Over lockdown thanks to a connection through my blog, I had the fantastic opportunity to do some virtual talks for groups of physiotherapists and occupational therapists (OT) along with other individuals with CP and similar injuries. The physios and OTs were keen to improve the transition of patients from paediatric (child) to adult services so wanted to hear our stories and any advice that we had for suggested changes to the current process.
From my own experience the care I received for my cerebral palsy throughout paediatrics was fantastic with a dedicated supportive team and regular check-ups and appointments. I was advised of a transition appointment to meet the adult services team so I would have a point of contact but this never happened. Therefore as an adult I continued to do my own physio based on what I had been advised when I was 17 years old. When I did need specific help it was a case of going round the houses to finally get the help I needed. Unfortunately the funding and backing of adult services is not sufficient so they are limited in what is on offer.
I got a huge amount out of this opportunity to speak to physiotherapists and occupational therapists for a number of reason but above all the chance to give back and help the physios and OTs knowing that this would then help them to improve their practice and improve the lives of other children and families was so rewarding. They were so grateful to me and the other speakers for our time and for being so open about our experiences, I felt that whatever I said would have gone down well. This is also huge for my growing confidence in public speaking; as it was my story it was such a relief to know that no one could tell me it was wrong or to be judged.
The chance to properly meet other individuals with CP meant a huge amount to me. This was the first opportunity I have had to meet others in a similar situation. Throughout all my treatment and time with CP all my interaction has either been with healthcare professionals or fully able bodied people. Each of these amazing people at the workshop had their own inspiring story to tell but the realisation that I related hugely to their experiences was a breakthrough. Up to this point I had not realised that this sense of fitting in and relatability was not something I had realised that I missed. Prior to this point my relationships have all been with fully able bodied people. This has been fantastic as I have never felt any different to my friends and family, however, after these talks I realised how much there was for me to gain by interacting with others who had such similar and relatable experiences. It felt like I had validation and internal acceptance for the previous feelings of frustration, weakness and not feeling good enough. I have always felt fully accepted my by friends which I am extremely grateful for but the chance to realise I was not alone in my sense of difference was massive and not something I realised I needed.
From a physical perspective I have felt that I fall through the gaps when it comes to sports groups or teams, not good enough to fit with the fully able bodied people but not bad enough to take part in wheelchair sports so the chance to meet other individuals similar to me was huge; and to realise I am not be alone in this was so important.
Having heard feedback from physios, it gave me real hope that things are changing for the next generation, both in the attitude to paediatric treatment and the approach to transition into adult care so they can do all that is possible to help the patients and their families. It really felt that by hearing our own experiences, it would go on to make a difference to others going through a similar process
Welcome to my latest hair-brained idea-the Lake District on Cuthbert the crutches, that was quite the experience. If you want my honest advice I would not do it again with Cuthbert in tow despite how much they tried to help.
So let’s go from the beginning
Firstly, it’s a long way-I know I did check the map before left but it’s a whole different ball game when you actually make the journey.
I started my journey by taking the 2 flights of stairs down from my flat to get my taxi, this was like climbing a mountain in itself. Carrying anything more than just a rucksack on crutches is a questionable move so by the end I was shattered and wobbly but the taxi driver came to my rescue and I made it to Euston station in just about one piece.
Upon entering the station again it was a scramble on the crutches with my bags but the extremely helpful people from Passenger Assistance came to my rescue. However, I was then taken hostage with 40 minutes to go before my train. I had envisioned a leisurely coffee and breakfast in the station whist waiting for my friend and our train. Cleary I had forgotten about the luggage and crutches as even without any bags, how was I going to carry my coffee……. magically grow a third arm? Who knows I was clearly losing it from my knackering morning.
So anyway I got side-tracked by the thought of caffeine. The Passenger Assistance staff got me to their office with an array of seats to I made myself at home. The next thing I know, they want me on the buggy so I can get on the train with another half an hour to go. I delayed them until my friend arrived so at least she knew where I was (after my very questionable directions to the passenger assistance office, as expected from me… the Geographer). So onto the buggy which I was grateful for as of course our seats were on the furthest carriage and the furthest train so very relieved to have VIP treatment.
