Below is a first hand personal account by Myles Sketchley our Intern on his individual experiences and emotions as a young disabled man during the last six months. It is a true and honest prospective of the social isolation and impact it has had on the lives of our young people and families who continue to shield.
Lockdown, shielding and beyond…
I am still shielding!
I am writing this to give you all an update on how I am coping now that the national lockdown has been lifted.
During lockdown, I was told I had to shield in my home with only my parents; we had to have our shopping delivered and left outside, I wasn’t allowed to meet up with my family or friends and I couldn’t go anywhere. Everyone was in the same situation, I felt fortunate that I had a large garden that I could sit outside in safely.
When the lockdown was lifted, people started to go out, they went to shopping centres, parks, garden centres, restaurants and met up with their loved ones they hadn’t been able to see. I however, haven’t been able to do many of those things! Due to my health, I’ve still been very careful and shielding from others. I’m not allowed to hug my sister or my grandparents, I have seen them but on opposite sides of my garden or through the window and it just isn’t the same. On 1st August 2020, shielding paused, this was the week of my birthday so I was able to see my friends and family from a safe distance. It was my 21st, all I wanted to do was give the people I love a BIG thank you hug or kiss for my cards and gifts. It was very hard for me, I was really thankful for all the things I was given, but I felt like I couldn’t show my appreciation, the words ‘thank you’ just didn’t feel enough.
As people started to go out more and went to back work, I didn’t feel good being stuck inside, staring at the same four walls and watching TV over and over again. We are a very ‘out-and-about’ family and having to shield was really restricting what we could do, there’s only so many times you can watch your parents mow the lawn, cut the hedges, hang out the washing and feed the chickens. I needed to get out my house and garden and see something different. I felt like I was going a little bit crazy! We packed a picnic, got in the car and drove to a park. We didn’t get out the car but I sat and watched people walk by, I saw children running around and playing in the fresh air. We sat there and had our food and drink and watched the world go by, it felt so ‘normal’ but I couldn’t be included in that ‘normal’ world, it wasn’t safe to get out the car because there was too many people around and I wouldn’t be able to keep a safe distance between them and me. We’ve been out for a drive a few times when we felt like we needed to escape the house, but I’ve only managed to get out the car a handful of times and this was sometimes cut short because of the weather or places getting a bit busier so we didn’t feel safe and able to keep a good distance between us and others.
I managed to arrange to meet my 1 to 1 with her new baby at Rufford Abbey Country Park; we got there for opening so there wasn’t many people around, we walked around the lake keeping 2 metres distance between us at all times; we fed the ducks and headed to the café for a quick drink. I sat outside the wall of the courtyard where the café is, so nobody came near me, Mum and Rachel (my 1 to 1), went inside to get our drinks. When they came back, Mum transferred our drinks to our travel mugs from home and Rachel and Baby Ellie sat at a different picnic bench so we could still talk but safely away from each other. It felt strange not being able to touch Baby Ellie, it made me a bit sad, but I know it was for the best. Once we finished our drinks, we had to get back into the car, the weather was nice so more people were coming into the car park with their family for a nice day out at Rufford, which meant I had to leave.
I’ve been to a few places and managed to get out the car for a little wander. My favourite was Flamborough Head beach, we had the whole beach to ourselves; we sat and enjoying biscuits and a drink and watched the tide come in and go out again. It was great being in the fresh sea air! I felt a bit sad when we sat there because it reminded me of the holiday we had booked for my 21st birthday to Portugal. It was in a special adapted villa with a wheelchair accessible car and an amazing pool; but this all had to be cancelled, this was a private hire and my mum is still battling to get her money back from the owner and is now having to go through our travel insurance to try and get it back, but it still isn’t sorted. This makes me sad too.
After summer, when I was meant to get back to work, I wasn’t able to have Rachel at home to assist me with my Strongbones work, we’ve had to continue doing it all through Skype online video chat. I much prefer how things were before lockdown, Rachel would come to my house and we would work together on one iPad, now we are doing things from our own homes and it is much more tricky. Rachel has to keep flicking between share screen and normal view to show me what she is looking at. Also, she has to work on one tablet while having me on Skype on her phone, this is because Skype kept crashing as we were doing so much on one device it kept cutting off the call. It made me quite stressed having to keep calling her back when it cut out, sometimes it was funny though because Rachel kept grunting and moaning at her phone and I couldn’t help but laugh! We have managed to plan lots of exciting things in the pipeline, as soon as we’ve secured funding, we will be rolling these out, so keep an eye on the Strongbones social media pages for more information!
For my birthday, I was given an outdoor cinema, it’s amazing! My Dad puts up the screen and sets up the projector ready for the viewing. I was also given a personalised cinema sign, cosy blankets, a popcorn machine and a slush puppy machine with personalised drinking cups; this way, I can have the whole cinema experience in my back garden. I feel extremely lucky and happy to have all of these amazing things that I can use so I don’t feel like I’m missing out, I used to go to the cinema once every two weeks with my 1 to 1. I was really looking forwards to inviting a few of my friends around for a cinema night, unfortunately the ‘Rule of 6’ was bought in yesterday (Monday 14th September) which means it is illegal to have more than 6 people inside or outside at once. This rule cancelled my plans to invite my friends around as there is already 3 people at my house, me, Mum and Dad. I would only be able to invite one friend around with their parents otherwise we would be breaking the law!
I also used to go to my sister’s house once a week to have tea and play games, I really miss going to Lauren’s, I miss seeing my sister and James and being in a different environment with different people. If I want to see Lauren now, she has to come onto the back garden or come inside but keep her distance and wear a mask. It doesn’t feel good when Lauren comes, she’s not allowed to touch me or give me a kiss! The last time I cuddled sister was 6 months ago, that’s half a year!
