.
I really enjoyed this sport, I reckon this was down to it being an individual sport so I didn’t have to cope with the embarrassment and sense of letting other people down. Also, my teacher was just a star and just had a really welcoming attitude. She knew exactly when to push me out of my comfort zone so I could try something new and I never felt that she was treating me any different to her other students. The problem that I had with horse riding was that as my leg and arm muscles contract I struggled to keep my feet in the stirrups as my heels would continually come up and I would slide out. It was also more difficult to coordinate the movement of my arms and legs when everything was working independently of each other. Lastly, my balance is tested when sitting on the horse. I distinctly remember going on a ride out in the local area and completely losing my balance. I slid off the saddle but was scared to fall off so I was hanging off the side of my lovely pony William whilst clinging on for dear life! I do remember just never wanting to partake in the shows as I didn’t want the pressure of everyone watching and being judged. My teacher persuaded me to do one show where I did dressage and jumping. I came last in both events and was given a rosette for my participation-not something I was going to do again in a hurry!
I really enjoy swimming and every summer holiday I realise how much I miss it through the rest of the year . The problem I have is due to my CP, my left side is much weaker than my right. This means that when swimming front crawl, I cannot stay in a straight line and end up swimming in circles if I am not careful. I think that over the years I have learnt to overcompensate for this and end up veering to the right which makes very little sense! I definitely am a long distance swimmer, on our most recent family holiday to Spain, Dad and I went on one particularly long pre breakfast swim. There was a swimming lane which was 1.2km in length. Dad persuaded me to do it with him by telling me it would only take half an hour. We were in the water for 50 minutes. The problem that I encountered was being forced to do breaststroke (my least favourite stroke!) This is because, when doing crawl, I couldn’t stay in a straight line and Dad had to keep calling me back on course. I then tried to swap over to backstroke but that was just a shambles as I had no idea where I was going. Therefore I resorted to breaststroke. This was very frustrating as I never feel like I am making any progress as I just go so slowly. During another family holiday we spent some time on a boat in Turkey. I would take myself off for pre breakfast swims and would head out straight across the bay that we were staying in, across the shipping lane regardless of all the boats that may be coming and going.
So all in all, although I may get frustrated and embarrassed when I struggle with some of these hobbies. I am very grateful that despite my CP I am able to get stuck into so many different things. I am aware that this is not necessarily the case for everyone button I hope it shows that even if you get frustrated, embarrassed or just find something difficult, it is still worth giving it a go as you never know how you may surprise yourselves and achieve more than you ever thought you could.
I have never been a fan of competitive sports at school for a number of reasons and have had various differing experiences over the years. Below are a few prime examples:
Primary School My primary school were amazing at ensuring I was fully included in all team sports. I remember being given 10 minutes extra time at the end of every sports lesson to give me time to get changed as I had the fun and games of getting my splints on and off. Also due to my CP my coordination is pretty poor so these things just take more effort and time. Even the annual sports day at the end of the summer term. At sports day everyone would be included in at least one race. Everyone at school was a member of a different house or team who would all create team camps in the middle of the athletics track. There were posters, flags and lots of cheering. I always remember doing the 800 metres. Everyone else lined up on the start line, but I would walk away from the start with my sports teacher to give me a head start. My teacher and I would walk forward she would ask me when I thought I was far enough ahead, I would stop and get ready to run my race. This meant that I finished nearly at the same time as everyone else as a result of my head start. However, I still finish last despite my accelerated start, but I had the whole school cheering me over the finish line when I was the last one left running. Although this was a lovely attitude for my school to have about me getting involved in sports day, I still remember being massively embarrassed about being the last one left running. This whole experience apparently bought my mum to tears as she just couldn’t believe that I did it! I had no idea at the time-I was just trying to hide how embarrassed I was at being the last one over the line. The whole school was just waiting for the tortoise to get a move on so the next race could be started!
Secondary school Unfortunately my experience of sport at secondary school was not as positive. I have a vivid memory of one lesson when we were playing lacrosse (definitely not the sport for me) during the warm up, my shoelace came undone. My teacher spotted this and straight away bent down to do up my shoelace as she thought I was not capable. I just stood there baffled by her assumptions and confused as to how I ended up in that situation. I know I am slow but I reckon that if I am able to put my shoes on I can just about manage to tie the lace up! Sports day and team sports were not the same as at primary school, if you were not super sporty and competitive they did very little to include you in sports. Sports day was only for a few select students who were actually good at athletics. I remember during an athletics lesson we were doing hurdles. I was encouraged by my teacher to run alongside the hurdles and be a pace maker during for those actually doing them. Despite the fact that I didn’t even jump any hurdles I still finished after my friends-pretty useless pacemaker I was! Being timed to do the 100 meters was just mortifying as I would be so nervous starting alongside everyone else. When our teacher blew the whistle everyone else would shoot off ahead of me like an undercover Usain Bolt. I would be left flailing around behind panting like a basset hound. Meanwhile everyone else had already crossed the line and were getting bored waiting for me whilst the stop watch kept ticking. So when I finally made it over legs like jelly I was completely embarrassed and just hated being the last one running. I remember during any netball or basketball lessons dreading the part when we had to play matches. This was because I was so scared that I would be passed the ball, drop it or miss the pass and mess up for the rest of the team. My teammates would quickly learn that it was not worth passing me the ball so I just ran up and down the court like a headless chicken in slow mo waving my arms around like I was trying and failing to fly! I was then just frustrated that I was not involved enough in the game. I could just never win (literally and figuratively!)
So all in all I have had a pretty mixed time with sports at school. This is both due to my attitude and embarrassment about sport as well as the attitude of those around me. I have come to realise now that team sport is just not for me. Thankfully I do manage to enjoy sport but I just stick to the individual ones so I don’t have to cope with the embarrassment. I make a great lonesome elephant on a treadmill.