LONG COVID AND LIVING WHILE RECOVERY CONTINUES

Masked Asian man show wooden sign with wording “Long Covid” in dark room (Unsplash)

I thought I’d write an update about life with long covid, a long term condition and living with hidden disabilities while trying to work full time, be a partner, mum and academic who cares about their career. This last 18 months has been a challenge but with lots of good parts and opportunities. I’m an inherently positive person, taking each new day as it arrives but I must admit to some faltering moments in recent times.

If you don’t know, I had a close call with covid before vaccinations were availabile and nearly lost my life. It left me with long covid and I’ve had such a variety of symptoms and physiological disruptions as a result of it. I’m still having new things pop up; it’s certainly a ride. I have severe asthma as a pre-existing condition, so that’s definitely complicated things.

Covid left me with :
– long covid
– breathlessness
– crippling fatigue
– sleep disruptions
– a change in ability to exercise
– irreversible loss of hearing in my left ear
– gastrointestinal disruptions
– menstrual disruption that’s now resolved
– ongoing mild trauma from covid hospitalisation experiences

long Covid syndrome and coronavirus pandemic symptoms that persist as a burden concept or being tied trapped as a hauler of a virus infection with 3D illustration elements (Unsplash)

Covid also gifted me with two cancer scares in the last 12 months. The first was a large lump on my neck that developed and didn’t go down. I went through scans and tests for lymphoma. Thankfully that was shown to be an enlarged lymph node that is still there but somewhat smaller. The second was a need to check if I had a brain tumour of some description as the sudden and irreversible hearing loss was unusual but I’ve recently had the all clear on that following an MRI of my ear and brain. The ENT consultant agrees the hearing loss is from the acute covid infection and severity of my illness at the time.

Over these months, it’s often been hard to access healthcare with my various issues. As a champion of the NHS and my colleagues there, I’ve had to be patient but I’ve also experienced frustration, as at first little was known about long covid. I found a great health coach to help me get active to some extent. I have had a superb experience with the long covid service in my locality, however. I had a period of sessions with a physiotherapist to get me walking and exercising better while closely monitoring my heart rate and oxygen saturations. Then I had eight weeks in a long covid online therapy group (a bit like CBT) to help you understand your limits, what you can do to help symptoms and what to do to preserve energy. It was run by a pain team, using the techniques developed for those with chronic pain and it was excellent. One of the best things about that was that I finally met other people with long covid and it was validating even though we all had different symptoms and experiences. I had a really good cry after our first long covid group meeting because I finally didn’t feel like the only person walking this journey. We have a little WhatsApp group chat now and they are the best people.

Things that have helped me adjust to this new and more limited me are some adaptations in my work life including working at home when I can, classrooms as near to my office as possible, using captioning in online meetings and teaching and a supportive boss. Things that have helped my wider life is firstly, a hearing aid which has limitations but does help, my family’s support and knowing I can chat to another person with long covid if I need to. I have a great asthma consultant who has been compassionate about the extra burden long covid brings to my asthma picture and he continues to try and improve my quality of life (thank you, Stephen).

I’ve since had a second bout of covid and while it was tougher than I expected now I’m fully vaccinated, I wasn’t hospitalised this time and I don’t feel any worse than before now that I’m recovered.

I am managing to carry out my full time job but there are times where it is all I can do in that day, then just sit in the evening when I’d like to walk or do something. I often feel inadequate about things I need to do to further my academic career, get papers finished and published etc but I do have to take it one day at a time and manage what I can.

Here’s the newest good bit. One of my fellow long covid buddies clued us into some probiotics that were part of a long covid study (link below to the study). I’ve now been taking them for about 9 weeks and I am seeing improvements in my fatigue and I can walk further and manage a day out without complete crash most of the time. Some of my friends have had even better results. I’ll be keeping an eye on the science on this one. The probiotics seem to have settled my gastrointestinal problems to an extent too. The breathlessness that comes on easily still persists.
https://www.mdpi.com/2673-8112/2/4/31

The future looks brighter than it did six months ago but I know that long covid doesn’t seem to be going anywhere and as such it’s a hidden disability for me and many others.

