Sian’s journey

On the 8th February 2018 I was suddenly taken ill, I woke up that day and could not get out of bed. I had the flu and as a result I could not get out of bed to reach my mobile phone or my insulin (I have Type 1 Diabetes). As the day went on I could tell that I was getting more and more poorly, I had completely lost my voice and  by the time my son came home from college that evening I had a high fever, was extremely breathless, drowsy and my skin was mottled. An ambulance was called and quickly I was taken to GRH Emergency Department. I remember feeling huge relief that I was in hospital and I could hear clinicians saying that I appeared to have Sepsis. Things became pretty scary and frantic for the following couple of hours as I had multiple blood tests, chest X ray, intravenous antibiotics, iv fluids, insulin pump, arterial line, pick line and was catheterized and given oxygen. I was too poorly to go to a ward and one of the consultants from CCU came to see me, I couldn’t communicate but clearly remember the consultant telling me that as soon as possible I would be transferred to CCU. I had Sepsis, Influenza B, bilateral pneumonia and Diabetes Ketone Acidosis……

I distinctly recall arriving at CCU and being transferred to my bed (I loved that bed!)and thinking to myself “I am really poorly but I feel safe here”.

The following few days were really tough but I pulled through and after 9 days I was transferred to a ward and a week after that I was discharged and stayed with a relative until such a time that I could walk safely with a stick around my bedroom and be left for short periods on my own (this took approximately another 6 weeks).

In many ways the most difficult part of my recovery was still to come, I had no idea how hard it was going to be to start to rebuild my life and my health. Because I was now home it felt as though people expected me to be better already! For me to wash and dress myself was exhausting, I couldn’t climb my stairs, I didn’t have the strength to stand at my cooker and prepare a meal, I couldn’t load or unload the washing machine or go out of the house alone. Friends did my food shopping and to attend a hospital or GP appointment was a major event which involved a lot of planning and someone to accompany me. In the early months I had many symptoms that I have come to know was all part of Post Sepsis Syndrome. These included chronic fatigue, muscle pain, joint pain, swollen legs, numbness and tingling sensations to my hands and feet, nausea, low mood, hair loss, some of my toe nails came off. I lost my sense of taste and smell for several months and my appetite was very poor, I suffered from frequent dizzy spells, my short term memory was non-existent and my concentration was extremely poor. Even having a short concentration was difficult as I often knew what I wanted to say but couldn’t remember the correct words, I found this very distressing and couldn’t imagine me ever being able to get back to work. I had lost a lot of muscle mass as I was immobile for so long, often I would lose my balance as my legs simply couldn’t hold me up for any length of time. The psychological side was equally challenging, I had nightmares and flash backs and awful anxiety. If I smelt something that reminded me of the oxygen masks and equipment in CCU it would send me in to an anxiety attack.

During the first 6 months I had a few minor infections, UTI’s and colds which made me very scared that I was going to get critically ill again.

I felt that my GP had no idea how tricky my recovery was, there was a lack of awareness about Sepsis in general and no understanding of Post Sepsis Syndrome, he just didn’t seem to know what to do with me. As a nurse I have lots of medical friends and one of them put me in touch with the Sepsis Trust, they have a help line. One day I mentally hit a brick wall and picked up the phone. I didn’t think they could do anything for me but I had nothing to lose. The nurse I spoke to was amazing, she listened and reassured me that what I was experiencing with all of my symptoms was very common in patients who have survived a critical illness. It sounds cliché but she advised that I keep a journal, I did this and now when I look back I realise how far I have come. Little by little I improved, the most important thing I learnt was how to be kind to myself. Returning to work was hard and I needed a phased return for many weeks and reduced my working hours for 3 months. About 8 weeks ago I returned to my full hours. I work in a GP surgery and I have been amazed at the lack of awareness for patients like me, there is definitely a need to raise awareness of how to support patients who have survived their critical illness.

I still get some mild symptoms but I am improving week by week, I have learnt how to pace myself. I was lucky that I had medical friends who got me some support but most patients would not know where to turn. It’s a isolating experience. Last week I attended a support group meeting set up by CCU staff, it was so refreshing to be able to talk about our experiences with people who have had a similar experience. It was a safe environment where I could open up… I will always be SO grateful for the wonderful care  I received from the staff of CCU at GRH.

Thank you for sharing Sian.

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