At the beginning of 2020, I published a Wellspring Information Booklet and a leaflet about Wheely Wonders to share the work that we do with more families. We were really looking forward to seeing everyone in the spring. In February and March I met students at the University of Chichester, talking about My Educational Journey and encouraging them to be inclusive in their teaching. Some of them were very keen to volunteer at Wheely Wonders.
As the news about Covid got more worrying, I reluctantly decided to stop going in to work as a teaching assistant two weeks ahead of the official lockdown. I was also really sad that I had to shut down my Spring Craft Club which had started so well with some lovely new children. Our Wheely Wonders dates also had to be cancelled.
At first it just felt as if I was on an extended Easter holiday and the weather was incredible! We felt so lucky to live at Applefield with so much space and fresh air so having to stay at home was not bad at all! I recorded a video message for the Wellspring website sharing news about updates to the website and over the course of the spring and summer I added photos and films, featuring our lambs being born and chicks hatching. I really missed working with children at school and here, but I packed up Easter crafts for the children who missed the rest of the Craft Club, and also posted packs to friends around the country! I also made Halloween and Christmas craft packs which I sold locally in aid of Wellspring.
I stopped having my weekly physio last March, but I continued to do my daily respiratory exercises with several tools for keeping my airways open. A lockdown activity I really enjoyed was singing with Gareth Malone’s Great British Home Chorus on YouTube; the warm up exercises were another great way to give my lungs a good work out. I kept a daily record of my oxygen saturation and heart rate using my Oximeter which reassured me that I was keeping my levels stable.
In May, I watched a Channel 4 news report about the work of some of the incredible staff who were working to treat very unwell patients with Covid-19 in ICU at the Royal Brompton Hospital in London who help me to keep strong and healthy with my BREAS ventilator I use overnight. The team also looked after Alexandra (my sister who also had CMD and died in 2015) and some of my friends are patients too.
I had started swimming in our small outdoor pool at the end of April so I decided that I would take on my Swimming Challenge to raise money to help the hospital get the vital equipment they need to help patients with Coronavirus. I have always loved being in warm water and hydrotherapy is a great help for people with Muscular Dystrophy, so it was a perfect way to get my daily exercise while I could only see my physios on Zoom! Our pool has moved house with us 3 times and is now part of our smallholding; we love swimming with all our animals looking at us!
Every day (weather permitting), I did my hydrotherapy exercises which I made up myself during my half hour in our pool. These really helped me keep my body healthy, especially my respiratory system! I was inspired by a little girl called Carmela who, like me has Congenital Muscular Dystrophy (www.carmelasstanduptomusculardystrophy.co.uk)
- she shows such strength and determination in her daily physio! I decided to do 100 swims and started off with an initial target of £150 – this was smashed in 48 hours so I was able to raise the bar quickly and with so many friends and family supporting me, it was incredible watching the money coming in!
The summer weather really helped so I was able to swim practically every day (even in a rain storm and a gale!) and I reached Swim 100 on 31st August. We had family visiting for the bank holiday weekend so it was extremely motivating to have “cheering crowds” as I crossed the finishing line with an incredible total of £3320! This would buy one of 20 IntelliSpace Critical Care and Anaesthesia (ICCA) systems needed to centralise the clinical data of a critically ill patient through connected technology. These help to better manage patient deterioration and aid faster and more accurate treatment.
I was so surprised and delighted to find out on 23rd June that the Prime Minister had chosen me for a Point of Light Award for my Swimming Challenge, and work for Wellspring West Sussex which I have been involved with since 1999. I felt very honoured to receive this Award for doing things that I love so much! It was very exciting to be interviewed for Spirit FM and talk live on BBC Sussex about the award.
It was wonderful to be reunited with my brother and family in June as well as being able to see other people again. In August, I met up with Jen and Sam for a socially distanced lunch in our field and we decided it was a safe time to have a Wheely Wonders Wellbeing Day funded by The Headley Foundation.
A couple of weeks later it was wonderful to see familiar smiling faces arriving; many not having been away from home since March. It was a fantastic day and despite the pouring rain everybody was so cheerful and made beautiful, bright pipe cleaner flowers as well as other Forest School crafts and toasting marshmallows on the campfire.
