Coronavirus & chronic illness: my reflections

If someone had told me just a few months ago that I’d be writing a post in the midst of a pandemic-induced national lockdown, it would have felt unbelievable! Sometimes when I reflect on the situation it feels like a dream, but on the plus side, coronavirus has given me cause for reflection.

I have come to the conclusion that I am probably at a higher risk of serious illness and death from COVID-19 than most, because my immune system has been ramped up for years and is permanently on high-alert. I have learned over the last 12 months (through self-education and experimentation) that I am Th1-dominant. Th1 and Th2 are two arms of the immune system that should be finely balanced – both play important roles, but the pendulum can swing too far one way and cause all kinds of problems. When I take anything that stimulates the Th2 pathway, I feel better, and when I take Th1 stimulants I get much, much worse. Apparently Th1 dominance is very common in long-term Lyme infections (I highly recommend Stephen Buhner’s book Healing Lyme for anyone who is interested in learning about this).

Having overzealous Th1 immunity means that when I do get transient infections like colds or the flu, I tend to get it quite severely, because my immune system goes overboard. Research seems to suggest this is the mechanism leading to organ damage in some people infected with COVID-19. But yet, with no “recognised” condition like diabetes or heart disease, I am not officially classed as a vulnerable person, and there is much uncertainty about just how vulnerable people like me are.

Nonetheless, in many respects, chronic illness actually gives me an edge on this. I have been forced to learn many skills that, while deeply painful to learn at the time, are now allowing me to deal with the pandemic with ease and peace. For starters, I am an absolute whizz at social isolation. Last year, despite being in the final year of my PhD and looking (I think) like a normal person who had a good grip on life, I calculated that I spent roughly 1/4 of the year housebound, and much, much more time leaving the house only for very brief periods of time. I have had to get used to not being able to go places or do the things I’d really like to do. Before I had health issues, I was always on the go. The gym brought me joy like no other, and I loved to run. But over the last few years I have had to learn to make peace with a much simpler life. Crochet, reading, and watching TV are my hobbies these days, and it turns out these come in very handy when there’s a national lockdown.

I have learned how to deal with uncertainty and unpredictability. Not knowing what tomorrow will look like. Not knowing if I’ll be able to go on that holiday we’ve booked for the summer. Not knowing when I’ll next see my friends and family. Not knowing how much work I will be able to get done tomorrow. Uncertainty is, for me, one of the hardest things about having a complex chronic condition because it means there is always the chance that planned activities will have to be cancelled, and that is universally devastating. But it has taught me how to be flexible and take each day as it comes, never expecting anything from the future.

I have also learned how to manage the thoughts in my head, even in the midst of deeply troubling times, which turns out to be a very helpful life-skill. A couple of years ago I did a “brain retraining” programme for chronic illness called the Gupta programme. The two main aims of the programme are (1) to learn to calm the nervous system through techniques like meditation and breathwork, and (2) to retrain the brain to focus attention away from everything related to chronic illness (which keeps you in a constant state of fight-or-flight and is not conducive to good health).

The Gupta programme was, without doubt, the hardest healthcare intervention I have ever tried. The brain really is a creature of habit, and until then I hadn’t realised just how all-consuming the thoughts and fears about my health had become. In the early days of using the programme I found myself practising the techniques hundreds of times a day, such was the extent of my illness-related thoughts (think: scanning the body for symptoms, worrying whether doing xyz will make me more ill, worrying about the future, wondering if I will ever recover, etc etc). But after several months of daily practice I found that I was able to gain control over my mind and stop those fear-inducing thoughts before they had a chance to take hold. That skill has come in very handy with COVID-19. After the initial few days of anxiety when the pandemic first came to light, I was able to recognise my anxiety for what it was and within one afternoon I had regained control. The Gupta programme taught me that, while it is hard to change your mindset, it is never impossible. I now know that no matter how deep my anxiety or negativity, I have the power to change it. And that, too, is pretty helpful in the midst of a pandemic.

The other thing I have noticed is that a national lockdown is, in many ways, very beneficial for those of us with chronic illness. I have long known that the more day-to-day “stuff” I do, the more ill I become. Each day, therefore, requires impossible decisions about priorities. Is going into the office for a meeting more or less important than being able to cook dinner? Is spending the evening with a friend worth waking up tomorrow feeling even more ill than today? Over the past few years I have found it increasingly difficult to keep up a “normal” life. I am, of course, very lucky compared to many people with chronic illness for whom any kind of normal life is impossible and who are completely unable to work, see people, or even get out of bed each day. But increasingly just keeping up with the essential tasks of life feels like wading through treacle. I have posted in the past about this. I essentially have the to-do list of a healthy person, with only a fraction of the time available to do it in.

But now, no-one is able to do those things. Everyone is housebound. No-one is going out and about, checking off all their to-dos or to-wants, or seeing people, and so there is no expectation for me to do those things either. I am able to avoid the time and energy involved in going into the office and instead work from home. Even just one day in the office is suprisingly tiring and symptom-inducing during bad patches of health. I can’t go to yoga or to a friend’s house or to that family meal; there is nowhere for me to go in my spare time and so I don’t have to make any of the usually impossible decisions about priorities. Finally, the world has slowed down to a pace I can keep up with. I no longer feel like I am playing a never-ending game of catch-up with the rest of the world. In many ways, I wish it could stay this way forever. Of course things will eventually return to normal but, for now, I am relishing the respite that comes with a slower pace of life, and I am eternally thankful for the lessons I have learned from chronic illness.

Regaining fertility: reflections one year on

This time last year, I peed on a stick for what felt like the millionth time in my life. My 30th birthday had recently passed, and I felt immense pressure from the ticking time bomb that was my ovaries. I had been taking ovulation tests on a regular basis for several years, after over a decade of hormone dysfunction and severe issues with my menstrual cycle. I say “regular basis” rather than “monthly basis”, because my cycles were so utterly f*cked that if by some miracle my fertility returned, there would be no way of knowing when I might ovulate.

For most women, ovulation happens around day 14 of their cycle. But having had severe hormone issues for most of my adult life, I did not have even remotely regular periods. So every now and then I would pee on a stick on the off-chance it might show that I had ovulated. Sometimes I would get a bit full-on and test every day for a few weeks; other times I would give up altogether for a while.

There was a very big part of me that thought I would probably never regain fertility. I say “regain”, because I was fairly sure I had once been fertile. Of course when I was a teenager I wasn’t exactly worried about ovulation (I’m not sure I even knew what ovulation was back then), so I didn’t make a habit of peeing on sticks. But I had normal periods for several years before all hell broke loose, so I assumed that I was once fertile.

But those days were a long, long time ago, and my body had been through so much since then. Hormone tests (which I had to pay for via a private endocrinologist because the NHS would not explore it…. that’s a whole other rant for a different day) showed that, at the age of 26, I had the oestrogen levels of a post-menopausal woman. I was effectively in the menopause in my 20s and no-one knew why, nor was anyone willing to help me find out why. Of course my hormone issues were not occuring in isolation; I had tons of other health issues that were “unexplained” and I can’t help but wonder if I were an otherwise healthy woman, maybe the NHS would have been more willing to help me get to the bottom of it. But it was very clear by the behaviour of most of the medical professionals I saw that I had long been labelled as a “difficult case”, and that my hormone issues were just another thing to be added to the long list of “weird stuff that you say is happening but we’re not sure if we believe you so we’ll just ignore you and hope you go away”.

Then there were the million ovulation sticks that all gave me a big fat “no”, again and again and again. It was a weird, paradoxical cycle of being convinced that I was always going to be infertile – followed by random glimmers of hope that I might be wrong (after all, no-one had any idea why I was infertile) – taking the test – the crushing disappointment as I yet again saw one, not two lines – followed by hopelessness and feeling convinced that this would be my life forever. Every time I peed on one of those sticks it felt like I was self-electing to torture myself, because obviously it’s going to be negative and how foolish I would be to believe otherwise. And yet, underneath that self-protective voice in my head there was the ever-present nagging hope that this time, it might be different. If no-one knows why you are infertile, and therefore by default no-one can tell you whether your fertility is ever likely to return, then there is no closure. And so I continued to test.