The train was packed which meant heading to and from the toilet on our 5 hour journey I definitely managed to take out our fellow passengers’ knee caps whilst wobbling down the narrow carriage aisle on crutches.
Next challenge, changing trains. The fun just kept coming. We were provided with ramps on and off the trains which were both a help and hindrance. You know my balance is dodgy on level ground so throw a steep gradient in there and it was really fun. It felt like I took 10 minutes to muster the courage to face the gradient getting off the train. Onto the platform to head to our next train. The platform had the slightest of slopes which made me feel like I was heading straight onto the train tracks but I did manage to make it on board our second and final train.
Okay, we made it to Windermere without any other breakages (just). Next our accommodation was a 20 minute walk from the station-this was not happening on crutches so a 7 minute bus trip was needed (feeling ridiculous as usually this would be a straightforward walk). So as we were on the bus we decided to go down to Lake Windermere (a further 10 minute walk from our accommodation). Little did I know this would be down a very steep hill- I know it was naivety on my part as we were in the Lake District, which is known for its mountains, so I should have been better prepared. So we had our lunch by the lake, very pretty except we were surrounded by a ton of tourists and even more geese made it interesting.
Next was to finally get to our accommodation, oh lord what an epic effort. To clarify this should a short 10 minute walk uphill from the lakeside. In reality this was a steep hill with a rucksack, weighing a ton, pulling me back down the hill. I am extremely grateful to my friend for lugging my other bag (along with her own) up that hill. I have not previously done more than just moving round the house on crutches so my arms did not know what hit them. In reality the only way for me to get up the hill was to use my injured leg and partially put weight through it as my arms were not up to the battle of letting me just use my left leg. Somehow (with stops every 5 minutes) after what felt like hours we made it to the accommodation to find 2 flights of stairs-ah the fun doesn’t stop. So finally got there and I crashed and sent my friend to do the food shop (sounds like a great trip for her so far but I promise she had a lovely time).
That evening we decided to go out for a pre dinner walk and try to find a way down to the lake which avoided the tourists and geese. So back down the hill… this time the route was less steep and crowded and no bags so an improvement but again I was forced to put some weight on my injured leg as I didn’t want to go flying down the hill. To our intense frustration despite our efforts all other access to the Lake was private so we couldn’t get through. The only answer-wine. At least we found a pub to help us with this. So next (after only 1 glass of wine-anymore and I would not have any hope), we had to come BACK UP THE HILL and TWO FLIGHTS OF STAIRS to our accommodation. If the downhill was a struggle the uphill after wine was a whole new challenge. Every time I put any weight through my injured leg I heard my Doctor telling me off so would then manage about three hops without putting weight on it before my arms screamed at me and I had to give in. WE GOT THERE.
The next day my friend was keen to do something together so a boat trip it was. This was lovely (once we made it down the dreaded hill to the Lake) but a great way for me to see more views as climbing the mountains was off the cards and so nice to spend time with my friend. At the first stop on the boat trip my friend headed off on a hike and I continued onto the next stop. Here the town was a mile from the lakeside so there was no way I was doing a 20 minute walk on crutches! I found a lovely bench by the lakeside for my lunch and did some lovely people watching with a view (seeing people out and about living their lives was so lovely and great for my recent cabin fever). I wish I could have joined my friend as the scenery was stunning and being in nature makes me so happy but I will be back on two legs. I WILL BE BACK.
