Around the end of April 2022, I was in a very dark place after not recovering from covid/vaccine. No-one understood what I was going through, even my husband Mike, my daughter Amelia and my family. I was so bad I couldn’t face going out the door. My work was putting pressure on me to return and finances were a struggle.
I had contacted Falkirk Council, several MSP’s, doctors and consultants asking if they could tell me about financial support or support groups for Long Covid but there was no reply for a few weeks from anyone. Things were getting desperate, and I decided to reach out via Facebook to our local community to see if anyone else had Long Covid and would like to meet for a coffee. At this point navigating Facebook was difficult, anything to do with technology I couldn’t cope with. They were dark, dark days.
Then one day in early May 2022 Gaynor, Noreen’s daughter, messaged me and said her mum had Long Covid too and could she pass on my details. I couldn’t believe it; I wasn’t the only person. I was over the moon to hear from her. We sent a few messages back and forth then Noreen messaged me. I arranged to go to her house to meet for a coffee but when I arrived, she had forgotten I was going and was having a family meal. We ended up having a coffee and chatting for ages. We really hit it off from day 1.
Just before our first cuppa together I’m sure Michelle Thomson MSP emailed me and suggested that I hire a hall and invite people along. I was furious! I was to be out of pocket to help others with no backup or support. Obviously, that got under my skin. No-one was receiving help or support; therefore, I started to think seriously and out of stubbornness, about what I could do. I didn’t think I had the energy but it’s amazing what you can achieve when you get absolutely p**sed off and angry.
After speaking to Noreen, and finding similarities in our symptoms, we knew there must be more of us. Especially as the media was starting to say loads of people were having long term effects. That was when we decided to see if there were any places we could hire. I put out a post on Facebook about hall hires with disability access. That’s when Lesley messaged about hiring the lodge in Brightons. Lesley touched base saying she had Long Covid and would love to meet us.
Not long after, I heard from Falkirk Council and they gave me Anne Donoghue’s details. I emailed Anne, and she suggested a cuppa to discuss support in Falkirk. We arranged a meeting on the same day and Lesley also attended. Anne has been a great support and told us if we decided to get a meeting set up and continue going forward, we could access funding from the council.
After meeting Lesley, Noreen and I were absolutely blown away with her journey, devastated to hear the impact on her life and obviously made a good connection and friendship. That was when we decided to organise a hall hire, invite Michelle Thomson and I messaged the Falkirk Herald. They wanted to run a story and take pics. I declined but after speaking to Noreen we decided that it would be good free publicity.
The Cuppa Group
We held our first Cuppa Group Meeting on the 17th June 2022 where 22 people attended. It was an emotional meeting where everyone told their story. We really should have been sponsored by Kleenex at that first meeting as there were so many tears. The group now has 145 Facebook members and we continue to have monthly meetings where we meet in person at Upper Braes Parish Church Hall. Sometimes we meet for tea or coffee and a chat and at other times we might have something like a meditation session, sound bath, singing or arts and crafts. Lots of members say that this helps them with their emotional and physical symptoms and wellbeing and gives them the opportunity to try something new. We are hoping with the launch of the website and our peer partnership with Chest, Heart and Stroke Scotland, that we will reach more potential members, but we more than anyone appreciate the challenges that living with Long Covid brings including sourcing help and support. We hope that we offer that little glint of light at the end of the tunnel.