Thank for for reading. By reading this, you’re understanding what life can be like for millions of people with long covid across the globe.

Michaela

LIFE ON THE OTHER SIDE OF THE FENCE – TRYING TO BREATHE

Photo by Michelle on Unsplash

I thought I would switch persona for this post and blog about some of my recent experiences as a person living with a long term condition (LTC). It is a weird experience being a health professional regularly in the role of patient too, you do see things through a different set of eyes and from a range of perspectives.

I have the kind of respiratory LTC that means that I am symptomatic every day and unfortunately for me, my symptoms are overt and although I would love to hide this LTC, I cannot. Just writing this post feels very exposing. I cough and sometimes I cough a lot, I cannot control it, it controls me. I have other symptoms but this is the one that others see and I find it difficult having people see my vulnerabilities this way. My students, colleagues, friends and family see my weakness front and central. I try to be honest and explain what is going on with me so that people do not worry.

I have been in the middle of diagnosis changes for the last 12 months and I am still awaiting confirmation from definitive testing that should happen soon. However, I have lived with these symptoms for about 11 years and I have learnt to adjust to life with them. I don’t let this LTC rule my life, I take each day as a fresh breath of air (literally) and stay positive.

Evening cocktails

The purpose of this blog post however, is to talk about people’s reactions to my symptoms, things that I see most days and that sometimes make me feel offensive in my own skin just by existing and breathing. When I cough, I always cover my mouth, believe me, I am self conscious of how I am perceived. On public transport, in restaurants and in many places, when I cough, people look at me like I am carrying the plague and that I will infect them with an apocalyptic-inducing virus. In a setting where the environment is quiet like a performance, concert or cinema, people make their annoyance known. Peoples’ facial expressions do not hold back, they speak loudly about me to their companions, people move away and to some extent I have got used to these reactions. If I’m brave enough to get my inhaler and spacer out in public, I’ve heard the words ‘it’s a crack pipe’ more than a few times. I am frequently the butt of jokes regarding ‘my 40-a-day habit’. Most people would not react in this way to someone with another kind of disability.

When I’m coughing a lot, it is really difficult knowing that you are being watched like some kind of spectacle. Colleagues, students, friends and family really are the exception here; they are the best. They continue and don’t make me feel uncomfortable, just allowing me to gain control and carry on. It is the perfect compassionate response and I don’t mind if someone asks if I am okay. My symptoms really don’t interfere with me doing my job well, they just mean that my students learn that health and ill health comes in all shapes and sizes.

Recently, I had an experience from someone I know, who knows some of my difficulties with this LTC. Their reaction floored me, hurt me and made me reflect on how I am perceived by people. I coughed once behind this person who proceeded to let me know that my ‘coughing over them’ was unwelcome, a number of other things were also said and they related their concern that I could infect them with a life-threatening infection. This was just another episode in the series of feeling that my existence with this condition is offensive. Very unlike me, I was speechless and could barely respond to this individual and it left me feeling sad, isolated and misunderstood.

What is the point of all this monologue? Our society is full of individuals that live with LTCs, diseases and health conditions that are unseen. Whether that is a physical or mental health problem, most people don’t have a sign saying what label they are living with but we do see people’s symptoms out in society every day. I wish people were kinder towards those like me, I wish people could start from a compassionate position, with patience and thinking the best of others. I wish there was less judgement and more tolerance of symptoms. So next time someone really needs the toilet urgently before you (but they don’t look ill to you), someone is anxious and seeking reassurance or someone needs to sit down on the bus but they are younger than you…maybe have an open and compassionate mind.

I am open to answering anyone’s questions and thank you for reading.

All the people

Can’t make any changes now!

I recently finished my PhD after a 7 year part-time programme and it feels good to have finally reached my goal. It has made me reflective about all the people who have helped make me the nurse I am today. I’ve been a nurse for 26 years (29 years since I started as a student nurse) and I’ve enjoyed thinking about those influential people. I am going to tell you who and why.