After the boat trip it was back up the hill SO MUCH FUN. At least the hordes of tourists cleared out the way when they saw my shambolic self, wobbling toward them so I had a clear route to my destination. And crash onto the sofa phew! However all these long crutch sessions had another consequence on top of the dead arms, blisters ah so fun. I was popping Nurofen like smarties at the end of each day but it was worth it
Our last day in Windermere meant only one thing, back on with the bags, feeling like a overburdened turtle we headed back down my favourite hill. My friend had finally discovered a way to get to the lake which escaped the tourists and geese-hooray. The downside, it was a mile and a half away there and back. Oh boy here we go. Thankfully once we were down the hill it was flat and there were plenty of benches to crash onto for a breather to allow my arms to recover marginally so they were not complete jelly. Once again I had to resort to using my injured right leg as the one leg life was just not getting me anywhere and I was conscious of going at the pace of a snail in superglue along the lakeside for my friend so had to do all I could to keep moving. It felt like we had completed marathon distances when we finally got back but it was worth it for a change of scene
Onto our next stop to the West of the Lakes on the coast-Seascale. We were staying in lovely woodland cabin… in the middle of nowhere surrounded by sheep, chickens and mountains. Idyllic apart from the minor hiccup that the toilet was outside and accessed via some deep gravel so a battle on crutches. In addition the main bedroom was up a very steep staircase (code word for ladder) so it was the (very comfortable) sofa-bed for me or I would have risked breaking the other leg. This is the perfect location for escaping and spending your days out in nature walking and exploring the lakes. It was not so much the perfect location for staying put with a broken knee. No WIFI and no people watching options so it was the sheep and chickens for entertainment (yes I did resort to naming the sheep- Daphne, Daisy (who I quickly realised was male so had a name change to Donald) and Dennis.
My friends left me for a full day hike (10 am to 7pm) so my day consisted of reading, attempting a nap- the cabin had no curtains over its lovely huge windows so it was sunrise wake up calls all round just what we needed from a holiday. Between the reading and napping were missions to the bathroom and chatting to my new non-human friends. I was so excited to have my friends back after their day out and they were knackered from their long hike but I just waited patiently for them to cook me dinner. I felt very two faced as at the end of the day my leg would be sore so I would be absolutely no help getting dinner then the next minute I would be frustrated with myself so walk around making a cup of tea so my friends had no idea which way I was going next, couch potato or sprightly Sally who chose to ignore her doctors’ advice.
The next day we took a team trip to Wast Water. One of my friends headed off on another hike my other friend was exhausted from the hike the day before so I had company! Hooray! It was lovely to have a change of scene and we had some great people watching opportunities with families spending the day by the lake with swimming, kayaking and paddle-boarding to entertain us. It was all great when I could stay seated until I needed to loo. The only option was a nature wee in some deep ferns and bracken. Crouching was a real challenge and I definitely felt my knee crunching on the way down and up but needs must and all my friends will tell you how much water I drink. This meant I had to be extremely strict with myself to stop drinking after 9 pm to avoid a midnight hop to the loo back at our cabin. I am pleased to report I succeeded and did not need any pitch black bathroom hopathons.
Our last day involved a long drive and train journey home so was a long journey. We had a lunch stop at another lake which was a 5 minute walk from the car park. However, this 5 minute walk included giant dodgy steps, tree roots and a pebbly beach so this trip has kept me and my crutches guessing to the very end. We stopped at services on the road and I had to use the disabled lift to access the services. The lift with a door which weighed a tonne so was nigh on impossible to open. We made it to the station where again we had passenger assistance. However there was no buggy waiting for us this time, just a friendly lady to carry my bag (so not sure how helpful it was but hey ho!) Thankfully our return train was a lot less busy so no one lost their knee caps and we made it back to London. At St Pancreas, I had a lovely man waiting for me with a wheelchair which was a relief as it was miles to the exit. However he quickly got me to a taxi rank with my bags loaded onboard before I had a chance to explain I wanted an Uber so my only option was to spend a tonne on my taxi home! Finally home after 12 hours travelling and a long day.
This trip on crutches made me realize how difficult and inaccessible these trips are for those less mobile than myself and despite the fact the trip was very frustrating and difficult and my desperate wish to be out walking with my pals I was very grateful to know the crutches were temporary and that I would have future opportunities to visit and walk in the Lakes. P.S. sorry for the length of this post I had to occupy myself on a weekend from the sofa so if you made it this far, thank you so much.
Downright rubbish. That’s what. So you know how I was just celebrating being rid of Bill the Boot and excited to be out enjoying the world re-opening. Life had other plans and it is now a mismatched déjà vu. I have fractured my right knee. Clearly my right side was just fed up with my left foot getting all the attention so my right knee wanted to join the party. Excuse me, you were definitely not invited so if you would kindly piss right off that would be great. But no. Here we are again fractured knee and back on crutches. Only this time it is worse. I have to balance on my left leg (the leg affected by my cerebral plasy). One word, disaster. So not only do I feel shit about the fact I have screwed my knee and that is just too painful, on top of that when I want to go anywhere on the crutches I am reminded of how weak my left side is and how I have as much balance as a pancake trying to stay on the ceiling, nil.
