Karen developed septic shock after a routine operation in November 2020, which resulted in her being put in an induced coma for seven weeks.
She came across the UK Sepsis Trust’s support services after fundraising for us, and now plays an active role in supporting others through our online support groups and has recently set up a new face-to-face group for sepsis survivors in Dorset.
She wants to share her experience in a bid to encourage others to come along and speak about their own journeys with sepsis.
When she woke up after seven weeks in an induced coma, Karen was calm but weak and unable to move much due muscle wastage and nerve damage. She also had problems with her hearing and was unable to lipread due to everyone wearing masks because of Covid-19. Karen was in intensive care for 74 days and in hospital for five and a half months in total. She said: “It really was a tough time. I had to learn to swallow. I had to learn to walk again, and I had to learn to feed myself.”
While she has since regained the use of one of her hands, she is still experiencing problems with the other and is still doing physio. Upon leaving hospital at the end of April, she accessed a recovery group through her GP. It was only when Karen decided to have a celebration for her 70th birthday and raise funds for the UK Sepsis Trust that she realised what an extensive range of support services we offer. She said: “I actually spoke to Emma (one of UKST’s support nurses) when I rang up. Really lovely, friendly, nice lady who I’ve since got to meet to speak to more often. Anyway, she said, ‘Oh, what have we done to help, how have we supported you?’. And I went, ‘I didn’t know you had support!’. So, I went on the Facebook page and I looked online and I saw all this amazing support and I thought, I’ve got to tap into this.”
The first place Karen turned to was our Facebook support group. She said:
“I thought, I’m not alone. So many people have had sepsis.”
Next, Karen joined one of the online recovery support groups. She said: “I was at that stage wanting to offload my experience because it was quite difficult to talk to my husband. I needed to talk about my experiences and also to fill in the gaps.”
Joining that first meeting was a nerve-wracking experience, but Karen was glad she did it. She said: “When I first went on the Zoom meeting, I was quite nervous, I’ve got to say. I didn’t know what to expect, but it was so calming. Oh, I can’t tell you how relieved and happy but tearful I felt about it. I found peace because I could actually offload what I was thinking and what I wanted to say in a non-judgmental, safe way. Everybody was supportive. You had time to speak, but if you didn’t want to speak, you could just listen.”
In terms of the structure of the meetings, Karen wanted to share what you can expect. She said: “Whoever facilitates out of Emma, Oliver, or Katie, they welcome you as soon as you come on, they tell you how it’s going to run, and each person has a turn of speaking if they wish. You don’t have to. You don’t even have to have your face on if you don’t want to, you can turn you can turn your picture off. But I’m a people person and I really found it invaluable to come on. I’m lucky because I’ve retired, but sometimes we talk about finances, sometimes we talk about the trauma of going back to work, the acceptance of fatigue, all that sort of thing. It’s not just about our symptoms, other people have got so many worries and they can’t always share them with their loved ones. So, it’s really important that they have a platform to say what they want to say in a really non-judgmental way.”
With each group she attended, Karen realised she was able to help others at different stages in their recovery, which led her to become a volunteer, and she has now launched her own face-to-face support group in North Dorset. She said: “Wherever you are in the UK, you will get a really good welcome. There’s no pressure to talk, have a cup of tea or coffee, I shall have bottled water as well.”
“Just come and have a chat if you like; it may be you just want to listen. It may be you just want to come and sit for a minute and just take stock and that’s absolutely fine.”
“But all the volunteers are here because we want to share your experience with us so that you can have a little bit of support. And sometimes we can signpost you into different places that you may not have heard of.”
Group meetings aren’t for everyone, though, and luckily the UKST is able to provide 1:1 support. Karen said: “If you are quite shy and you don’t want to be in a group setting, please ring and speak to a UKST support nurse. You will get a very understanding, very caring, compassionate conversation with them and they can signpost you, obviously on the medical side, they are trained nurses from ICU.”
We also offer a range of information for sepsis survivors and their families, which Karen found helpful. These resources help explain some common side effects of post sepsis syndrome, such as hair loss – which Karen also experienced. She said:
“When I read the support for sepsis survivors and their families, I cried because that was so relevant to me.”
“And even if you just pick up a book and look at it, hopefully that will give you some kind of support because it I couldn’t believe that so many people had gone through similar journeys to myself.”
But for Karen, it’s all about the little wins – which she was able to track with our recovery diary. She said: “If you do ask for one of the diary packs it is amazing because certainly for me, my improvement from my first initial symptoms and condition were minuscule. But if you’ve got a diary, you can go ‘Oh, last month I couldn’t do so-and-so, but today I can’. And for me it was things like ‘I’ve only cried twice today because last week I cried four times or the previous week I cried six times’. So, it’s all about very, very minuscule little hurdles that you get over.”
We’re grateful to Karen for sharing her recovery story with others and for working to provide support to others.