So this time one year ago, I was peeing on the stick with the usual feelings of simultaneous hopefulness and hopelessness. I had no reason to believe it would be positive, but as always, there was the possibility that it could be positive. And this time, it was. This time, there were two lines. I read the instructions just to be sure. After all, it had been years since I had read the instructions. All the information I had ever needed to know (one line = no) was forever etched into my brain. So maybe two lines didn’t actually mean yes. I did not want to even contemplate the possibility that this was really positive without double- and triple-checking. Then I thought that I should really take a second test. Because how crushing it would be if it were a mistake and after all these years of negatives this was in fact a false positive. So I took the second test. There were two lines.

I took a photo of it, which sounds a bit weird. On reflection, I think the reason I took a photo was because I still couldn’t let myself completely believe that it was true, and in the case that I later discovered I hadn’t actually ovulated, I wanted proof that I hadn’t gone mad and imagined those two lines. I think that goes some way to highlighting the extent to which years of unexplained infertility (and maltreatment from various medical professionals) had messed with my head.

That day marked the beginning of a very different life. I have ovulated every single month in the last year, confirmed by the at-home ovulation sticks, blood tests, and tracking of my basal body temperature (a metric that can be used for natural fertility awareness and clearly shows if and when you have ovulated). So I guess that means I am no longer infertile, at least from an ovulation perspective. That is pretty exciting, but the experience has also been a bit anti-climactic.

Firstly, it felt like no-one else appreciated the magnitude of what was happening. I had ovulated for the first time in 16 years. No-one had any idea why I wasn’t ovulating, what was wrong with my hormone function, or if it would ever self-regulate. So to me, the fact that it had switched back on after all these years was nothing short of a miracle. If this didn’t deserve fanfares and party poppers, then I don’t know what would. But alas, life goes on and I guess the fact that I had always just “got on with it” and not really spoken about the huge psychological burden of years of unexplained infertility meant that I couldn’t expect anyone to realise what a big deal this was.

Secondly, it is all a bit depressing because I am still experiencing substantial health issues. So while technically, physiologically, there is every reason to believe that my partner and I could have children if we wanted, in reality, we still can’t. Life is still an enormous struggle. I struggle to work; he struggles to balance work while also caring for me on the really bad days; we struggle financially because of the costs of chronic illness; we struggle to keep up with the jobs around the house because we have so few days when I am well enough to do them; we struggle emotionally. If we added a child to the mix life would be very, very difficult and I do not want to raise a child in those circumstances. I sure do hope that one day I regain full health so that we can have a family of our own. The experiences we have been through together have made us incredibly strong as a couple. We each have moments when we fall apart, and moments when we have the strength of steel. We prop each other up and that, I believe, would make us fantastic parents. Nonetheless, for now, I am no longer infertile, but I still cannot have children.

On the plus side, even if we cannot have children, regaining fertility is still something that I celebrate often. Sometimes when I sit and reflect on where I have come from, it is actually quite overwhelming. All those years of unexplained infertility that nobody could help me with, which I always somehow just accepted as a part of my life and never really spoke about. I used to feel that my body was failing at its fundamental job of being a woman. That was a huge burden to have carried for all of those years, and now, that burden has lifted. I still take those ovulation tests every month, because ovulating is something so, so precious to me that feels almost sacred. Every month when I see those two lines I feel like a child at Christmas; it never gets boring. Every time, I run to my partner with excitement that look, I have ovulated again! Every time I feel so much gratitude and am deeply in awe of my body. And that is something to celebrate.

Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 3)

This is Part 3 in a three-part guest series. See Part 1 here and Part 2 here.

The way forward?

‘Take responsibility of how I react’. I read in a book that we are always choosing. That sounds too easy, I thought, I didn’t choose to lose my babies. But the book actually meant that we are choosing how we react to what happens to us. I now choose to try to accept that it was not my fault that I lost my babies. My self-critical mind wants me to believe that I am weak, because I fell in a hole each time and that others wouldn’t have fallen so deep or would have climbed out faster and with less help. But I am learning to recognize that I have made a lot of good choices and am responsible for the fact that I did climb out again. I chose to talk, to face and explore all the emotions, ask for help, go to therapy, gave others opportunities to support me, challenged myself and perhaps most importantly I chose to be open to learning a lot along the way. Remind me of that next time I feel low and tell you how weak I am!!!

A plan B. Further tests did not yield any explanations as to why I keep losing my babies. Is that good or bad news? So what now? According to the doctors, we just need to ‘try’ again and either it will work, or have genetic testing done after 5 miscarriages. So I chose to take pressure off the ‘baby project’ by formulating an alternative medium-term plan. I am not giving up, but I want to face reality and put some control back into this process that seems mostly out of my control. I can’t live with having the baby dream as my only goal to work towards, as it can get all-consuming and self destroying. I always need something to work towards and to look forward to.

So in 2021, I will have 6 months of unpaid leave and travel – all arranged with work. Am I giving up? No. From now, that is another year of trying and then I will need a big exciting break. Every day, month or pregnancy will inevitably bring me closer to either my dream of having a baby or my dream of travelling for 6 months, rather than putting me back to square one. I can only hope that will take the pressure off a bit – which can’t be good for my physical health either. Maybe that is what people who had no problem having a baby meant by ‘just relax’. 2021 won’t be the end of the road, but the step up to level 2. We can keep trying and step up the game to private tests and private miscarriage clinics whilst further developing a model of a childless life with meaning.

Permission to be and explore. I have chosen to give this mindfulness thing a whole-hearted go and have committed to doing 30 minutes of mindfulness practice every day on an 8 week course. Mindfulness is all about noticing primary reactions to situations – noticing feelings, allowing them to be there and exploring them without judgement – and distinguishing them from secondary reactions – jumping on the old familiar association train that leads to self-critical thoughts. So far it has helped me to allow to feel grief without beating myself up and I have noticed that individual waves of grief or low self-worth are shorter and makes me learn new things when I chose not to board the association train. I noticed that instead of feeling an emotion, my mind takes it away from the body and tries to explain it with the old story I have pieced together about myself: ‘I am a failure’.

Break old measures of success and choose better values. One of my self-help books has made me realize that my values have been shit. I have measured my worth by comparing myself to others, being good at something, validation from others and money. I have friends I admire for their successes, but I don’t choose them as friends because they are successful, but because of their personalities. My double standards have always dictated that I had to prove that I am good enough (as a person, a friend, an employee, an acro yoga partner etc).  One of my books suggest that good values are reality based, immediate and controllable. Validation from others, or feeling good enough, is not reality but just a reflection of what I think of myself, because I never know exactly what others think. Validation does rely on others and therefore is out of my control. Also, being good enough is not immediate, because I always move the goalpost as soon as one is reached. I didn’t feel good enough when I achieved a First in my BSc, when I got my PhD, when I got my job, or when I got married. I probably won’t feel good enough even if I have a baby one day.

So I have defined a few mottos that I have been experimenting with as measures of success and self worth – so far they have been helpful but of course the experimenting will continue.

