All things lockdown!

Well, hasn’t it been a very strange few months? Lockdown has certainly brought a lot of uncertainty for us all, as well as a lot of disruption. Surprisingly, this is actually my first time blogging this year. Despite the pro-longed period at home I have been twice as busy as normal with double the number of people wanting to access CP Teens UK’s services. If I am being honest, even though I have gone to bed some nights absolutely exhausted, it has definitely kept me occupied and my mind focused during lockdown. It has also been so nice to help others throughout this very strange period – we have all been stuck at home and it has been wonderful to be able to make a difference just from my kitchen table!

The main difficulty I have found with lockdown is that my already reduced independence has been reduced even more – I am fiercely independent and I don’t like to rely on my parents at the best of times, so lockdown has proven to be a challenge for me in terms of not being in control of what I can do independently on a day-to-day basis.

It is ‘stupid’ things like getting taxis by myself and meeting friends. Don’t get me wrong, I know that no one has been able to do this, but this was and is the extent of my independence – I get my independence from things away from home and I also have a PA, so as I have been at home for the past four months I’ve missed this independence. By nature I am also very outgoing and I get ‘cabin fever’ very easily, so this has also been a challenge for me!

'Out out' with Chloe last summer!

As lockdown eases, firstly I pray that we continue to make good progress and don’t go back into lockdown. Like a lot of people I dread the idea of another lockdown, but I appreciate it was, and it might be again, a necessary evil. Secondly, I have noticed how disability friendly this ‘new normal’ is! For starters, everything is at a slower pace. Personally I don’t have too many issues with the normal pace of life, however I know a lot of people with disabilities who do and I do struggle physically in very busy and crowded places. The slower pace of life combined with the restrictions on numbers of people and the social distancing rules is turning out to really serve a lot of disabled people.

You now have to book a table in a pub or a bar, even if you only want a drink, and it is seated only. I have lost count of the number of times I have had to leave a pub or a bar because I was unable to find a seat prior to lockdown - due to my Cerebral Palsy I struggle to manage without a seat for any length of time. I also cannot hold my drink in my hands (unless I have had a few and I get a false sense of confidence & my abilities, haha!) so a table is also very handy. In this ‘new normal’ I am guaranteed both and it is wonderful! Not only this but also it is table service everywhere meaning that if I was to go somewhere with a friend who also has Cerebral Palsy we don’t have to think about going somewhere where we know beforehand definitely does table service – it can get very interesting trying to carry drinks across a bar! And of course because we are in a bar, people’s first thoughts are that we must be drunk so 9 times out of 10 no one offers to help!

I look forward to going out and having a few drinks in this ‘new normal’ soon! One thing I have done in this ‘new normal’ so far is shopping. This is also much more disability friendly post lockdown. For starters, shops do not get busy and overcrowded due to the restrictions on numbers of people allowed inside at any one time and social distancing rules. It gives me much more room to ‘wobble’ about and it is actually much better for my startle reflex – there’s much less movement and people for me to jump at! My startle reflex has actually got a lot worse during lockdown as I have not had the stimulation from the outside world going on around me – noises such as emergency vehicles always made me jump, but at the moment they are making me fly up into the air and I am practically orbiting the earth whilst I am up there!

Lockdown has made me appreciate what is important to me. I have noticed since I haven’t been able to RaceRun nearly as much as I do normally as well go to the gym, my balance and coordination have took a direct hit. I am falling over quite a bit in the house which hasn’t happened for years. As well as realising how much I love competing and being on a track, I have realised how important it is for me to keep up my RaceRunning beyond my competitive days. I can’t wait to be back on a track – it will be peace of mind for me both competitively and for my day-to-day physical wellbeing.

RaceRunning at my best!