• Joan Quinland – Personal Tutor from my RGN training
• Nikki Harney – all out crazy fellow student nurse and qualified companion and study buddy and ANP-to-be.
• Stephanie Jones – encouraged me out of my young shell and steadfast friend.
• Jacqui Burrow – the most together student I ever met, which probably explains her impressive job now.
• Melanie Stephens – a third year student nurse on my second ward who I wanted to be like, then later a colleague in higher education.
• Caroline Williams – educator on the NICU, all round best person to encourage you in the most scary environment. Continues to inspire many newly qualified nurses.
• Heather Birds – my manager on NICU who helped me spread my wings on a number of occasions.
• Louise Richards – my mentor on NICU who taught me the right way to do everything.
• Clare Robinson – there aren’t enough lines to thank Clare for her experience and support both 20 years ago and still to this day, championing me along the way, practically and with friendship.
• Becky Robinson – when the mentor is inspired by the person they are mentoring, you continue to inspire me.
• Liz Ashton – my personal tutor during my children’s nursing training. She was my role model for the kind of personal tutor I wanted to be in higher education, she was that good.
• Tony Tinsley – I only ever had to observe Tony to see how family-centred care should be.
• Jane Hughes, Lucie Moore and Sam Rogers for my first opportunity in higher education, from colleagues to friends and once again colleagues AND friends. Your support has been amazing.
• Jane Roberts – the best egg, office mate and hands-off mentor.
• Jo Smith – if I could put this one in bold, I would. Jo helped me move from zero research skills to Dr, with exceptional support, supervision, facilitation and friendship.
• Tony Warne – who supported my upgrade to PhD study, believing in my ability to deliver.
• Alison Cavanagh – probably the most zen work space I’ve ever shared with one of the most kind people I’ll probably ever meet. Alison also supported by mental well-being in an official capacity during my PhD.
• Amanda Miller – PhD buddy and friend. We have messaged one another so much along the way, words of doubt and encouragement. I’m so proud of your success, Amanda.
• Tony Long – the calm voice of reason, realistic but also a great problem-solver and advocate.
• David Garbutt – an inspirational teacher, nurse and innovator, who’s shared palliative field interest has influenced my practice hugely and general friendship has been wonderful.
• Gill Crossthwaite – when the word grafter was invented, Gill was at the centre. Gill, Jane R and I made the most memorable mini-team of my career so far.
• Ginny Bennett – what a kind support Ginny has given me as a researcher and friend. Listening to my doubts and insecurities about my work, always offering sound advice and encouragement.
• Ann Foley – I will never be too long in the tooth for a mentor, especially the kind of support Ann has offered. What a women, educator and friend.
• The best UoM corridor folks. So many genuine words of support – Debbie, Arija, Karen, Janice, Sam F, Nicky, Helen, Jonathan and of course again Jane H, Lucie, Ann, Ginny and Sam R.

Thank you to each of these people. I feel gratitude that I’m in touch with most of you still today.

I’ve kept this professionally focused because of course, friends and family have been a huge part of who I am but I’ve thanked them in different ways. In addition, last but definitely not least, my gratitude to every baby, child, parent and family member I’ve looked after, worked with or researched with.

#reflection #phdlife #givingthanks #bloglife

Finally ready and waiting

Hard graft

After seven years, I finally handed in my PhD thesis a few weeks ago which feels like an achievement but I can’t let that feeling sit for very long because I still have the oral examination (VIVA) to come. So, here I am, trying very hard to keep my knowledge at the forefront of my mind and not let it wander off into Game of Thrones territory, so that I will be prepared for this final hurdle.

Part-time PhD is a difficult journey just as full-time PhD is but there are challenges related to the protracted length of part-time study, such as: keeping motivated, maintaining the contemporary nature of your research and the literature underpinning it and most of all, balancing your job with such a demanding programme of study. I have struggled with each of these elements throughout the seven years and have found my own solutions and strategies to keep going. These are some of the issues I want to blog about today.

