Post Sepsis Syndrome
Post Sepsis Syndrome is an aspect of Sepsis that is rarely spoken about publicly. A lot has been portrayed in the media recently in regards to the symptoms of Sepsis but very little about what recovery entails. When I left hospital, not much was explained about the lengthy recovery and what it would encompass. I have had to complete my own research and get in touch with a wide range of medical professionals for support.
Recovery is dependent on the severity of sepsis, additional complications, time spent in ICU and ventilation. All of these factors vary per sepsis survivor and each individual will have a variety of post sepsis symptoms.
I am just over a year into my recovery from severe sepsis, severe pneumonia and influenza B, alongside a lengthy time in an induced coma and on ventilation (see previous post). What I have discovered over this period, is that recovery is slow, painful, emotional and challenging. A lot of people have very quickly dismissed my symptoms or assume that I am back to full health. I feel to talk about it irritates people or they believe I am holding on to the past.
There have been days where I have been at the doctors crying, believing that I am going crazy with my list of symptoms, as some people have made me feel as if I should be back to full health.
I have many days where I function and feel as I did before (and touch wood that these continue) however, there are days where my body will not function, where I can barely string words together, where I am terrified to be on my own (the list is endless). On these days my body and mental state are completely and utterly broken. This is not through not wanting to do anything, but instead my body will simply not allow it. There is a difference between being tired or working too hard; I know those both very well and could push through before having been ill. It is hard to explain, the only way I can describe it is I am broken. Even if I want to function, I physically cannot.
I cannot pick these days and I have also been advised not to stop living in fear of these days. I am however, very aware of the symptoms and can read my body better than I could before. I am aware when I need to slow down and take a step back from things. I guess you could also say I have become skilled in the art of masking how I feel so as not to upset others.
There are some positives that have come from this situation. I now take more time for myself and know that life does not revolve around things that I previously did. As cliche as it sounds, I am thankful to be alive and to have made such significant recovery.
What I wish is that people would take more time to ask people in these situations how they are. To not make them feel stupid for being upset or emotional, to not make them feel as if they are doing something wrong and to not presume that they are ok because they look ok.
Here I have listed my post sepsis symptoms:
- Walking at a fast pace still elevates my heart rate between 130–150. Exercise raises it to 190–200. I struggle to walk up hills, stairs or elevations. I become quickly out of breathe and over heat as my heart works too fast. On days where I have pushed myself too hard at work I feel as if my heart is trying to escape my body. I was never aware of my heart functioning before and now it makes itself very well heard.
- My lungs have suffered from scarring from the severe pneumonia, resulting in a reduced lung capacity. This has improved slightly over the last year. However, there is a possibility they may never fully recover. In colder weather I am susceptible to catching lung infections (of which I have had many in the past year). I find on days where I have done a lot I get a really bad cough, where I can feel the crackling in my lungs. At times I feel short of breath and have to take it easier in the hotter weather. As an exercise enthusiast prior, I now have to carefully monitor both my heart and lungs when exercising to ensure I do not set myself back.
- As I stated above, I have days where my body will no longer function. This is beyond exhaustion and sleep does not necessarily improve this state. It is as if every cell in my body has stopped working correctly. Where every muscle and joint in every part of me aches and is heavy. My heart rate is elevated during these episodes and often my breathing is faster and shallow. My brain does not process correctly during these times and I find it challenging to hold a conversation. Bright light and noises become unbearable and I find it hard to maintain focus on anything.
- I find this the hardest part of recovery as even though I want to be active and functioning my body will not allow it. At the start of my recovery these episodes were frequent but with time they have lessened. I now suffer several times a week but with well planned week days and weekends I can support the recovery of my body.
- Since leaving hospital I have suffered from Post Traumatic Stress Disorder linked to my time spent in ICU. Due to being in an induced coma and isolation in ICU I suffered from severe delirium and hallucinations.
- I struggle with the thought of getting ill and during times when I am ill suffer from extreme anxiety about going to sleep in case I were not to wake up again.
- I suffer from flashbacks at times in dreams and in day to day life. These can be triggered by a variety of things.
- I find small closed in spaces really challenging, leading to panic.
- As a primary school teacher I rely on being articulate and being able to string together sentences. However, I have noticed more and more that I find it difficult to identify words when speaking. I know what I want to say but cannot find the word. I often stumble over words when I speak and find it uncomfortable to speak in front of larger groups in fear that I will slip up.
- Over the past year my muscles have gone through a variety of stages. When I woke up in ICU I had lost around 40% muscle mass. It was like being a new born who could not walk or hold anything. Learning to walk again was so painful and it took me months to fully be comfortable walking outside on my own.
- I now suffer from chronic muscular pain specifically in my back and legs.
- My memory Post Sepsis is definitely not what it used to be. I find both my long and short term memory are impaired. I have to write a lot down and make constant lists to remind myself what to do and so that I meet deadlines.
- I find it hard to concentrate in conversations for an extended period of time and find I need to have silence more often.
- I love watching TV programmes but often find myself becoming annoyed with the noise and have to turn it off. Being in large noisy crowds can also make me feel really uncomfortable at times but I now use breathing techniques to support me in situations where I cannot just walk away.
- I suffered from severe hair loss after I was discharged from hospital. At one point I thought I was going to lose it all. As a woman (and not to be vain) your hair is a large part of who you are. I have spent the past year working with an amazing hairdresser slowly nursing my hair back. Prior to illness I had long thick hair which turned very thin and you could see my scalp. Over the past year it has started to grow back however, it is still very thin and the texture has changed. I rarely wear my hair down anymore. This has definitely been hard mentally to deal with.
- Ever since leaving hospital I find it really challenging to regulate my body temperature. I spend a lot of my days overheating and freezing others by opening windows or turning the heating off.
- Over the past year I have gone through a wide range of phases of sleep. When I was discharged I was terrified of sleeping and of sleeping on my own. I often thought I would never wake up and was terrified of my dreams.
- I now find it very hard to let myself go to sleep and often keep myself awake longer than I should. I was never great at falling asleep quickly, which allows my brain to work over time. I wake up most days exhausted and often nap in the evening or across the weekend to ensure I can function.
- I am now more susceptible to repeated illnesses due to a weakened immune system. I take a lot of natural probiotics to try and rebuild my body along with vitamins.
I now follow and belong to a large group of Sepsis survivors who I am able to communicate with on a daily basis. Being able to hear and relate to their stories definitely eases my worries at times (and means I do not have to burden those around me). It has made me realise I am not being stupid or going crazy in regards to my symptoms but it does make me sad as some of these survivors are years and years into recovery and suffering from similar issues.
I am now a part of an ICU steps group in Edinburgh where I hope I can advise and support others who have been in similar situations. We meet on a regular basis to support each other and to promote and educate others.
I am not generally much of a writer however I have found this outlet to be cathartic in some respects while also allowing me to share my journey. It is stories like my own that have supported me through the challenging days and that have provided me with information on how to recover.
I am positive about the future and enjoy setting myself new goals to accomplish. I am taking each day as it comes and learning not to be so tough on myself.
As a Sepsis survivor my favoured days are those where I can take life at my own pace, but unfortunately life must go on and I must muster on with continued positivism for my situation.