I have also really enjoyed my weekly sessions with CP Sport and getting involved with their activities like the ‘At Home Superhero Challenge’. CP Teens UK and CP Sport have been putting on (and still are!) weekly ‘Coffee & Chat’ sessions via Zoom. Although I have been co-hosting as CP Teens UK, I have got a lot of personal enjoyment out of these sessions too and it has been nice to connect with the people I would usually be sat with on the side of a track at this time of year as well as other young people and athletes with Cerebral Palsy. I am also an Ambassador for CP Sport, so in one session I also spoke about my journey in RaceRunning so far and hopefully inspired others to give it a go

'At Home Superheroes' with CP Sport

Talking of RaceRunning, I have been able to share my love of the sport with a young boy called Tobias during lockdown. Tobias is nine years old and has Cerebral Palsy. I first met Tobias when I was on my University placement at Sheffield Children’s Hospital in 2016. For those of you who don’t know I did a degree in Sports Development with Coaching at Sheffield Hallam University and I did my placement delivering RaceRunning and adapted sports within Sheffield Children’s physio department. When I met Tobias he reminded me a lot of my young self – shy yet curious, a bright button and determined. Tobias stood out to me and I knew one day he would do wonderful things, so it was of no surprise to me when he decided to complete a marathon using his walker during lockdown! Tobias completed his marathon with the world watching and raised over an incredible £100,000!

With Tobias not content to stop at one marathon, his mum, Ruth, contacted me about RaceRunning for him – she was hoping to get Tobias to try it with CP Teens UK as we are based locally to them following lockdown. I actually store some of the CP Teens UK RaceRunning frames at my house so I checked that I had Tobias’s size ‘in stock’ (I did!) and I said to Ruth they didn’t need to wait, I had one that Tobias could use now! So, Captain Tobias (inspired by Captain Tom Moore!) came around to mine with his mum and picked up the RaceRunning frame. A week later, once the frame had been made comfortable for Tobias (they aren’t half uncomfortable when you first start out/they’re not set up right for you, let me tell you!) he launched his second marathon and Tobias called it the ‘TOBIATHOLON’ – 2 disciplines, 1 boy!

He is doing so well on the RaceRunner and I cannot wait to see Tobias finish his second marathon! RaceRunning is just one focus area of CP Teens UK, but to see Tobias get so much enjoyment, achievement and opportunity out of the equipment absolutely sums up why we buy the running frames. Captain Tobias - I salute you!

Captain Tobias!

Also in lockdown, I have realised the true value of CP Teens UK. Before COVID-19 I knew how important it was and I was so passionate about it, but I don’t think I realised the true value of it if that even make sense? I have had time to talk even more with all of you and get to know you even better than before. The sense of community and togetherness has been incredible even though obviously we have very much been apart. I have seen words and phrases such as ‘family’, ‘together’ and ‘grateful’ on the chat group throughout the weeks. We have also welcomed many new young people during lockdown – due to people being at home for a prolonged period of time with lots of time on their hands, they have found CP Teens UK and got involved. I truly believe that CP Teens UK has grown and developed during this very strange and lonely period and is coming out the other side even bigger, better and stronger than before. I am truly gutted but this year’s Ball had to be cancelled due to COVID-19 because I think it would have been the biggest and best party yet following lockdown and how everyone has connected and stayed together online. However, safety and health comes first, and the ‘fat lady hasn’t yet sung’ because the Ball will now take place on Saturday 27th of March 2021… the party WILL happen, just at a later date

As for now, it is important we maintain vigilant & safe (no, this is not a party political broadcast, haha!) and keep making progress to defeat the virus. As we slowly return to normal, maybe it’s a good time to reflect on our lockdown and how we can make the ‘new normal’ work for us as young disabled people. It has been a long slog for us all, especially those who have been shielding and those who have had support and help took away from them. Lockdown has proved challenging for everyone and the ‘new normal’ will bring challenges too – remember there is always a way around everything and in challenges you can often find solutions, which sometimes turn out to be easier than the original way of going about something.

Remember stay safe, keep in touch and get involved – we have a lot of virtual events and social activities going on!