Holly Morris
Aviva’s fundraising for the ‘Blue Sunday’ Tea Party For M.E. 2024
Fundraising for Action for M.E.
Story
This year on behalf of our friend Emily Webb, we’re running a bake sale to raise money for Action for M.E. Last year Em was able to run this herself, but this year she has moved into the severe/very severe category, meaning this is no longer accessible for her. Over the last year Em’s health has deteriorated, going from occasionally being able to leave the house, to being housebound, to finally being bedbound at the back end of 2023. Em’s energy levels are significantly lower, and her pain levels higher. Most days now involve blocking out light, noise and avoiding touch. With very limited time spent either with family or friends, or very short spells on her phone keeping in touch with friends. Ems life has changed dramatically, but she still makes time for those around her, her caring nature has always come through. We’ve included some photos with Em's permission of some of the visits we’ve had in later months, including Em friendly coffees, and little mementos of outside. We've also included some photos of what Em's life used to be like before her M.E diagnosis.
Em's Story
Em outlined her story last year, which we’ve included below along with an update on how the last year has changed for her:
I suspect I have had mild M.E. since my late teens. In March 2020 I caught COVID-19 and I have never been able to recover since. I tried to continue with my normal life, as per medical advice: working full-time, dancing, socialising, keeping active, but my health continued to decline. I was experiencing debilitating fatigue, widespread pain and heart palpitations. Fast-forward to March 2022, I had even more symptoms added to that list and was housebound 80% of the time. I couldn't manage the walk to the bus stop at the end of the street and was getting taxis every time I needed to leave the house. By this point, my sickness had incorrectly been blamed on the implant, low B12, depression, anxiety, post-traumatic stress and asthma. A week before diagnosis I was actually advised by a doctor to go for a run!
I was eventually diagnosed and referred to a specialist hospital clinic, but by this point I'd had to move back to my parents for care and was bedbound in a dark room with sunglasses and earplugs on. I had about 6 months off sick from work whilst me and my family did everything we could with the clinic's help to gain any of my function back. I feel very grateful I had so much support from family, friends, and The Yorkshire Fatigue Clinic; I wouldn't have got to the point I am at now without them, and this is not the experience for the majority.
One year on and we're still figuring it out... I think I always will be due to the fluctuating nature of the condition. In terms of my daily energy battery, much like a broken phone battery, mine won't go higher than 15%, no matter how much I charge it. I am now a wheelchair user on the few occasions I leave the house. I have to micromanage my entire life to decide how to spend my daily energy, whilst minimising the energy each task takes. Everything takes energy, from eating food to working from home. If I over-exert then I will pay for it for a lengthy time after (I will suffer after this office trip and bake sale, but it is 100% worth it). I am also doing everything I can to manage my pain and sensory sensitivity, whilst only being able to tolerate an ever decreasing list of 'safe' foods.
I am housebound 80-90% of the time now, but am moving into a council flat in York where I will have more independence with the help of carers and my family. A large proportion of my energy is spent working part-time for Aviva. I am in the same department I was pre-sick leave, but in a much less stressful role and team. I mainly work from my bed with a mini portable desk - I've attached a picture of me in action to really set the scene if you click ‘view gallery’ at the top of the page. I feel very fortunate that Aviva enable me to work flexibly and only do 16 hours a week, with no expectation for office working. Aviva have so many wellbeing resources I use too, including 24/7 counselling services and free private GP consultations online. Using my energy to work gives me a purpose and means I am part of something bigger, that has nothing to do with my condition. This in itself gives me back some energy and reduces the isolation I can experience.”
Fast forward 12 months, and now Em is bedbound, with her last trip outside being an ambulance ride to transfer her back to Bridlington. Over the last 12 months Em’s health has deteriorated, going from being able to leave the house, to being unable to leave her flat, to finally being bedbound at the back end of 2023. In Feb of 2024 Em made the decision to move out of her flat in York, to move back home with her family where she had support throughout the day to help with her increased needs. Nowadays, Em spends most of her days limiting energy usage to the extreme, using multiple aids to remove impacts from her sensitivities from Light, Noise and Touch, with huge amounts of support from her mum, who has become her primary carer. Em uses the small amounts of energy she has to keep in touch with friends and family and touch base with the rest of the world. We’ve added with Ems permission a few photos at the end of the gallery that show what life looks like for Em most days now.
What is M.E.?
'Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological disease that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.' - Action for M.E. site
There is currently no test or cure for M.E.
25% of people with this condition are severe/very severe, and some die due to this illness.
What is the 'Blue Sunday' tea party for M.E.?
Simply have a slice of cake and a cuppa, then donate the price you'd pay in a café to an M.E. charity.
The 'Blue Sunday' tea party for M.E. was created by the amazing Anna (@teapartyform.e on Instagram), who has the condition and was looking for an M.E-friendly way to celebrate her birthday back in 2012, when she was too sick to leave the house or have visitors. She marked the occasion with a virtual tea party, which inspired the idea for the 'Blue Sunday' tea party for M.E., as an accessible way to raise money for M.E. awareness in May 2013.
Every year on 'Blue Sunday', M.E. sufferers and those close to them have a tea party to raise money, with most joining in virtually due to the nature of the condition. The Blue Sunday Tea Party is celebrating its 11th anniversary in 2024 and has so far raised over £100,000 for M.E. charities across the world.
Anna has been running the Blue Sunday Tea Party for M.E. since 2013, as a way to fundraise but also to break the isolation so often experienced by people with M.E. You can read more about how the Blue Sunday Tea Party started on Anna’s blog.
We would LOVE for us at Aviva to raise as much as we can towards this goal, so please grab yourself some cake and a cuppa and donate to this page. All donations are greatly appreciated and will go to the Action for M.E. charity, with £1000 matched by Aviva.
For everyone that’s stayed and read to the end, a massive thank you from Em, Holly and Em.