I reckon it took a month for me to realise something was wrong due to my ridiculously high pain threshold. I have always thought that was a good thing but when I can’t identify that I have had a fracture its clearly causing some mixed messages. Both my doctor and physio were convinced it was just my tendons so why did the bones need to get involved? I just cannot listen to my own body clearly.
Sorry for being the biggest downer but it’s pretty tricky right now as I can’t even bake as I don’t have the option of hopping on my left leg without crutches so carrying boxes of eggs round the kitchen is a no go. On top of which the world is waking up and I feel trapped and reliant on others for every single tiny thing. Not good.
I know things could be worse as is always the case and I am so grateful to be mobile enough to do all that I do but this has been a real set back. Even more so now that I feel I will not be able to do the amount of activity I want to due to the continuous injuries, the only option I feel I have going forward is to do less of what I love which is hard. Really hard. It blows my mind that I have no breakages for 25 years and then bam two fractures in the past six months, is this just my new normal if I want to keep running like a crazy lady, run, crash, run, crash? That’s not going to work so I need to get my thinking cap on and figure out another solution to keep me sane.
I guess that will just have to be more variety and knowing when to say no or turn things down (impossible for me so not sure how that will work). It’s going to be a long learning curve and I will get there one day but for now I just need to sit still-at least I have the tennis and football.
Hello friends. I know it has been a while so apologies for the lack of brain waves filling your lives recently (although I know you have all been far too busy making the most of the pubs reopening to notice so all is good).
Thankfully I am now rid of Bill the Boot-that was just a ridiculously long ordeal which I am very pleased to be past-who knew a fractured foot which I didn’t even feel, or see on the scan, would occupy so much of my time – just greedy really. I will be forever grateful for all of your support during my Brownie Bakeathon to keep me sane as well as raise an incredible amount of money for such a worthy cause, (raising £7,200 for Scope helped put spring in my broken step!
Getting rid of Bill meant one thing after a tonne of physio (actually only 4 weeks but it felt like an eternity)……. I WAS ALLOWED TO RUN.
However, after all the blood sweat and tears it took to get me back to running (single leg squats are, and will always be, hideous-my left leg is just not designed to do that) I was expecting to be Usain Bolt and the reality was so far from that, it was a disaster. A disaster that my brain was not ready to process. I have been plugging away at Couch to 5K once I was given the green light on running again by my physio, I had to run on very flat, short grass as I did not trust my balance after three months of not using my left leg and felt like Bambi on jelly so had to stay well clear of potholes, dodgy pavements and mismatched footpath so the Wimbledon Centre Court style grass felt like the right place to start.
Okay so that is all well and good, I felt like I could stand upright without falling over and crashing down. So to begin running was where the problems started. With all the physio the focus was now on my magnificent new gait, long strides and knees high so I could clear the ground- simple. In my mind I was bounding along with nice high knees, excellent clearance arms pumping just like any normal person (or Usain Bolt). How wrong I was as you can see from the video. Clearly there is disconnect between my legs and brain which I was not ready for, my own perception and reality were worlds apart and it was a strange place to be. Normal running is not feasible for me and I know that but I just did not expect to look like I do in this video. In reality my immediate response is to question why I would bother running if I look like that (not that this is something anyone has ever said but we are all our own worst critic so I had to voice it although it was not as stylish voice over, much more of a garbled mess which only I could understand). I was shocked that despite all my work on long strides to make sure that I had clearance with my left leg to balance my gait. I would still insist on dragging my left leg like it was made of lead and my arms just looked like a wooden puppet without any use.
I was not ready to accept that was what I looked like and then seeing my walking was just a whole other shocker-who really wants to look like that? I now start to understand why bouncers at university clubs thought I was totally beyond gone when I had only had a couple of drinks. I then questioned all the interactions I had in the past with people who I don’t know and made me think I almost need a sign on my forehead to explain this crazy lady walking across the restaurant and why I look the way that I do, or that cerebral palsy (CP) needs to be the first thing I mention after my name when I meet someone. I was completely thrown by it and felt like the Centre Court grass had been pulled out from under my very unstable legs. And you know the mad thing, I requested this video as I wanted to see what else I needed to work on, I mean how much punishment do I really want?