  • Fight jealousy and give others less power over me. Jealousy is a big issue for me – pregnancy announcements are very difficult (even though I do not wish baby loss on anybody), but also, if I feel low, others always seem to achieve more for less effort. But the sad truth is that other people’s healthy and happy babies won’t affect my future pregnancies and other’s miscarriages won’t bring my babies back either. Equally, other people’s successes or special skills do not lessen my own achievements and skills – they might just have chosen to put emphasis on different things in life than I have.
  • Be emotionally honest, to myself and others, and to keep learning. Living by this motto means that denying my own emotions, not exploring feelings and thoughts, not learning from them and communicating that to others becomes the failure rather than having them in the first place. Doing this will continue to build the kind of relationships I value the most. A friend once said to me that I allow her to be herself and share her inner world because I am openly sharing my struggles. She also said that those struggles make me an interesting and likeable person rather than diminishing my worth. Those are some of the most treasured compliments I have ever received.
  • Put emphasis on enjoyment in my life rather than success and validation. The things that give me the biggest sense of achievement are often the ones that I have enjoyed working on. For example handstands, climbing mountains, overcoming the fear of scuba diving, making pretty documents at work and crafty things. And the good thing is that I can ease off pressure now, because I have worked hard in the past and I have arrived in a financially secure position. I have shifted to valuing my job because of the day-to-day joys it brings (being outside, interactions with my awesome colleagues, colleagues form other organisations and landowners, lots of doggy cuddles, helping the environment, always learning more, being allowed to be me) rather than feeling unsuccessful because I  am not earning as much as mister and misses x.
  •  ‘Be myself, everybody else is already taken’ – no further words needed here.

I find other people’s healing stories often sound like this: ‘I was bad and then I realized X and now I am wise, doing well and never look back’. And maybe this sounds like that, too. But that is not true. I am fully aware that recognizing these things and putting them into my own very personal context is a very important step. But forgetting it all after a triggering event has occurred is so easy. I can’t go back in time, I can’t do a factory reset of my brain and I can’t control or predict what the future will hold. All I can do is keep learning and keep trying in the now. And thank my babies for helping me learn and grow a million times more than any of my successes have.

‘Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow”’ Mary Anne Radmacher – stolen from my friend Katie’s blog. Katie has taught me a lot by talking and writing about her own journey through Lyme disease.

Things that helped me

Choices Exeter Baby Loss Counselling.

Saying goodbye: a personal story of baby loss and 90 days of support to walk you through grief. Zoe Clarke-Coates. Also Zoe’s Instagram @zoeadelle

The baby loss guide: practical and compassionate support with a day-by-day resource to navigate the path of grief.

Miscarriage, what every woman needs to know. Professor Lesley Regan.

The power of vulnerability. Ted Talk by Brene Brown.

The lost tribe of childless women. Ted Talk by Jody Day.

Living the life unexpected. 12 weeks to your plan B for a meaningful and fulfilling future without children. Jody Day.

The subtle art of not giving a fuck, a counterintuitive approach to living a good life. Mark Manson.

13 Things mentally strong people don’t do. Amy Morin.

Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 2)

This is a Part 2 in a three-part guest post series. See Part 1 here.

Miscarriage number 2

The trapdoor opens a second time. This time, 6 weeks later, ‘I am sorry but the hormone levels have already dropped again’ was the sentence that opened the trapdoor again. But this time it lead to an even darker place.

Loss of hope, naked fear and sheer panic. The only way to describe my immediate responses to my second miscarriage is a complete loss of hope, naked fear and sheer panic – not just about whether I would ever have a baby or not, but whether the emotional pain would ever go away again and whether I will ever regain control over my life. I was in a state of panic for 3 days with hardly any sleep. I constantly switched from fight (destroying things in anger, anger at myself, the world and others who had repeatedly told me that I need to hope and that it will all be fine the second time) to flight (running through the park, hyperventilating) to moments of howling on the floor and repeating ‘I can’t do this anymore, I don’t want to feel anything anymore’ again and again in a loop. My husband looked after me with endless patience, restrained me, held me, fed me, ran with me around the park, told me to breathe, let my shouting wash over him – the miscarriages have tested our relationship and brought us together.

The calm that happened after that storm (helped along with medication) was relief that is indescribable. I slept. I just existed. Having come out of the state of panic was the most important thing. The thoughts about the miscarriage were still there, but their severity was numbed for a while. Having had the panics gave me permission to take time off and all life goals were reduced to remaining present and not going to the panicky place again. I knew after those three days that something big had changed, that we needed a longer break from trying and that I wouldn’t ever go back to my old self and old life.

The dome of fog. Grief after the second miscarriage was like living under a dome of fog that shaded out everything and separated me from the outside world. I could only concentrate on myself and my issues, they were always present. The old life had been blocked out. The world outside was still turning at its usual rate, but my world was turning in slow motion. Staying in the dome felt safe, the fog numbed me from outside triggers and I could digest what was already there. My life seemed on hold, slowed down from the usual business and being goal oriented. The aim was to get through every day. Slowly, the dome seemed to crack in places, letting some light in for short periods of time. It started lifting for bits of time when I could do something else and concentrate on something other than my pain. Slowly I could let little things back into my life and test how they felt, for example going outside, seeing people or going for a swim. I am forever grateful for the few people who stayed with me through the time I lived under that dome and shut myself away.

Breaking bad coping mechanisms. Number 2 marked a complete breakdown of bad coping mechanisms I had built up through my whole life. I have always struggled with the motto ‘you can only do your best’, instead ‘if I haven’t achieved yet, I just need to work harder’ has always been my coping mechanism. Not a healthy one, I know, and one which only works if I kept being hard on myself. An important aspect about that coping mechanism is the belief that I am somewhat in control of where I am going. I always worried what would happen if I got to a point when giving my best was simply not good enough. Well, that moment had now arrived. The NHS did not help. Further investigations are only done after three miscarriages. There was nothing for me to work on to improve the outcome next time. ‘Simply’ just try again, sit back, ‘try not to worry’ (the best advice ever given in human history) and watch the shit storm hit again.

Acceptance and controlling the controllable rather than the uncontrollable. Whilst I had no control over the baby situation, I took control over other aspects. Whilst everything seemed on hold and old goals had gone, I had the headspace and time to invest in my well-being. Counterintuitive to my old coping mechanisms, that meant taking pressure off rather than putting more on. I worked at myself to accept the concept of luck. Whilst others have a baby because they got lucky rather than working harder or having better bodies than me, I was unlucky rather than having failed. That then worked to my benefit with other aspects, too. My parents had saved money for me which I had never touched because I felt I hadn’t earned it for myself. Now I could accept that I didn’t need to have earned it all – I was just lucky. Having the savings as backup and realizing that if we can’t have children, we don’t need that much money, I managed to ease off my drive to save money all the time and went to 3 days a week. Instead of trying to control the uncontrollable – the baby project, I took control of the now and invested in the life now, have time to heal, allow myself to have time to do nice things and see the nice things in day-to-day life rather than chasing big dreams. We also went to Hawaii and fulfilled a dream about diving with Manta rays and exploring volcanoes.

Miscarriage support literature. I read everything I could possibly find about miscarriages: the latest research findings, personal stories, Ted talks, podcasts and support literature. There is more information out there than I expected. The power of all those was learning about the science of miscarriages when doctors are reluctant to discuss it, permission to feel how I felt because others felt similarly and benefiting from what others had learnt. Whilst talking to fellow miscarriage sufferers after number 1 was helpful, it wasn’t enough after number 2. Now I needed more depth to those conversations and struggled to find them. On reflection I guess other people who publish their stories have explored the depth of emotions to a similar extent, but I also do think that multiple miscarriages bring up more than single miscarriages and most people I know have had single miscarriages and now have healthy babies.

Gifts from my second baby. Living under the dome has taught me how to spend time with myself. Many people advised me to ‘look after myself’ after the first miscarriage and I had no idea how to actually do that. Now I had made the first steps in easing off pressure rather than pushing and kicking myself when I am down. My husband’s support through my existential crisis has brought us closer and made our relationship stronger.

Climbing out of the dark hole. Three months after the second miscarriage I had managed to climb up and look over the edge of the dark hole once again. We attended a ‘saying goodbye’ event at Exeter Cathedral. I would highly recommend going to one of these. Three months seemed like a long break, but I now recognize that I had not given myself much time to heal at all.

