My lupus symptoms escalated after I had glandular fever in 2005. I then had four periods when I was unable to work for at least three months at a time. I was fatigued and not great to live with! My wife, Maggie, contacted the Myalgic Encephalomyelitis clinic at Peterborough Hospital for a referral, which included multiple blood tests. Positive ANA and ds-DNA tests resulted in a rheumatology referral.
“Hello John, I’m Mark, and you have lupus” – an emotional moment. I started my treatment with hydroxychloroquine, but it was slow progress. I was medically retired from my IT management career of 32 years and have not worked since, with the resulting hit to my finances and the loss of personal contact. I could no longer play golf (my last round being Royal St. Georges in 2010, where I had to hire a buggy halfway around the course as I could not walk any further).
So 2011 was a lost year of not feeling well, even with the treatment.
With nothing to do, I changed my sport to fishing with my grandson, which was a lifesaver then and for the next few years. My grandson would carry the gear and set up, so all I had to do was cook and fish. I enjoyed spending weekends following my grandsons’ successful junior football careers – using a shooting stick and my fishing chair to watch, in comfort, from the touchline.
Following years without a holiday, we booked a trip to Edinburgh. About to leave for the airport, I carried our bags down the stairs, fell, and landed at the bottom with my legs in the air against the wall. The hospital diagnosed soft tissue damage, but I couldn’t walk up the stairs, so I slept on the settee until the phone rang at 01:30. Maggie, took the call. “Can Mr Webb come back to the Hospital, his back is broken”, resulting in three months in a brace and surgery the following year.
During my recovery I attended an information day run by the Cambridgeshire Lupus Group (CLG). I met two ladies there – little did I know they would become my rheumatology nurses at the Hinchingbrooke clinic! We had a great relationship, and they were very helpful. Sadly, they have now both been poached by Addenbrookes Hospital!
This was my first contact with the CLG; their chair at the time was Shelagh Cheeseman. I was impressed with the event and I contacted Shelagh a few weeks later, who suggested that I join the group at one of their “coffee and chat” mornings, which was held at a Cambridge garden centre – Scotsdales (which remains one of our venues). When I arrived, I saw a group of women, but, before I could ask if they were the CLG family, Shelagh was out of her seat and welcomed me to the group. They were a friendly bunch, the coffee and cake were great, and I felt comfortable even though I was the only man there.
Next, I applied for my LUPUS UK membership, and after a couple of visits to coffee and chats, Shelagh asked me to join the committee, who were keen to include me as a representative for the male members of the lupus community. The timing was perfect as, by now, my grandsons were older, and the fishing and football trips were less frequent.
I immediately started enjoying my time on the committee – I took on IT responsibilities and, eventually, became involved in producing the group’s newsletter with Helen. I created the presentations for the next information day, but unfortunately I wasn’t able to attend due to a lupus flare and feeling “down in the dumps”.
My low mood continued, as I had a lot of time on my hands, and my thoughts started disappearing down “rabbit holes”. Looking back, I had some bizarre episodes which the family and I didn’t recognise, at the time, as me being not in a good place mentally. These episodes eventually led to me suffering a breakdown.
Wow, this certainly changed my thinking on mental health! I realised that I had become lost and needed help. That help came in the shape of cognitive behavioural therapy and medication.
I don’t know if members of CLG were aware of my condition, but I do know that, when the treatment I received started to improve my depression, the committee work and the friendships that had grown as a result of it helped raise my mood further.
My work with the CLG committee was a reason to get on and do things – a reason to get out of bed in the mornings. This was Shelagh’s gift to me, and thankfully I have not had another episode since that time.
Sadly, Shelagh was forced to stand down as Chair in 2017 due to her failing health and she passed away in early 2018, which was a huge loss to the CLG, and LUPUS UK. I will always remember Shelagh whenever I have coffee and chocolate cake. The CLG dealt with a double loss that year, when they also lost committee member Shirley Smith.
Davina Frost took over the chair when Shelagh stood down and ably steered the ship until I took over from her in April 2020 – just in time for Covid!
Being the only man on the committee is highly informative as it is never just lupus that is discussed. During committee meetings, conversation often includes discussing specific female issues that can result in “Sorry John” comments. We have a standing joke that I time the length of our meetings and coffee and chats until sewing is mentioned!
The committee are a great bunch. I enjoy their company and consider them to be friends. They are all quick to help with advice for lupus and other issues for anyone who needs it and are also there just for a chat if needed.
Before Covid the CLG were holding regular coffee and chats in four locations in Cambridgeshire, but during the pandemic, these became online meetings. We have many members who do not use the internet and, as a result, we ensure that we keep these members informed by letter. We have held two coffee and chats since Covid, with those who attended, thankfully, not having any adverse effects. We hope that the more meetings we have, the more members will feel confident enough to join us.
Being a volunteer, helping with events such as information desks at our hospitals and the flagship Information Days as well as fundraising events can be fun and, importantly, I feel that I am helping to spread the word that there is help available to our lupus community and their families and friends.
New members and volunteers are always welcome to attend any of our events – or even to join our committee and occasionally talk about sewing!!
John Webb, Chair of the Cambridgeshire Lupus Group
LUPUS UK would like to celebrate their volunteers by including this ‘Volunteering Spotlight’ item in each edition of our e-newsletter and on their website – throwing the spotlight on a different volunteer each time – we would love to hear from anyone who would like to write about what they do for LUPUS UK and why they do it.
Current volunteers or anyone who would like to have a chat about volunteering can contact Alida Horne at email@example.com or on 01708 731251.