I am so proud of the fact I have always done whatever I want to do and I know I have CP but I just completely did not recognise the fact that I look different as a result of that (bit slow off the mark I know only 26 years down the line here) but you know what-there is no normal, everyone is unique and that is what makes us such brilliant and wonderful humans. It has been a tricky few weeks giving myself this pep talk but I am getting there slowly. There is no point hiding from every photo or video there ever was of me, I am who I am and I can’t do anything about that as we only have one body so I just need to suck it up and make the most of it. The fact I am getting out running and walking is something to be hugely proud of so who actually cares what it looks like? If people do care they are clearly not people I want to bother with. I just need to work on convincing myself of that as it would be pretty useful and may come in handy one day.
Welcome to Lockdown 3…. don’t panic – I can help you because Yazzi’s Kitchen has reopened after its Christmas break to continue baking brownies to raise money for Scope (a brilliant disability equality charity). If you are anything like me and need chocolate every single day, then a January in Lockdown is the ultimate time for all things chocolate. So let me brighten up your grey, dark January days with a box of chocolate brownies.
This bakeathon which kicked off in November has not been without its fun and games. Let me introduce you to Bill the Boot, he is my weight displacement boot that I have had to wear for the last two months since fracturing a bone in my foot while running in the autumn.
This elephant on a treadmill is now on a pogo stick in outer space. This video is also co-starring Chloe and Christian the Crutches
This development has made baking all the more fun – especially when trying to carry 12 eggs or a knife whilst hopping. No major disasters yet although I don’t want to jinx it as the hopathon is still in full force 6 weeks down the line. My right leg is really not enjoying this drama, let me tell you I have definitely gained a Beyoncé Butt – just a shame it is so lopsided!
Baking is easier without the assistance of Chloe and Christian (my charming crutches) so that I can have my arms free to keep my balance and lug around mega sacks of chocolate
Let me offer one piece of advice based on my time to with Bill so far. Do not be a hero. If something is painful – make sure you get answers. My left foot has not been having a good time since September but it took until Mid November to find the stress fracture and be saved by Bill so this whole drama has become a marathon epic. This is not quite the friendship I envisioned but you’ve gotta do what you gotta do.
Baking has definitely kept me and Bill sane even if I still do not trust myself on crutches. On some days it feels like I am hopping on custard. My balance is bad enough on a good day so this is quite the challenge.
I thought I would be free from Bill this week but unfortunately my left foot is in slow motion so taking its own sweet time to heal. As a result I am back on crutches and still in with Bill for another 3 weeks. I suppose the one benefit of lockdown is I am not missing out on anything even if I do feel like I am in some weird Doctor Who time warp where it is a continuous cycle of wake up, hop, work, bake, hop, collapse and sleep.
I know a silly question – if you don’t need chocolate 24/7 then I am not sure why you are here to be honest.
If you need something to fuel your lockdown home workouts or Netflix marathons you have come to the right place.
Now that I have your attention I can reveal my big plans (or not so big, maybe mouse sized is more accurate).
I want to combine my love for baking with a cause that is very close to my heart, equality for the disabled. I will be baking and sending brownies to people who donate to my charity fundraising for Scope – The Disability Equality Charity.
I started writing this blog in 2019 to help empower people to be proud of their differences whatever they may be. These differences should never stop people doing what they most want to do. I know that I am extremely fortunate to be able to find a way of doing almost anything I want despite my cerebral palsy (just let me know if you want to learn how to walk like a pigeon I know it is very much on trend at the moment). This is not the case for a lot of other people. These people have huge amounts to contribute to society but are stopped due to the attitudes of other people and the prejudices they face daily. This is why I feel the need to support Scope.
Scope are an incredible charity who want to achieve a society where all disabled people enjoy equality and fairness. They provide practical advice and emotional support whenever people need them most. They use their collective power to change attitudes and end injustice. They campaign relentlessly to create a fairer society.