Miscarriage number 3 and the due date of number 1

Denial. Miscarriage number 3, at first, affected me so much less than the others. I thought it was because I had faced so many aspects of grief and failure already and perhaps had invested less hope and dreams into this pregnancy. I worked a lot of overtime. It was only denial – the pain and grief was only delayed.

‘Nobody gets a hero card’. I learnt a very important thing: whilst I felt strong because I didn’t have time off work throughout this miscarriage, it didn’t earn me any respect from others. That was a very interesting finding. After the other two miscarriages I had craved acknowledgement from others and been beating myself up for not being ‘strong’ but falling apart. Was that feeling of being weak and dealing with it badly just within me? I still don’t know and this question still is a frequent visitor. When I went back to work too early after my first miscarriage and said to my boss that I felt I needed to be strong and function, he said ‘no, you don’t,  nobody gets a hero card’ – I now understand what he meant.

The trapdoor opens a third time. The trapdoor opened up yet again in the week leading up to the due date of number 1. How was I going to face that day, having just had another loss? The feeling of emptiness and hopelessness was back. I was all too aware that I should have been off work already, anxiously awaiting the birth. I would already know the gender, the name. I would have seen the little face on a screen, heard the heartbeat, I would have already communicated with my baby via feeling the kicking, stroking the belly and showing it the sounds of the world, I would have bought those fabrics I love and made things for my baby. I should be in this weird moment, where any time, a new life will start.

It is my own responsibility to make myself feel better again – in that I am completely alone, nobody else can tell me how to do this, because I have to do it my way. I have never been good at dealing with my own problems on my own. That is where this really strong need to talk to others comes from and my comparisons to others. Their way didn’t work for me and that made me feel like I was a failure (hello again!). The strong feeling that others dealt with their miscarriages better than I have comes from that place, too. ‘Everybody deals with things in different ways’. Countless people have said this to me. It always seemed like an ‘empty’ saying to me, like saying something tastes different when it actually doesn’t taste as it should. My counselling made me realize that there are actually situations that I can deal with better than others. I know that is probably not a big surprise to you but it was a humongous finding for me.

Learning to distinguish between real friends and acquaintances. The understanding that I had to find my own way was terrifying. Does that mean that I am completely alone and that I shouldn’t talk to others about it, that I have been making a fool of myself for needing to talk as much and for oversharing all the time? No, it doesn’t mean that, but it meant that I also learnt a very important lesson: I learnt to define what good friendships are to me and therefore who are my real friends. I couldn’t be everybody’s real friend and not everybody I like could be my real friend. For me, real friendships are those in which both parties help each other find their own way through situations and share their inner world to a similar extent. Sadly that also meant realizing that some ‘friends’ are actually just acquaintances.

Am I going to be in the hole forever? The losses, the inability to carry a child (past the point of ever developing a heartbeat) and the sense of failure associated with that threatened to become my identity, it was all-consuming. Sometimes I could see myself from the outside and I always had this double loser badge attached to me: This is a woman only in shape, she does not function as a woman and can’t sustain pregnancies. Also, jealousy and self-pity were eating me up from inside. At best, a pregnancy announcement would send me tumbling down into the hole of grief about my babies and what I should have in my arms, or at least in my womb, right now. But let me be completely honest, at worst, a pregnancy announcement would highlight my failure, bring up anger that the other person is showing me up by easily doing the very thing that I desperately want but can’t do. I don’t want to be that person.

Climbing out, again. I really don’t want to be that person and also I recognized that I can’t live my life from now on in a constant loop of miscarriage – falling apart – coping by taking a day at a time – fighting my way back to some sort of normality – try again – miscarriage and so on. I also recognized that my other issues were there before the miscarriages and will be there whether I will end up having a baby or not. So I started working on myself and read self-help books – something my previous coping mechanisms of being busy and always striving hadn’t allowed me the time for. And time I had, as we had decided we needed a proper 6 month break. I also fulfilled myself another dream and went on a liveaboard dive trip around the Komodo Islands in Indonesia.

Continue reading: Part 3 (A way forward)

Multiple miscarriages: How they have broken me, changed me, and helped me to grow (Part 1)

Today I am pleased to present a series of guest posts from a good friend of mine, who is writing about her experiences with multiple miscarriages. Although miscarriages and chronic illness may seem like two very different things, we have found that many elements of our experiences, and the ways that they have impacted us, are actually quite similar. I am really delighted that she is sharing her story with us all.

Introduction and overview

A year ago today I had my first miscarriage. A year later, after 2 further losses, I am no further in this whole baby journey and still battling my way through the emotional and mental jungle. If anyone had told me a year ago, that I would spend this day having gone through 2 further losses and 2 due dates, I wouldn’t have believed that I could endure this.

A trap door opened with each miscarriage and I fell into a dark hole and worked hard to slowly climb out of the hole again, just to fall straight back in with the next miscarriage. The miscarriages have broken me, each in their different way, but in many ways I have come out of it stronger. It does not always seem that way; sometimes I get hit by a fresh wave of grief and am temporarily (seconds, hours or days) back at the very raw square one, worried I have to start all over again on the healing journey out of the dark hole.

Today I am sharing my reflections on what the miscarriages have brought up for me – so much more than ‘just’ the loss of a baby and each loss has brought up different things, challenged me in different ways and has also taught me new things. Why am I openly sharing something so personal, hurtful and unique to me? Well, miscarriages are mostly not talked about. In a world where one only posts about achievements and the beautiful moments in life, I want to be authentic and emotionally honest.  

I hope that I or my story can be a lifebuoy for other women and men in the future, whether they know me or not. The very few people who had opened up to me about their baby loss before it happened to me were my lifebuoy that helped me from drowning when the news sunk in – I knew who I could confide in, who would understand me, I knew I wasn’t alone. The ‘1 in 4 club’ only revealed itself to me once I openly talked about it.

I hope this post will give people a glimpse of what the emotional and mental landscape of somebody looks like who has suffered miscarriages. How would anybody know when this topic is so hushed up?

Writing is an incredibly useful healing tool for me. It helps me properly sort through things and writing it as a post makes me do it properly. Despite talking to many people about this, I feel as though I never get the opportunity to explain myself fully.

I have faced the process of grief head on, with every miscarriage and have processed all the individual aspects of it. I wasn’t being brave. Denial was no option for me, the emotions were too strong to be pushed away and my babies were too precious not to be grieved and talked about. My path through grief is unique to me. Many aspects linked to the miscarriages are very similar to my all too familiar triggers of low self-esteem, anxiety and depression, which probably intensified everything I was feeling.

One of the most important gifts my babies have given me is to break me enough to actually start addressing much bigger issues. Formulating my way forward and trying to live to those new principles has really helped me – obviously, still with regular waves of grief washing over me.

With the anniversary of the first miscarriage looming and several pregnancy announcements, the trapdoor had opened once again.  I was back in the dark hole with all the grief and associated emotions putting a heavy weight on my chest and making it hard to breath. What a set back! I was worried that all my ‘grief work’ had been for nothing and that I would always sit in the hole. So I started writing this. It helped. Last time I sat down and wrote for the due date of number 1, it felt like I had downloaded the mess from my brain, sorted it into something tangible and could then deleted it from the brain. I had a few months of breathing freer than before. The same thing happened again. Today, I actually feel good, even thought I was convinced two weeks ago that I would not be able to cope with the anniversary.

Keep calm and keep climbing. All I can do is try and try again to climb out of the dark hole, every time I have fallen in, whether it is caused by further baby losses or triggers of low self-esteem, anxiety and depression. And maybe, over time, I might even learn to recognize the trapdoor before I fall into it and acquire the skills to walk around it.

