Muddy Stories - Keira's Story

Foreword from C1 (Claire CEO Muddy Care CIC)

The thing about people living with chronic conditions is that seldom do we have just one chronic condition.  It is the nature of the beast.  Added to that we often don’t look really unwell to people, which makes explaining to people our challenges and needs very difficult because we so often see doubt in the eyes of the people we are revealing our chronic medical conditions to (mostly due to a lack of understanding and education).   The reality is when we are unwell we tend to hide so no one can see us, that and the reality we are just too ill to venture outside.  We are ill for years, not weeks, nor months and added to that our conditions are usually not curable.  It’s a continuous line of curve balls.   You have to learn to cope with both a new level of adversity and resilience when you have chronic conditions.  Neither are in the dictionary 😊

What I have learnt through my own experience and that of speaking to so many people with chronic conditions, is that all conditions are interlinked, mental and physical.  Our bodies are ecosystems.  A physical flare affects mental health and mental health affects physical health.  I understand and fully support the reductionist approach from a medical perspective, absolutely,  but from a perspective of health and wellbeing, we have to look at the whole.  Understanding and managing chronic conditions effectively and better is about both the reductionist medical model and a holistic approach to health and wellbeing working together proactively.  Keira’s story is both one of that not happening and one of it happening.

Keira has been exceptionally brave and honest in her story and I am sure her story will help so many.  Keira has and continues to build my understanding and knowledge of her mental health challenges.  I look forwards to my learning from Keira and another participant on Muddy Care who also has mental health challenges.  I hope through Muddy Care and our future projects our participants will also improve understanding of mental health for many more. 

Before you read Keira’s story, I would like to add just this.  Most people would struggle to cope with just one of Keira’s medical conditions.   Keira has multiple challenging medical conditions, physical and mental.  There is more than often a very real reason(s) why people have challenging mental health conditions yet it still seems that we are not prepared to accept this in our scrutiny of a person.  No one has the right to make any judgment about a person’s mental or physical health challenges nor put labels on a person.   Keira’s story highlights the reason why we must not do this because you have no idea what that person has been through nor is currently going through.  We desperately need to improve our attitude, education and understanding towards mental health and chronic medical conditions. 

I am so exceptionally proud of Keira for writing this and being so courageous in her vulnerability.  Keira is working tenaciously to make her life the best it can be.  She still has significant struggles and this highlights why communities such as Muddy Care are so important as well as expert medical and health professionals and support structures such as CPNs.  People with chronic conditions need chronic support structures, compassion and understanding.

Keira’s Story

I have been ill for 11 years, since I was 17 so the later part of my teenage years and throughout my twenties has been spent in and out of hospital and leading a life that is very different to what I imagined it would be.

At the age of 17 I first experienced mental health problems and developed anorexia, which I suffered with for four years. The last year of sixth form and the first year of university was ruined by this illness, which seemed to have come out of no where and had me in its grip in just a couple of months.

I hid this illness from everyone for over four months, as I couldn’t admit to myself that I was anorexic and I didn’t want to worry anyone. After a while it became too difficult to hide, as my weight loss was very visible and people did no longer believe that I lost weight due to a stomach bug or stress. Admitting that I needed help and knowing that I had to tell my mum was one of the hardest things I have ever done. I remember going to see my sixth form tutor, to tell her I needed help. I must have walked up and down the corridor for about 10 minutes before I had the courage to knock on her office door and ask for help.

Keira taking the photograph of the sunset - Photography is her passion

After that point I had regular doctor appointments but because I was starting university in a couple of months, I wasn’t referred for specialist help as they said I could get that in university and part of me was glad of this, because I honestly thought that when I started university I would start to get better. That didn’t happen.

I was only able to stay at university for four months. During that time my health declined and I was still waiting to be referred for help. I wasn’t able to keep up in lectures or cope with assignments, student life and my mental health declined, so I left my course and came back home. Within a few weeks I was seeing a specialist team who monitored me and tried to get me to improve my eating, but my health and weight kept deteriorating and at the age of 19 I collapsed and was blue lighted to hospital in ambulance and was lucky to be alive. My heart rate was only 32, my temperature was 34 and my heart was shutting down.

I was transferred to a local psychiatric hospital where I stayed for six weeks. This was not the right place for me as they didn’t treat the cause of my anorexia and I just ate to get out of that hospital. After another year of treatment, my weight was even lower then before and again I was admitted to hospital, but this time it was a specialist eating disorder hospital. I stayed there for three months and had another year of outpatient treatment before I felt I was recovered and could get back to living my life.

At 21 I went back to university, doing a different course. I was so happy. I was living away from home. I was experiencing student life. I was managing my eating and loving my course. But by the second year of university, I started feeling very unwell. I was extremely dizzy, I was passing out and I was so tired. I felt more physically unwell than when I had anorexia, but my eating had never been better.

So began the start of numerous doctor appointments with no one knowing what was going on. Some doctors said I was anorexic again or bulimic or it was just anxiety, but I knew it was something else. I eventually saw a consultant who diagnosed me with secondary Addison’s disease, a condition that affects the production of cortisol. I was put on steroids but still didn’t feel well. I was passing out several times a month, in town, in lectures and on field trips and was eventually diagnosed with postural tachycardia syndrome (POTS). This condition is a type of dysautonomia that affects my blood pressure and heart rate and there is no cure. I managed to complete my degree, finishing my dissertation from my hospital bed and I felt proud that I was able to complete my course, even through all that was going on.

After university I started working, but due to my health conditions I knew I could never do the job I wanted to, so I ended up working in my local town, but as POTS affects how long I can stand and walk for, as well as chronic fatigue, I couldn’t cope with working. I ended up having four different jobs in a year, until I realised, I couldn’t do this any longer. I was so dizzy, I could hardly stand. I was too tired to function and it was impacting my mental health.

As my physical health was getting to an all-time decline, my mental health also broke down again, due to personal circumstances. I was hospitalised again and diagnosed with borderline personality disorder, depression and anxiety.

The two years that followed were extremely difficult. I was classed as homeless and was moved to temporary housing. I had very unhealthy coping mechanisms. I was also getting new physical symptoms and was diagnosed with joint hypermobility, a heart condition (SVT) and a prolapsed heart valve. It took me a long time to come to terms with all of this, that my physical health wouldn’t let me do the things I wanted to and that my mental health is something I always have to be aware of. I started to think of other ways I could still do the things I love and I started up my own photography business, got involved with local groups and ended up finding Muddy Care.

I still struggle with my physical and mental health but I am now under good consultants who are listening to me and I feel are really trying to help me. I have a good CPN, who I see for my mental health. I am in a secure relationship and am trying to think of my future again and I am taking steps to try and make my life the best it can be.

Keira surfing as part of the MuddyCare pilot