So if you need a chocolate hit to cheer up these darker evenings and satisfy those cravings, place please help me support such an important cause (or you can ask me to send a box to a friend). I cannot guarantee I won’t burn myself in the process but it’s a risk I am willing to take (have a read of my earlier blog cooking here: yasmindenehy.home.blog/2019/10/22/cooking/ for some other kitchen related injuries I have achieved).
So let’s assess the options – keeping everyone happy is hard work so hope you like the sound of one of the below:
Raspberry and White Blondies
Vegan Double Chocolate
Gluten Free Chocolate
Brownies will be delivered in boxes of six. I will bake brownies over weekends and dispatch them on Mondays for delivery via Royal Mail.
Minimum donation: £10 per box and all profits will go to Scope.
Scars are there to tell a story (even if it is one that I don’t remember!)
The issue I face is that I don’t put two and two together, when I fall I just get up and keep going, I don’t think about the consequences and the fact that the cuts and bruises I have gained are going to be painful, they are going to take time to heal and they will most likely result in another beautiful cracker to add to my ever growing collection of scars criss-crossing all over my body. I just march on through a minefield of brambles and nettles without thinking twice of the disaster this will make of my shins, who doesn’t love a few scratches to pretend they have been ravaged by a savage cat!
My emotional or not so emotional response the scars that I have goes up and down (a bit like the dodgy roads and tracks that are responsible for them!) At times I honestly couldn’t care less about them (usually when I haven’t fallen for a while so everything is still in one piece) at these times everything feels top dollar and the scars I have are just there, part of me nothing I can do about it sorry pal.
At other times (normally a few days after I have fallen and taken a chunk out of my leg or arm), it dawns on me that this latest addition is going to stop me running for a few days (this is because the terror of falling again on my open wounded knee is too great, it’s like the fear of giving your friends some really severe food poisoning when they are brave enough to try your latest creation. Also, this latest injury is going to take its sweet time to heal. I also realise that hang on, as I have managed to get a pretty impressive gouge, that impact will probably also have some decent bruising along with it (like a really shocking 2-for-1 deal) so then with the bruising it is like my body has created its own army camouflage (I mean it is pretty rubbish as it doesn’t help to hide the heal wound or scars).
Recently for me after a particularly bad spell of cumulative injuries from multiple falls, I have had enough, I have just got fed up of the appalling state of my arms and legs. On more occasions than I can count I have discovered a new scar or bruise that I just have absolutely no clue how I have got them all over the place. It just frustrated me as I realised these scars really weren’t going anywhere and would stick around for the long haullike that One Annoying Uncle (OAN) who just hangs around after Christmas so somehow he is still in your house in February, I mean come on you must have got the message now OAN it is time to jog on. So much so that I just haven’t dared to go any faster than walking for fear that I trip fall and go back round to square one. As a result of my lack of running, I am in pretty good shape wound wise, currently no scabs or bruises. It feels like I have developed my own version of Would You Rather? Run, fall, wound bruise, scar or don’t move, stay upright? It’s chaos for my head-like and Eternal Brain Earthquake (EBE). When the EBE gets going there is just no chance-whichever side of the great divide you choose is going to end in disaster so I suppose you may as well enjoy the ride.
I think this is what I am slowly coming to realise. Yes, my scars annoy me (even more so when I pick up a bit of a tan and they stand out even more (I look like the man painting the zebra crossing was absolutely drunk off his rocker and has no clue what a straight line is- I am just a giant Wonky Zebra Crossing)-even better when I have to show off these crackers to more of the world whilst I wear my shorts and strappy tops in the warmer weather. But my scars are prove there to me that I can do hard things (well maybe not hard things as everyone else makes their daily 5km run look like a breeze) but things that I find hard. They prove to me that I am able to push myself (as I fall more when I am tired). Of course the ideal situation would be to do these things without going flying, but you know what, this is not going to happen. If I want to challenge myself I will fall but the point is I get back up and keep going. They prove to me that my body is amazing. It lets me get out and prove to myself and everyone else that it is possible. It is better to live my life and do these things that are hard rather than living in fear and wrapping myself in cotton wool. Also because that would be exceptionally hot so I would become a Very Slimy Cloud (VSC) (this is definitely worse than a few scars-nobody would like to see that I think the recent heat wave has proven that sweat/slime is not a good look). So moral of this weird and wonderful post is go for the Wonky Zebra Crossing over the Very Slimey Cloud.