Motivation can be difficult, a seven year degree sounds ridiculous on the one hand, but what has saved my skin has been the passion I have for my subject. I am children’s and neonatal nurse and I specialised in palliative and bereavement care in clinical practice. The study for my PhD has been in this context and so my desire to further my own knowledge, make a unique contribution to the evidence and a wish to represent the lived experiences of families going through the worst that life can throw at them, kept me focused. My biggest tip for anyone thinking of embarking on a PhD is to research and study something you care about so that when the writing makes you feel suffocated, repeatedly, as it will, your passion will help you rise to the surface and breathe. Stay connected to your subject, users, students, the public involved in your subject and you will always keep hold of the ‘why you are doing this’.

A lot can change in a subject context in seven years, especially in healthcare and even more so in a newer speciality such as neonatal palliative care. If you undertake a full-time PhD, the odds are that in the 3-4 years of study, your writing will be contemporaneous but it is quite different if you are studying for longer. My subject is in a fast-moving world with pharmacological, technical and medical developments changing care all the time. What I found was that my literature review, undertaken at the beginning of the seven years was rather out of date by the time I was getting ready to submit. I knew this was the case because I had stayed connected to the neonatal and palliative care world but this did mean a lot of leg work to update my literature review. It is an expected update for part-time PhD but I think I underestimated how much work was required. You can help yourself by having alerts set up for journals that publish your kind of research, attend conferences that keep you up to date and if possible be involved in networks that take you to the front line. All these strategies helped me keep up with what was going on in my subject.

The biggest challenge for part-time PhD normally comes in the form of the other ‘thing’ that you are doing with your time and for most of us in this boat, it is a job. I’ve been a full-time lecturer with PhD ‘on the side’, ‘a hobby’, ‘constant guilt trip’ and ‘the other member of my family’. It is so important to have an employer that is invested in your study, normally there is significant gain for them. If your employer isn’t able to or doesn’t want to deliver on the investment it needs for you to succeed, make a change. As a wife and mother, I needed an understanding and supportive family and I am lucky to have had this through seven years of ups and downs. If you have dependants and commitments, you are going to need their support but be as honest as you can about the time frame, the deadlines and when they will be and that Christmases will probably include PhD.

On top of all of this, to be successful at the long journey (I know, I’ve not made it yet, still the issue of that pesky VIVA) you need resilience. Resilience is needed to stay the course in literal terms, but also to get the most out of constructive criticism and to cope with the long road of ethical approvals and transcription (if applicable) and writing up. Resilience is also needed to fend off extended family enquiries at year 5 Christmas get-togethers where you are repeatedly asked ‘are you still doing that thing?’ Resilience in PhD is a building project, you may have some natural resilience but the ups and downs, the occasional knocks, all build towards you being more resilient. Use those negative experiences to make you stronger and good luck!

Young people with anxiety, a personal and academic perspective

I have a family member with anxiety and I am a lecturer in higher education but I am not a mental health practitioner. However, I support a proportion of students who are young people each year who have anxiety. In fact, young people reporting symptoms of anxiety and depression has increased from from 18% in 2009-10 to 21% in 2013-4 with young women more likely to report this issue than young men (Office of National Statistics, 2017). So this means that potentially, a fifth of the young people I interact with are experiencing problems with anxiety and/or depression. I strongly believe that this makes it not just my business to be aware of this and to think about my interactions, but actually it’s everyone’s business. It is the business of friends, family, teachers and employers.

My experience on a personal level is that anxiety still carries a significant stigma for those individuals navigating this journey. Many people don’t actually know how anxiety differs from the normal experience of being anxious. (It’s okay if you don’t know the difference but please click the link to find out more Young people and anxiety). This means that teachers/lecturers, advisors, family members, peers and friends can completely misconstrue what is going on when a young person is experiencing anxiety. It can be perceived as not joining in, not interacting enough especially when the young person is having difficulty explaining why they can’t do something in that moment or is seeking repeated reassurance. Not only does this have an effect at that particular time period, but it is my experience that for many young people with anxiety and/or depression, it leads to a situation of being written off. ‘We won’t ask him/her because they didn’t want to do it last time or they won’t want to do it.’ This differs significantly to the approach that would be taken when a young person has an ongoing physical health problem such as asthma, for example. In that scenario, those around the young person will consider their health problem when it is obviously having an effect but they will return to the young person another time to include them in future activities. To my mind, this is the big difference and the disparity between how the general populous thinks about a physical health problem as opposed to a mental health problem such as this.