In September, I had to cut my swimming season short as my father was unwell and underwent emergency surgery for a bowel tumour. We were relieved to receive a phone call from the surgeon to tell us he had removed it successfully, then later in the afternoon a text from Daddy announcing “I’m alive”! We were well supported at home by family and friends and some agency carers, for me and for Daddy. It was quite a long recovery through to mid-November as Daddy’s scar erupted twice, resulting in two more stays in hospital.
Since July, I have been working with Social Services to have a working hoist and tracking from my bedroom to the bathroom. This has been a long process, getting a profiling bed and a sling that is the right size for me and was extra complicated as I am a child size but under Adult Services so everything has to go through extra “hoops” and “red tape”!! In January the new tracking was installed and I finally got my access sling. Having never been hoisted before, this was a huge learning curve for me and my parents and we have had many frustrating and funny moments with Velcro belts getting stuck to wooly jumpers, straps getting twisted and the hoist trying to pick up my whole Permobil when we had failed to get my chest belt out of the way! It is now a normal part of my day and I know that once I can start having more PAs it will make everything much easier.
When school started in September, I was very pleased that my Head arranged for me to continue teaching from home via Microsoft Teams. My work PA continued supporting me with Year 5 and 6 children in school who I worked with on reading comprehension. I have worked with Year 5 key worker children through the winter lockdown and one of the other TAs in school has been helping me as it wasn’t safe for my PA to be there. I really enjoy online teaching and the children have adapted well to a different style of working. I am hoping I can return to school after I have had my second vaccination; I think I will find it quite strange but I am also looking forward to being away from my computer screen!
As I write this, there is hope on the horizon as we watch spring bursting out everywhere and our daily walks feel a bit warmer! We have got to know so many of our neighbours through the year which has been a real bonus. We also have Wheely Wonders dates on the calendar for the end of April! I have kept up my work with the University of Chichester and have found more students who are eager to come and join in the fun. Jen and I are so excited about welcoming families once again; I have been keeping in touch with some of them via Facebook all year. It has been fabulous to see how, despite the difficulties children have been able to achieve great things! I am also looking forward to getting back in the pool again and my current project is researching pool hoists! My dream is to have a telescopic roof over the pool so I can continue my hydrotherapy for longer!
Lizzie Baily 2021
As the news about Covid got more worrying, I reluctantly decided to stop going in to work as a teaching assistant two weeks ahead of the official lockdown. I was also really sad that I had to shut down my Spring Craft Club which had started so well with some lovely new children. Our Wheely Wonders dates also had to be cancelled.
At first it just felt as if I was on an extended Easter holiday and the weather was incredible! We felt so lucky to live at Applefield with so much space and fresh air so having to stay at home was not bad at all! I recorded a video message for the Wellspring website sharing news about updates to the website and over the course of the spring and summer I added photos and films, featuring our lambs being born and chicks hatching. I really missed working with children at school and here, but I packed up Easter crafts for the children who missed the rest of the Craft Club, and also posted packs to friends around the country! I also made Halloween and Christmas craft packs which I sold locally in aid of Wellspring.
I stopped having my weekly physio last March, but I continued to do my daily respiratory exercises with several tools for keeping my airways open. A lockdown activity I really enjoyed was singing with Gareth Malone’s Great British Home Chorus on YouTube; the warm up exercises were another great way to give my lungs a good work out. I kept a daily record of my oxygen saturation and heart rate using my Oximeter which reassured me that I was keeping my levels stable.
In May, I watched a Channel 4 news report about the work of some of the incredible staff who were working to treat very unwell patients with Covid-19 in ICU at the Royal Brompton Hospital in London who help me to keep strong and healthy with my BREAS ventilator I use overnight. The team also looked after Alexandra (my sister who also had CMD and died in 2015) and some of my friends are patients too.
I had started swimming in our small outdoor pool at the end of April so I decided that I would take on my Swimming Challenge to raise money to help the hospital get the vital equipment they need to help patients with Coronavirus. I have always loved being in warm water and hydrotherapy is a great help for people with Muscular Dystrophy, so it was a perfect way to get my daily exercise while I could only see my physios on Zoom! Our pool has moved house with us 3 times and is now part of our smallholding; we love swimming with all our animals looking at us!