Something a bit different from me but this is the best method I have found for cheering myself up when I need to laugh. Turn up the volume and put on a good tune. I heard this song whilst out running recently and the lyrics really resonated, despite being knackered at the end of my run I was singing along having the best time (sorry to all the local residents I woke up with my beautiful out of breath singing).
As the song says we all have to do what makes us happy even if it is different to what others may do. I know I look like I have been hitting the Jägerbombs too hard on a Friday night (I haven’t had a single drink unless water counts). I am definitely no Beyoncé when it comes to my dance moves. This is me dancing, having the best time and loving life so I couldn’t care less if others think I look stupid. This is my time to #BeLikeYazzi.
I want to use this platform to celebrate everything that makes us unique. All those amazing things that make us diverse, special and crazy human beings. Hopefully I can make you laugh along the way. What is your #BeLikeYazzi moment? Let me know in the comments below.
I have touched on this previously but wanted to go a bit deeper as it is something that has been increasingly frustrating me recently. Be prepared for some word vomit coming up! With all this spare time on our hands during lockdown, I have been spending more time on social media (as I am sure many people have). I follow all these incredible individuals enjoying fitness and being part of the fitness community online. People on Instagram have formed friendships through their common interests and love of fitness online. I don’t see how I fit in and it is not just online but in real life too. I really enjoy fitness but don’t feel that I can use this as a way to make friendships. I feel I have to do all exercise on my own. This is because if I do it with fully able-bodied people, I end up feeling like useless and down as I am not as capable as them as my Cerebral Palsy (CP) prevents me from keeping up with them.
Running: Nope, I can’t join the local running club: I cannot run as fast as my friends who are runners (or even those who aren’t). I even have to say no to them suggesting I do a slow 5k – I just know that I won’t keep up and will end up feeling rubbish. Yes, this may be down to my stubbornness and competitive nature that I want to keep-up, but I always find it disheartening to know that I am holding others up. Dad recently made me join him on his run and I felt under intense pressure to keep running faster than him as I would feel such a failure if I had to go at his pace. There is nothing wrong with my Dad’s pace of running but it is because I know that my brother and friends would all easily run faster than Dad so I felt I have to follow suit to prove it to myself.
Strength and Weights: nope, I don’t fit in here either. I struggle to stay upright and manage a squat without wobbling all over the place and falling over. When doing squats, we are always told to keep our knees over our toes, well mine are nowhere near my toes for two reasons, firstly my knees barely bend as my leg muscles are tight so I don’t go very low into a squat at all. Secondly, the pigeon comes out in me and my knees just go inwards so are nowhere near my toes anyway. If my basic squat with no weights is such a shambles, what on Earth am I supposed to do when adding weights to the scenario – it is just a nightmare. There is no hope of hitting a Personal Best here for me. I distinctly remember being in a Body Pump gym class, using barbells, where the instructor suggested I abandon the barbell to work on ensuring my form was correct when squatting. I know this is sound advice but didn’t do much for my self-confidence as the weights were the whole point of the class.
Circuits: It just takes me eons to get through one burpee – you guys go ahead without me and I will just crack on by myself alright. I don’t need your smug faces while you rest and are waiting for me to struggle through the set taking my own sweet time.
Tennis: One. Word.Mortifying. Let me explain. When I was younger, my family would coerce me to play in doubles matches. I felt under so much pressure as I know that every shot my partner lets me attempt will end in disaster. On top of this, my poor partner is legging it all over the court to make up for the fact that I cannot react and move quickly enough to play the shots. I dread the point at which it is my time to serve. These games always end with my team losing due to the shocking number of double faults I manage to perfect and all eyes are on me whilst I make a fool of myself. I just want the whole thing to be over. I just feel so bad for my partner as being stuck with me is a guaranteed loss.
Skiing: I have too many horrific memories of ski school aged 14 when I was in a class with bloody annoying 5 year olds. I cannot put myself through the pressure of skiing with friends who I know are good skiers. My self-belief will just nose dive like me bum skiing down that mountain. My only option is to ski with friends who have not skied previously, however, this terrifies me; when skiing with my family they know how hard to push me and my limitations but I am scared that skiing with first time skiing friends I would lose control, have a bad fall and give my friends a difficult situation to cope with.