We need to be more informed and better at interacting with and supporting young people with anxiety in daily life. We need to empower these young people into independence and not crush their creative, academic and personal spirit. When we inadvertently crush the spirit of a young person with anxiety, it has a significant effect on already low self esteem and confidence. It often needs careful handling and I cannot claim to be an expert having made some mistakes along the road with my family member but I am passionate about equality for those young people experiencing anxiety alongside their peers who don’t have this problem.

As an educator I have also noticed that young people with anxiety will not shout about their strengths, they may not even believe they have any but they certainly do have them, in as many buckets as any student in a group. I find it may take a little longer to enable students with this problem to contribute to seminars for example, but with rapport building and the support of an understanding lecturer/teacher and peers, students can often feel comfortable enough to feel able to do so.

These two perspectives have enabled me to learn and enhance my knowledge and skills constantly. What I learn from my family member, helps me to think about how I approach my interactions with students who have anxiety and vice versa. I think my personal perspective, gives me an insightful approach to sitting down with students, listening and helping them to navigate their student journey alongside their ongoing mental health needs.

*I had the permission of my family member for any reference to them in this blog post*

Keeping a personal identity, being me.

Somewhere in the last year of PhD I feel like I’ve lost my identity a little. Those things that make me who I am, the real me, how I express myself, how I feel centred. I’m sure this is completely normal on such an all-consuming journey, especially when you’re doing the ‘big P’ part-time alongside a full time job, like I am. I feel that any spare moments must go to my family. It doesn’t leave a lot of time for me to be me. This is not good news when you’re immersed in grief, loss, mourning and their emotions as part of your research.

So, I’ve had a little re-boot and re-think about what I need, to make me keep ticking , keep my identity and enjoy some more moments outside of PhD. These are the things I love – playing piano, reading, being in the mountains and of course my family. 

Playing piano must be the best stress reliever I have. Strangely enough, it’s not a place where I empty my mind and just play, it’s a place of thinking for me. I sit down, play and pour my emotions out onto the keys, expressing myself. Some of the most precious compliments people have given me when listening to me play have been with regards to the emotion in my playing. This is a truly cathartic strategy for me. The thing is, I’ve not been doing this of late, when I used to play every evening. PhD has eaten into this and I’ve let it. All I need is 15-20 minutes to feel the benefit and it works so much better than reading (another beloved pastime). 
I like to dabble in a bit of composition too and here is a middle portion of something I started writing about 10 months ago for  piano. I suspect I won’t finish until after PhD but it’s something to look towards, meanwhile I’m determined to keep playing and ensure I have an outlet for the research I’m writing up. Hopefully, I’ll feel more like the me of old.

Fresh air

The need to keep breathing fresh air in an environment steeped in living and dying becomes a survival priority over time. I am no stranger to the business of working with children who are facing a short life before the dying part. It’s been my privilege to nurse some wonderful children and families in this situation. There’s not one thing I would change about my career direction but the cumulative burden of teaching, researching and spending all my time immersed in this field brings a weight that need to be managed. 

It’s like a game of jenga, unless you have solid foundations of knowledge, resilience and take time to attend to the constancy of the emotional load of children’s palliative care, you will buckle. I have solid foundations, I have resilience but I don’t always attend to my emotional needs. I don’t think health professionals collectively have the time, the resources to attend to themselves or think that they need this kind of attention when others, their patients, are far more needy. The fact is unless we attend to ourselves, we will be unable to attend to others.

As a researcher on a current project, I have clinical supervision with a counsellor who is facilitating that need to ‘attend’ to myself due to the psychological burden of the research I am undertaking. However, I’m not sure once a month is enough. Many other health professionals involved in the daily business of caring on the frontline of neonatal and children’s palliative care don’t have such luxury. The need to maintain confidentiality reduces the ability to have a meaningful conversation with family or friends about this burden and shifts are often too busy for a stress-relieving conversation. 

As I feel my scales unbalancing with burden, my need for conversation arises so that the air stays fresh and my mind remains healthy. This is my place to do that.