Miscarriage number 1

The first time the trapdoor opened. I booked a private 9 week scan, too impatient to wait until 12 weeks. I thought it could ease my anxiety whether everything is going alright. Despite worrying about it, I couldn’t stop myself from imagining what it might feel like to see a heartbeat, almost crying happy tears in anticipation. Instead, we heard ‘I am sorry, there is no heartbeat’. The sentence that opened a trapdoor.

Permission to grieve? How far does a baby have to be developed to be a baby? I struggled with the concept that there hadn’t been a recognizable baby shape, more a lump of cells that I had lost and that meant I wasn’t allowed to be upset. It goes hand-in-hand with a lot of (admittedly well meaning) ‘at least it was early, at least you hadn’t seen the baby yet’ statements. People from older generations always say to me that it would have been easier back then without early scans, because without having seen the baby one wouldn’t build a bond with it. Why was I so upset about losing something the medical professionals at best call ‘products of conception’? Because for me, it was my baby, a lost future, a loss of dreams and imagined pictures, from the moment the pregnancy test was positive. What helped me most was people verbally acknowledging the severity of what I was going though, it gave me permission to feel as I was feeling. The first time the baby-loss councillors actually said to me in words ‘you have lost your baby’ was incredible. Finally, I was allowed to call it my baby!

Failure. My body had failed me. I had always been able to trust in my body when I needed it to function and my good physical health was what in my mind made up for my suffering mentally. Despite all the worrying, I had started to believe in my body with every day that went by without bleeding. My body had lured me into a false sense of security. Being pregnant had helped me to take pressure from myself to achieve, because my body was busy doing more important things. That was a much softer and comfortable world to live in. The worst feeling for somebody with low self-esteem is having had confidence in themselves where no confidence was due. Not only my body had failed, but I had failed to anticipate the failure, making me an even bigger failure. Failure, failure, failure.

Shame. There was a very strong feeling of shame, complimenting that sense of failure. At first, I didn’t want people to know as they would know that I failed, when for most people having a baby seems a natural and easy thing to do (from the outside or how people want to portrait it). People don’t talk about their miscarriages for many reasons personal to them. Many admit to ‘failure’ only to others who admit to miscarriages first or once they have a baby in their arms. The general advice is to not tell anybody until after the 3 month scan after which the risk of miscarriages is lower.      

I would like to note here that I am a person of double standards. I would never consider anyone who has had a miscarriage, health issues or anything else happen to them as failures, ever. But somehow I have to comply with higher standards than other people and am much more compassionate with others than with myself. The feeling of shame remained, but the need to talk and get support was much stronger. I was going through the hardest time in my life and needed to talk, I needed time off from work. Also it is simply not in my nature to be withdrawn and I am not capable of bottling things up – I need to talk, I always have and I always will!

One million what ifs and the feeling of guilt. Did I do something wrong? Have I killed my baby? Those few glasses of wine when I didn’t know I was pregnant? That time I didn’t land softly when doing acroyoga? Did my worrying about a miscarriage kill my baby? It is so much harder to accept something didn’t work when we don’t know what actually went wrong – that also means that there is no way of trying harder next time. I know that ‘it wasn’t meant to be’ is a comment that is supposed to take that guilt away, but it always made me wonder whether that meant that my physical and emotional pain wasn’t meant to be?

I am weak. Not only did I feel shame about the fact that I had ’mis’ carried my baby, but I also felt ashamed about how I dealt with it. Quite often I felt pressure from people to be positive and in a way sometimes felt like I wasn’t allowed to grieve. People want to say something positive to help (including me), but it actually had the opposite effect. It minimised the situation and therefore removed my permission to grieve. This feeling of having dealt with it badly is a really hard one for me to fight. I have always struggled with a need to belong, to be understood by others, get validation from others, fear from being alone and ultimately being judged as a failure (by others and myself).

Climbing out of the dark hole. Eventually, once the physical aspect had finally been resolved with an operation, I managed to find my way back into a life that somewhat resembled my life pre-loss. The first proper day back at work felt great. I found my way back to my hobbies pre-loss. I had hope the next pregnancy would work out, like it seems to with so many people who have had one miscarriage. I was crazily impatient to try again and try harder ASAP – a coping mechanism we will get to soon.

Gifts from my first baby.  I have learnt what a big support network I have around me. I am so grateful for my husband and for having friendships that allow me to be myself and share my issues. I am so glad for having such a great work place. Most of my colleagues are good friends, everyone was supportive because I gave them a chance to be by telling them what had happened and how I was feeling. My boss was incredible, he advised me to take as much time as I needed and when I came back way too early and was crying in the corridor, he took two hours out of his working day and drove me home. I could cry now just thinking about such kindness. I am also very thankful to the ladies at choices pregnancy centre, who helped me work through it all.

Continue reading here: Part 2 (Miscarriage 2 and Miscarriage 3)

How chronic illness affects everything… yes, everything

Recently, I have been feeling a little disconnected from the world. There is so much about chronic illness that anyone without chronic health issues would struggle to understand, that I find it difficult to really, truly connect with people. I know that I can’t expect anyone without chronic health issues to understand. I also know that even by talking (and writing) about how chronic illness affects everything, I may be creating further barriers between you versus me; us versus them; healthy versus sick. But I am ok with that, because this message needs to be heard.

Chronic illness affects EVERYTHING. I mean, absolutely everything. Before I had health issues, I could never have comprehended the scale of it. I could have understood that it must be crap to feel ill all the time, that it must take a toll on your mental health and your ability to do the things that you enjoy. I think that most people can understand that. But the day-to-day impact of chronic illness is unimaginable. This message is so important. It is important for others with chronic illness to hear this – it is hard, and I hear you my friends. But it is also important for those without chronic illness to hear this – the magnitude of chronic illness is immense and so, if your friends who are sick seem to be struggling under the weight of it all, this might just be why.

Ok here are the things I can think of, off the top of my head, that are affected by chronic illness (for me). Some are pretty obvious. Others are darn right peculiar.