Every day (weather permitting), I did my hydrotherapy exercises which I made up myself during my half hour in our pool. These really helped me keep my body healthy, especially my respiratory system! I was inspired by a little girl called Carmela who, like me has Congenital Muscular Dystrophy (www.carmelasstanduptomusculardystrophy.co.uk)
- she shows such strength and determination in her daily physio! I decided to do 100 swims and started off with an initial target of £150 – this was smashed in 48 hours so I was able to raise the bar quickly and with so many friends and family supporting me, it was incredible watching the money coming in!
The summer weather really helped so I was able to swim practically every day (even in a rain storm and a gale!) and I reached Swim 100 on 31st August. We had family visiting for the bank holiday weekend so it was extremely motivating to have “cheering crowds” as I crossed the finishing line with an incredible total of £3320! This would buy one of 20 IntelliSpace Critical Care and Anaesthesia (ICCA) systems needed to centralise the clinical data of a critically ill patient through connected technology. These help to better manage patient deterioration and aid faster and more accurate treatment.
I was so surprised and delighted to find out on 23rd June that the Prime Minister had chosen me for a Point of Light Award for my Swimming Challenge, and work for Wellspring West Sussex which I have been involved with since 1999. I felt very honoured to receive this Award for doing things that I love so much! It was very exciting to be interviewed for Spirit FM and talk live on BBC Sussex about the award.
It was wonderful to be reunited with my brother and family in June as well as being able to see other people again. In August, I met up with Jen and Sam for a socially distanced lunch in our field and we decided it was a safe time to have a Wheely Wonders Wellbeing Day funded by The Headley Foundation.
A couple of weeks later it was wonderful to see familiar smiling faces arriving; many not having been away from home since March. It was a fantastic day and despite the pouring rain everybody was so cheerful and made beautiful, bright pipe cleaner flowers as well as other Forest School crafts and toasting marshmallows on the campfire.
In September, I had to cut my swimming season short as my father was unwell and underwent emergency surgery for a bowel tumour. We were relieved to receive a phone call from the surgeon to tell us he had removed it successfully, then later in the afternoon a text from Daddy announcing “I’m alive”! We were well supported at home by family and friends and some agency carers, for me and for Daddy. It was quite a long recovery through to mid-November as Daddy’s scar erupted twice, resulting in two more stays in hospital.
Since July, I have been working with Social Services to have a working hoist and tracking from my bedroom to the bathroom. This has been a long process, getting a profiling bed and a sling that is the right size for me and was extra complicated as I am a child size but under Adult Services so everything has to go through extra “hoops” and “red tape”!! In January the new tracking was installed and I finally got my access sling. Having never been hoisted before, this was a huge learning curve for me and my parents and we have had many frustrating and funny moments with Velcro belts getting stuck to wooly jumpers, straps getting twisted and the hoist trying to pick up my whole Permobil when we had failed to get my chest belt out of the way! It is now a normal part of my day and I know that once I can start having more PAs it will make everything much easier.
When school started in September, I was very pleased that my Head arranged for me to continue teaching from home via Microsoft Teams. My work PA continued supporting me with Year 5 and 6 children in school who I worked with on reading comprehension. I have worked with Year 5 key worker children through the winter lockdown and one of the other TAs in school has been helping me as it wasn’t safe for my PA to be there. I really enjoy online teaching and the children have adapted well to a different style of working. I am hoping I can return to school after I have had my second vaccination; I think I will find it quite strange but I am also looking forward to being away from my computer screen!
As I write this, there is hope on the horizon as we watch spring bursting out everywhere and our daily walks feel a bit warmer! We have got to know so many of our neighbours through the year which has been a real bonus. We also have Wheely Wonders dates on the calendar for the end of April! I have kept up my work with the University of Chichester and have found more students who are eager to come and join in the fun. Jen and I are so excited about welcoming families once again; I have been keeping in touch with some of them via Facebook all year. It has been fabulous to see how, despite the difficulties children have been able to achieve great things! I am also looking forward to getting back in the pool again and my current project is researching pool hoists! My dream is to have a telescopic roof over the pool so I can continue my hydrotherapy for longer!
Lizzie Baily 2021