A few weeks ago, I started to get a little bit poorly with a very high temperature, my Mum called the Dr and they put me on stronger antibiotics. My temperature was still high so a GP had to come out to my house to test my temperature, do my blood pressure and SATs. Having the GP in my house made me a little bit panicky, I was keeping away from everyone and she had to come in and actually touch me! While she was with me, she told my Mum that if my temperature went above 37.9 I had to go to hospital, this was a very scary thought, I did not want to go to hospital! We were also told I had to do an At Home test to make sure I didn’t have the virus. Mum ordered the test and Amazon delivered it, once I did it, my sister had to take it to a special post box, and I should have got the results within 48 hours but we didn’t get the results for 4 whole days. This meant from first ordering the test to getting the results it took 1 whole week! (Just to let you know, the results came back negative, I did not have the virus!) This whole situation made me very stressed, we never thought I actually had the coronavirus, but we just had to make sure. The actual test made me feel sick, I was anxious to start with when I was told how it would be done and it felt horrible and was very uncomfortable, but it didn’t hurt, I just didn’t like it!
Having the GP in my house has made me question my flu jab, I am unable to attend the doctor’s surgery due to my health, so the nurse will have to come out to my house to give me the jab. There is currently a waiting list for home visits and I have no idea when I will get it. This makes me even more worried as I am now worrying about coming into contact with people that have colds and the flu. My immune system isn’t really strong enough to fight it like other people’s so I will get ill.
On Friday 11th September, I had to go into Nottingham City Hospital to have an x-ray before I had my Lithotripsy Treatment. When I had my x-ray, I felt a bit unsafe because I had to use the hoist that two people had touched before me, my Mum asked for it to be wiped down but we was told it had already been cleaned before they touched it. Surely it should be cleaned after they had touched it, not before?! Anyway, I had my x-ray then went to the urology centre to wait for my treatment, I had a little wait while a man warmed the machine up. My Mum looked at the x-ray images on the screen and was told that they would not be able to do the treatment on the large kidney stone because it had travelled back up my urethra and to the very top of my kidney underneath my ribcage. If they did the treatment there it would crack my rib for sure! They did the shock waves on the smaller kidney stones this time and said that they would speak to the consultant about the large one and give my mum a ring to discuss it – yep, we’re still waiting for the call… The guy did say that they can wait and see if it moves and x-ray me again, in SIX MONTHS time! By that time, it could have come down and gone back up again or they could all have got bigger! A lot can happen in six months, just look at what’s happened in the last six months! This is something that is constantly on my mind, I was having treatment before lockdown and thought things were going well, then I had to shield so I wasn’t able to have my treatment, now the kidney stones are all too close to my ribs and can’t be treated, and surgery is not an option for me as the risk is too high. So now what?!!
As if being in limbo with treating my kidney stones isn’t enough, my education / social support is being questioned too! We have been advised by the LEA that my EHCP will be ceased at the end of this year. We have fought and battled, long and hard for the last 17 years for my EHCP but it is constantly getting harder to fight because they always give me short term solutions, so we are battling them every three to six months. My Mum spoke to IPSEA and got advice, they told her she could take the LEA to tribunal but because I am doing home/distance learning and it’s very ‘outside the box’, it would be a very hard case to win as they have nothing and no-one to compare it to. We have had to weigh up whether it is worth a battle with them every 3 to 6 months, is it worth it? We are all stressed enough with everything and my health, we don’t need any added stress from a battle with the LEA. My disability social worker who is meant to be supporting me, continues to be on long term sick leave (again) We came to the conclusion that we would be going down the social care route for funding from 31st December 2020 so my EHCP will definitely cease at the age of 21. I don’t think this is unusual, everybody is under the impression that an EHCP will last until they are 25 but it is so difficult to get it to 25 years old. I was meant to have a meeting last week about my funding, but I received an email less than 24hours before the meeting saying it was cancelled (surprise, surprise!) I am still waiting on a date for it to be rearranged to, and even to receive information from someone, (anyone will do,) on an hourly rate for my 1 to 1! I constantly have people telling me what I can’t do in the future and no one giving me options as to what I can do! I feel very stuck, stale and isolated!
With everything going on , we haven’t been able to travel up to Liverpool and this has really upset me. I lost my best friend, Holly, towards the start of the lockdown which meant I wasn’t allowed to go to her funeral. I am so lucky to have been given sentimental gifts from Holly’s family; my favourite is my bracelet with Holly’s fingerprint on. I like looking down and seeing the little charm and thinking of Holly in the clouds. All the gifts I was given mean so much to me and I know I’ll treasure them forever!
After watching the news on TV last night, it sounds quite likely that I will have to go back to full shielding, this means my sister won’t be allowed to come in my house at all, even with her mask on and I won’t be able to see my Grandparents unless it’s through a closed window or video chat. This does make me sad but we have to think of the bigger picture. We’re doing this to protect ourselves and the people we love and care about. It’s going to be a long, hard and pretty boring winter, not being able to meet up with others and see the beautiful winter attractions; but we can, and we will get through this! I plan to light my house up like Blackpool Illuminations, we’re going to put even more lights and decorations up to share the positivity and let people know they’re not alone!
If you’ve managed to read all the way through my blog, thank you very much! Let me know you’ve read it all by posting the hashtag above on your social medias and leave me a comment, I’d love to know what you’ve been up to!
Lots of love, virtual hugs and positivity is heading your way!