  • The beauty products I buy – must be organic with no parabens, SLS, phthalates, silicones etc. The skin is the largest organ in the body (at least that’s what we were taught at school – is that really true?). Well anyway, we have a lot of skin, and what you put on your skin is absorbed into your blood stream. I actually think that everyone should avoid standard off-the-shelf makeup and toiletries but, if you have pre-existing medical issues this is perhaps even more important. This means a limited number of shops I can get these products at and of course, they are a lot more expensive. The most painful product for me is suncream. Holy moly, non-toxic suncream is expensive!!
  • The jobs that I can apply for. This one I am really feeling of late. I am coming to the end of my PhD, and, like most PhD students, I am freaking out a little bit about what I’m going to do next. But, unlike most PhD students, I need a job that has flexible hours, the ability to work from home, a boss that supports those things, and where I can spend a decent chunk of my work time doing things like writing or reading, that don’t require communication or travel or other things that are very energy-zapping for me.
  • The dental work that I have done. Yes, seriously. I had a tooth extracted and a bridge in its place last year, when my dentist just wanted me to redo a root canal. Alas, root canals can apparently (mostly anecdotally) cause issues for people with chronic health issues and to be honest, whether that’s true or total beloney it doesn’t really matter; if there’s a risk of it making my health issues worse, I can’t do it. So, yeah, tooth extracted.
  • What I do in my spare time. Well yes that’s an obvious one. Mostly my spare time is spent doing restful activities like reading and watching tv, combined with gentle exercise when I can manage (I.e. walking), self-educating about all things health related (you would not believe the random shit I know), and cooking. Because everything has to be home cooked from scratch.
  • Where we go for dinner. On the subject of food, there are now, I think 3 restaurants where we can comfortably eat without it being an incredibly stressful experience. Places that have a flexible menu and staff that are patient and understanding enough to deal with “I’d like this meal but without the chips, without the sauce, without the bread, and with a salad on the side please!” Every now and then, if it’s a special occasion, I will eat at a restaurant that I don’t deem “safe”, but I will pay some heavy consequences afterwards.
  • Where we buy our food shopping. We have two stipulations: 1) we have to be able to order home delivery, because the odds of me being well enough to manage a supermarket trip are not that great (so that rules out the cheap supermarkets); 2) they have to have a good selection of organic meat and vegetables, because that is essentially all we eat.
  • What food we buy. No ready meals, pizzas or chips here. There is virtually nothing we can eat that is easy. Everything is cooked from scratch. Even things like gluten free bread are so full of crap that I don’t really want to touch it, plus they normally have either rice flour or potato starch and I can’t tolerate rice or potatoes so… yeah.
  • What time I go to bed. Because I need 9 hours of sleep and even a couple of nights without it starts to affect me. 9pm is my bedtime, by the way.
  • What time I get up. Because meditating in the morning is really not optional if I want to try and keep my nervous system calm, which, of course is important for healing. And because rushing to get ready is about the worst thing for anyone’s nervous system. My morning routine is 2 hours long.
  • How often I see my friends. Not very often, in case you were wondering. When I am well enough, and when I have had a good enough patch of health that I am at least partly on top of housework and other life commitments. Or I’m so unwell that I’ve given up all hope of housework or other commitments, and I have a friend that is kind enough to come see me even though I’ll be in bed the whole time (I currently have one friend who will do this – I hope she is reading, she is a gem).
  • Who my friends are – people who I like and who like me but who are also patient and understanding, and know that plans are likely to be cancelled last minute at least 50% of the time. Many of my closest friends now are people that I have met and communicate with online, rather than in-person. I really value the internet and the social opportunities it provides for so many people who would otherwise be very isolated.
  • Our sex life. Sorry to the prudes reading this but, yeah, chronic illness affects this shit.
  • How we use our holiday leave. Most of our annual leave is used on doctors appointments. I am lucky I have a flexible job so that my routine appointments don’t need to involve official leave. But the bigger appointments require annual leave, and our holiday savings have been used on medical trips in the past.
  • Where we can travel. Somewhere where there are restaurants that cater for complex dietary needs; somewhere where everything is within a short walking distance; somewhere where we can take a small suitcase worth of medical stuff. Hence why next year we will be revisiting our favourite Greek spot that ticks all of these boxes!
  • The books I buy. This isn’t a bad thing by any means – I looooove books! But mostly they are health related books (which also isn’t a bad thing in my eyes – I love to learn about the body!).
  • The house we purchased – we were previously renting a mouldy house, which can have hugely detrimental health effects, particularly for people with pre-existing health issues, and for approximately 25% of the population who have genetic mutations that prevent them being able to effectively detox mould spores. We were so worried about mould exposure that we bought a new build, almost exclusively for this reason.
  • The arguments we have as a couple. Our relationship is pretty solid and I think my love will agree that chronic illness has made us infinitely stronger, both individually and as a couple. But oh Christ it is so hard on a relationship. He has to pick up more chores when I’m sick; I feel guilty when I can’t do stuff; he feels sad and stressed when I’m ill; I feel sad and stressed when I’m ill; we have to try and support each other while both struggling to cope ourselves. To every couple out there affected by chronic illness, I salute you.
  • How we spend our sundays. About half of our Sunday is spent food prepping for the week. Lunches, snacks and sometimes breakfasts. Because nothing can be bought on the go.
  • Our financial situation. This is largely unspoken about in the chronic illness world, or maybe just in the world generally. But I have no shame in saying, that we spend a fortune on stuff relating to health. Mostly food, because of all the reasons above. But also – beauty products (that darn suncream), supplements, having a cleaner (which, I appreciate, might seem like a luxury, but is actually a necessity), buying random things like water filters and paying for dental extractions! And these are just the day to day costs. We get substantial support with my treatment costs, which is the only reason we can afford the treatments I am having.

The magnitude of chronic illness is unthinkable. To those of you reading this who also are affected by chronic illness, I hope you understand that you are not alone. Keep going you brave, brave warriors. To those of you reading who are not affected by chronic illness, thank you for reading! Thank you for taking an interest. And thank you to those of you who provide support to me or to anyone else with a chronic illness. We could not do it without you.

Taking ownership of my own healing: exciting or overwhelming?

If there is one thing I have learned on this health journey, it is that you have to take ownership of your own healing. There are so many facets to recovery from chronic illness and the truth is that the crucial elements will be different for everyone. And unfortunately, while there are some great conventional and alternative medical practitioners out there, even in the Lyme community the vast majority of them only know how to target a few elements of healing. If you want to understand the whole picture, you have to find your own path.

In many respects, taking ownership of your own recovery journey is very rewarding. It encourages you to tune in to your body and really listen to the messages it is providing; something which we are very rarely encouraged to do in our busy western world. It seems that what society values most is the ability to “push through”, to be super(wo)man and just keep on going, no matter how much you feel like crap. If something hurts, take a pill, push it down and hope it goes away. We all feel a bit crap sometimes so just suck it up and get on with it.

But I really don’t believe anybody can continue that way forever without paying the price. For me, I have no doubt that that attitude paved the way for chronic illness. But when there is no-one there to give you a pill to fix it anymore, when conventional medicine tells you it has nothing left to give, then you have no way of pushing it down and hoping it goes away. No matter how hard you try, you can’t push it down, and it sure as hell isn’t going away. And so begins the process of noticing, of listening and trying to understand what is really going on inside.

Recently I have been delving into the biochemistry and genetic factors of chronic illness, which happened totally by chance. It has been pretty fascinating and I have been mind-blown by some of the things I have read. I know that I am so fortunate to have access to medical research through my work, as well as enough scientific knowledge to be able to (mostly, at least) make sense of what I am reading. And I love to learn, especially when it comes to the human body, so in some respects I have enjoyed this process, and I have taken a lot from it that I have been able to apply to my own situation in order to hopefully aid my healing.

But on the other hand, it is massively overwhelming. The sheer amount of information I have had to learn in order to try and understand what is happening in my body and why I might not be recovering, is enormous. I am feeling the familiar pull of wanting to learn as much as I can in order to help my healing, but also knowing that I need to not get carried away into a place where it becomes all-consuming and feeds into that cycle of fear, panic and helplessness that is only ever one small step away. If I just read one more paper, look at one more website, order one more book, perhaps I’ll have all the answers. But there is always another paper, another website, another book. It is never-ending. And before you know it you are spending hours and hours researching in the hope that you might learn something beneficial, but really, it is all a stab in the dark and you don’t know what the hell you are doing.

I want to share with you a story about the particular rabbit hole I have taken myself down lately, to illustrate how this happens.

A few weeks ago, I started tracking my heart-rate and heart-rate variability on a regular (daily) basis because I sensed I was reacting to some foods in my diet, and HR/HRV can be used to monitor your body’s stress response, including in relation to diet. My HR was consistently really high, but as I have become so trained to do, I told myself it was no big deal and probably didn’t mean anything. It was only when I mentioned in passing to my boyfriend that my heart-rate, at 90 beats per minute, was “the slowest it’s been all day”, that his reaction told me this was not normal and I should maybe be a little bit concerned.

So began my googling. I searched online and in a few facebook forums, and came up with a few ideas of what might be causing it. One of those ideas was a supplement that I had started taking a few months earlier, called N-Acetyl-Cysteine. There was one comment from one user in one facebook group who said NAC gives them tachycardia (high heart rate). So I decided to take a temporary break from the NAC to see if it had an effect and after only two days, my HR had normalised. It was around 65bpm at night-time, and anywhere from 70 to 90 bpm in the day-time (normal for me). While I had been taking the NAC my night-time pulse was averaging 80bpm, and ranging from 85 to 130 bpm during the day-time, without doing any exercise other than walking around.