I think I would be happier if those around me were of a similar ability to myself so I didn’t always feel like the worst one, the issue is that this is difficult to come by. This blog has been amazing to allow me to connect with others with CP. However, due to the massive range of ways that CP affects ability, I struggle to find my tribe in the CP fitness world. I struggle to find others like me out there to aspire to. It is either Paralympians (as much as I wish this was the case I am definitely not at their level yet), or more often the individuals and blogs I have found are either written & run by the parents of severely affected children or adults with more severe CP. Trying to research fitness for those with my level of CP is like searching for a needle in a haystack. All the articles I read are research papers aimed at children with severe CP which is not applicable to me. Is this a problem anyone else has encountered?
As I don’t feel that I am left with many options, I guess I will just have to #BeLikeYazzi. It is our differences that make us unique. The most important thing is that despite all these mental barriers around sport and fitness, I have found that you can still get stuck in and move in a way that you enjoy even if it is not the same way as everyone else may be doing it. But that said if anyone reading this is facing similar issues around ability and fitness (or knows someone who is), let me know in the comments and we can come together in our diversity.
With all the craziness going on in the world, I thought it would be good to share some of the positive responses I have had to my blog and some of the other inspirational accounts I have found online having started my blog.
I have been overwhelmed with the positive response to my blog and am so glad it has been able to help so many people both those with CP as well as fully able bodied people. The global response has been incredible and I am amazed that it has had such a wide reach. Below is a map of my readership (can you tell my Dad another Geographer suggested this blog-he had to get a map in there somewhere).
I cannot believe it has been read by nearly 5,000 people from over 50 countries. (My Dad has said I should add that these are just the people who have read my blog on the WordPress platform and that many, many more people will have read via Social Media – so I don’t know the real number of my blog fans!)
A note to say here is the map shows the views so I reckon everyone clicked on the blog page, saw my face and ran a mile!
The other amazing thing is that my blog has given me the opportunity to connect with other people who have CP. I have had responses from people all round the world, one of the most unexpected & nicest was from a man living in Pakistan with CP.
Through my blog I have also discovered & connected with a number of other inspirational CP, mental health and disability blogs/ platforms some of whom have asked if they can add links to my blog.
Let’s reset is an online platform and community aiming to increase the importance of mental health in the workplace. My blog has been featured on their website.
Fifi and Mo: Finley is a young girl with CP who has now become famous through her Instagram page created by her mother Christina. Finley and Christina raise awareness of what it is like to bring up a child with cerebral palsy Finley has featured in advertising campaigns for Target in the US so increasing the diversity of children represented in the media.
Emily Nicole Roberts: Emily Nicole has such a positive attitude to life despite her CP and shows you through her You Tube and Instagram how it is possible to do anything you put your mind to. As she says: “I want to change lives by filming mine”. She has been designing and creating a wheelchair aid to help others and herself as she encountered a problem which she wanted to overcome. As she said “I want to use my life as an example and I want to use it to inspire people”. “I want to be a positive force in peoples life and change disability”.
Josh Llewellyn-Jones: Josh suffers from cystic fibrosis. He was given a 10% chance of surviving his first night. He is now 32 a World Record Holder, Ultra Athlete and motivational speaker. He founded CF Warriors to “raise awareness of the importance of sport & exercise to every member of the CF community.” The aim is to “motivate, inspire and support children on their journey to a longer, happier and healthier life.”
Olivia Breen: Olivia is a Paralympic runner and long jumper with CP. I find it fascinating to see her approach to life and her training. I have found it inspiring to see her determination as an athlete. She is definitely a role model for me with my running to prove what it is possible to achieve despite her CP.
Someone commented on my last post and suggested I watch this inspiring Ted Talk from Aimee Mullins-a double leg amputee.
When I started writing my blog I had no expectation that anyone would be interested in reading it so I have been amazed by the interest and responses, each time someone says something positive or shares my blog it inspires me to keep writing. I hope these individuals I have shared inspire you as much as they inspired me. Leave a comment below with any other individuals that inspire you and let’s share the power of connection.