While it is great that I identified the NAC as the source of my tachycardia, it is also kind of terrifying. Presumably my heart-rate had been high for months, but I hadn’t even noticed until I started tracking it for unrelated reasons. I am not a cardiologist, but I presume that having a constantly high heart rate 24/7 for months on end is probably not healthy for your heart. And yet, NAC is so commonly discussed as a helpful supplement for those with Lyme and other chronic illnesses. Exactly why we all need to take ownership for our own health and not hand the responsibility over to anyone else, no matter what their qualifications. NAC might be a really helpful supplement for some, and it might be a standard part of many protocols, but it could also be really harmful.

But my little rabbit-hole didn’t end there. I listen to lots of health podcasts, partly because I find them interesting but also because I pick up lots of helpful tips for improving my health. Around the time I was learning about the NAC/tachycardia link, I happened to listen to a podcast about genetic defects in patients with Lyme disease, and NAC was mentioned. Naturally, my ears pricked up. The interviewee (Bob Miller) said there is a genetic variant that is common in Lyme patients that, because of the impact the variant has in the body, will cause more inflammation if those patients take NAC supplements. Mind. Blown.

So here is what I have learned about NAC and why it might have been counter-productive for me to take it. This gets technical, but there is a point to my story, so please bear with me.

  • N-Acetyl Cysteine (NAC) can be helpful as a supplement because cysteine converts to glutathione in the liver. Glutathione is the “master antioxidant” that is responsible for liver detox, which is important for everybody but especially those with chronic health issues who, for example, take lots of medications, have chronic infections etc etc that all need to be removed from the body. Also, glutathione is anti-inflammatory and supports immunity. Ok, so glutathione = good guy.
  • There are a set of genes related to the conversion of cysteine into glutathione in the liver. Defects (aka variants/mutations/SNPs) in these genes mean that the conversion of cysteine into glutathione is impaired.
  • Patients with chronic Lyme disease are significantly more likely to have defects in these genes compared to the general population (anywhere from 1.15 to 30 times more likely, depending on the particular gene).
  • If you have defects in these genes and you supplement with NAC, you are pushing a pathway that is malfunctioning. You are adding extra cysteine into the body, but since that cysteine cannot convert to glutathione in the way that it would in normal circumstances, you end up with a whole bunch of extra cysteine that is effectively “stuck”.
  • This excess cysteine combines with iron and oxidises = oxidative stress, which causes inflammation and essentially makes you feel terrible.

As I said. Mind. Blown.

This is awesome, I have now learned a bunch of cool stuff about the human body and I have a potential explanation for why NAC doesn’t agree with me – it is likely that I have the genetic variant described above. Not only does this confirm that I probably shouldn’t take NAC anymore (just in case the heart-rate wasn’t message enough), it actually gives me information about my detox pathways that I can work with. For example, in the podcast I was listening to, they said that for patients who have these issues, supplementing with a particular form of glutathione called S-Acetyl-Glutathione (which actually helps cysteine convert to glutathione in the liver), will be beneficial. Many Lyme patients supplement with other forms of glutathione, but apparently this can also make you feel worse if the cysteine-glutathione pathway is impaired.

So here leads me to the title of this blog post. I am super excited by all this new knowledge I have acquired, partly because it has given me actionable steps that might help to reduce inflammation and improve my liver’s ability to detox, but also, because I am a massive nerd.

But also, WTF? I mean, seriously, what the actual F? I am just a person with chronic illness who is also doing a PhD and has a boyfriend and likes yoga and has pet rabbits. I am not a biochemist, nor a geneticist. Nor do I have hours and hours worth of free time to be burrowing into rabbit holes about such things as N-Acetyl-Cysteine, S-Acetyl-Glutathione, genetic defects or oxidative stress. And yet here I am, firmly down this rabbit hole having, somehow, spent those hours and hours that I don’t have, teaching myself about all those things.

I learned all of this just from one supplement that I happened to notice by chance was causing me tachycardia and because one man on one facebook post mentioned the same thing happened to him. Imagine all of the other information out there that I don’t yet know about. That I will probably never know about because let’s face it, one person who has a job and is attempting to live a normal life on top of chronic illness cannot possibly learn it all. Exciting, or overwhelming?

Taking ownership of my own health

I am delighted to present to you all a guest post from fellow scientist, Lyme patient, and dear friend Niamh. In this post she discusses the challenges, as a scientist, of moving away from allopathic medicine in her quest for health and healing.

Niamh is a passionate researcher, writer and soul searcher. She seeks to impart greater understanding of chronic illness and to defy the social stigma which surrounds it.

You can find out more at her website: lymesoul. Enjoy!

A Change in Perspective

​As a scientist, I have always been highly sceptical of any kind of alternative or “holistic” treatment. As a chemist, I have huge faith in the efficacy of pharmaceuticals and, before reaching a life-altering juncture in my illness, my life plan was to design therapeutic drugs. I had been lucky for most of my life to reside on one side of the fence: a far-removed world of Molecule Construction, seeking out new and fabulous structures which could modulate a specific biological response. My mind was occupied with the purely academic side of “making a difference” and gaining recognition in something which might just wipe out some uncontroversial, life-altering disease.  The notion of illness was just that: a notion. A concept which I could conceive of on a purely intellectual basis. I had never felt first-hand the dramatic effects of a life-threatening disease; more specifically, I had never even considered the effects of grappling with an illness for which there was no known cure, little recognition from the established medical community, and consequently little respect for the suffering patient. When Lyme disease shattered my life, or so I believed, I saw only darkness: I was reminded each day of everything I had lost, from my mobility to my own cognitive function and ability to process information. Lyme chose rather indiscriminately and did not care one iota that I was a scientist or that I had a solid life plan. And just like that, I was standing on the other side of the fence, no longer capable of operating in the world of Molecule Construction, feeling utterly abandoned by our allopathic medical community. Just like that, I experienced for the first time in my life, the devastation that disease wreaks; I was the patient for whom I had once aspired to design a life-saving treatment. But now and for the rest of my life, this will no longer be a concept, but rather an earth-shattering reality. It takes time to readjust and to reorient oneself when one has completely lost one’s balance; but I no longer view my disease solely within the context of lack. In fact, there is one truth which I know in the very fibres of my being, a reality which I will own forever:

I will never stop being a scientist.

This disease may slow my path or set obstacles along the way. It may not present a smooth thoroughfare, but my progress will not be impeded. And now, thanks to Lyme, I have experience of both sides of the fence. Now, I feel blessed to know first-hand what it is like to reside in the world of Molecule Construction and in the world of the disabled patient. The difference between then and now is that today I am imbued with an even stronger desire to relieve the pain of those who suffer, often without hope, without a cure for their disease, and without medical recognition. This is not something which Lyme disease robbed from me. This is a gift.

Alternative Approaches to Lyme Disease Treatment 

This new chapter of my life has been somewhat transformative through the empowerment associated with claiming ownership of my own body and its intrinsic capacity to heal. Over the course of ten months, I tried everything within my reach to combat this disease, ultimately discovering the power of a more holistic, naturopathic approach to treatment.

My initial decision was to undertake a treatment protocol which relied heavily upon pharmaceuticals, primarily antibiotics, prescribed by one of the most well-established Lyme specialists in the United States. During this three month period, I deteriorated significantly to the point where I was bed-bound and unable to perform daily tasks. Following a brief period of hospitalisation, during which the complete lack of knowledge surrounding my disease became excruciatingly apparent, I made the radical decision to terminate all pharmaceutical treatments and to seek alternative methods for restoring my health. At this point, the lowest point in my illness, I spent my days researching chronic Lyme disease and any treatments which might potentially provide relief. My research brought me to the Hero and Heroine of my story thus far: Stephen Harrod Buhner, an herbalist specialising in Lyme disease treatment, and Dr Terry Wahls, a physician who reversed her diagnosis of secondary progressive multiple sclerosis through the development of her own targeted nutritional programme  (The Wahls Protocol).

An excellent account by Dr Terry Wahls on how she achieved recovery and the resetting of damaged mitochondria through diet: Minding Your Mitochrondria

Another three months passed by, during which I devoted myself to the self-administration of a tailored Buhner-inspired herbal protocol, in combination with a radical Wahls-inspired nutritional programme designed to reverse immune dysfunction.

During this time, I have observed dramatic improvements in both my physical and mental capacities, I have transitioned from being virtually bed-bound and severely underweight to gaining sufficient strength and stamina to leave the house quite regularly. I have a long journey to full restoration, but I owe these improvements to embracing a new healing paradigm, an approach which might once have confounded me as a scientist. In the absence of knowledge and support of my disease from the allopathic medical community, I have taken ownership of my own body, my own healthcare, and my own intuitive capacity. If there is one thing this journey has taught me so far, it is this:

You know your body better than anyone on the outside.

If you self-educate and become an expert in listening to and hearing your own body’s cues, I am beginning to discover that you can heal physiological damage on a cellular level. For example, I am intrigued by the concept of restoring diminished mitochondrial efficiency using food as medicine, and am enjoying the benefits of increased energy through strict adherence to a ketogenic diet. As scientists, I believe strongly that we must remain open-minded, being willing to make an informed judgement based on empirical results as opposed to being trapped by certain preconceived logic.

​I hope to share more of my experiences relating to herbal medicines and the Wahls-inspired ketogenic diet, but in the meantime, I feel privileged and inspired when others share with me their experiences of becoming executives in the provision of their own healthcare.  Don’t hesitate to contact me…


Healing from chronic illness: from full-time job to full-time life

Healing from chronic illness takes a lot of work. It takes time, research, and a whole lot of patience (transferable skills thank you very much!). Let’s take today as an example. It is Friday morning. I have a long list of things I need to do for my “actual” job (aka a full-time PhD). But I woke up this morning and decided that I needed to do some detoxing. This is very important for most people with chronic illness, but especially so when you are killing off infections such as Lyme because killing infection releases toxins into the body, often at a rate faster than the body is able to process and remove. So, detoxing is important, but it’s also time consuming. One of my preferred methods of detox is to take an Epsom salt bath, which I try and do at least a couple of times a week.

So this morning, Friday morning, I decide to take an Epsom salt bath. There’s not much you can to do be productive while you are in the bath so I decided to read my book while I was in there. I am currently reading Radical Remission by Kelly A Turner. Sidetrack – this book is amazing and I highly recommend it. Kelly is a researcher who, for her PhD, interviewed people who had had “radical remission” from cancer diagnoses that had very poor prognoses. She asked people to talk about the factors they thought contributed to their remission, and the book describes the top nine factors that people described. It is specific to cancer but honestly I think healing is healing, and the book is very relevant to anyone who is struggling with their health. Even if you don’t struggle with your health, it’s an interesting read.

So yes, I am in the bath reading my book, and both of these activities are related to my health. If I hadn’t struggled with chronic illness I wouldn’t be doing either of these things.

Then I get a message from a friend asking if I would like to join her for a dog walk at lunchtime. And I think it through. That PhD to-do list isn’t getting any shorter while I lie there in the bath reading my book, and it isn’t going to get any shorter if I go for a walk either. So I consider saying no. But, I haven’t moved my body much recently and that isn’t good for anyone’s health. Walking is one of my preferred forms of exercise because it is gentle enough not to over-stimulate my sensitive nervous system, it gets me outdoors in nature breathing in fresh air, and it helps to stimulate lymph flow which is good for the immune system. Plus, I get to socialise and have some time with dogs which is probably one of the best things for my health (I mean, I literally want to cuddle dogs All. Day. Long.) So I weigh it all up. In the short-term, it is best for my PhD if I say no to the dog walk, but best for my health if I say yes. A contradiction that in times gone by would have caused me a lot of stress. But really, it is a no-brainier, because when I am healthy and strong I am able to work much more productively on my PhD anyway, and I can always spend Friday evening catching up if I feel able to. So in actual fact, by taking time out to do what is good for my health, I am also doing what is good for my work and home-life too.

I say yes to the dog walk.

And I am lying there, still in the bath, reflecting on how it will probably be about half of my Friday taken up by a bath and a dog walk – things I am doing for my health. And a year ago this would have freaked me out. How can I ever have a normal life if I have to take half the time out of my working day just to support my health? It’s so unfair that I have to spend so much of my time doing things related to my health when most people would be able to do whatever the hell they wanted with their time without having to consider their health. For all the normal people out there (whatever is a “normal” person anyway?!) health is just a given and not something they have to consider when they weigh up every single decision in their day. How on earth can one person cope with chronic illness when it is basically a full-time job, on top of an actual full time job and all the responsibilities at home and in the maintenance of relationships with partners/friends/family?

That’s what the old me would have thought. And the thoughts are right there at the surface so I could easily go back to that place of feeling overwhelmed and like a victim and how it’s all so unfair, this full-time job of having chronic illness.

But then the realisation hits me that this no longer feels like a full time job any more. I can’t WAIT to join my friend for a dog walk, and I am loving this bath. How lucky I am to lie here for half an hour in the warmth and read this book which is so fascinating and inspiring. And if I’d never have struggled with my health I wouldn’t be doing these things. I wouldn’t be prioritising what is good for my body and my mind and my soul. I wouldn’t have learned that health is so precious because like we all do when we are healthy, I’d be taking it for granted.

And I realise that this isn’t a full time job for me any more. It is just my life. I choose to take a bath because I know that it helps to support my body in the healing process; I choose this book because it is totally fascinating to me and maybe I can learn something from these stories; I choose to walk with my friend because I know that it will nourish my mind and my body.

Allowing my body to heal and striving to be truly healthy for the rest of my life, is not a job. It’s not something I have to feel like a victim for or that I need to wish was different somehow. Wanting the very best for this precious body of mine is just how life is now. Prioritising health is my life. And what a beautiful life that is.

An update on my Lyme journey

It’s been two years since I was diagnosed with Lyme disease and it feels like a good time to write an update on how things are going. Apologies for the long post; there’s a lot to say.

Lyme disease treatment

For those who don’t know, I have been having treatment for Lyme and coinfections at a specialist Lyme disease clinic in Washington DC. The decision to go abroad was a very big one and, obviously, the costs involved in that are pretty huge. But, as everyone in the Lyme disease community knows, there is an unthinkable lack of disease knowledge and awareness in the UK, particularly in the NHS, but even to a lesser extent in the private sector. Receiving treatment in the UK, certainly with antibiotics, is pretty much impossible unless you see the tick, present with a bullseye rash and flu symptoms and have a positive NHS test, and even then, treatment is by no means a given. I had been ill for years with an array of weird symptoms and had already had many bad and, to be frank, abusive interactions with medical professionals, so I knew that seeking private treatment, and seeking it abroad, was the right decision for me.

I have been under the care of this clinic in Washington for about 18 months and boy, it has been a tough road. A couple of months after I started treatment with them, things got really, really bad. My physical symptoms were flaring left, right and centre; I was gaining new symptoms; and, worst of all, I became very severely depressed. I suffered with really bad insomnia and I spent most nights crying about how awful I felt, how much pain I was in, and how I couldn’t see a way out of it all. I felt like my brain and my body were on fire. Me and my boyfriend were recently reflecting on how things were for us at that time, and honestly, I don’t know how either of us coped. He had to deal with me crying, sometimes for hours at a time, knowing there was nothing he could do to make things better. That guy has the patience of a saint.

But 2018 has, on the whole, been a year of slow, steady recovery, which I attribute to several things.

In terms of my Lyme treatment, I have been treating with pulsed antibiotics for 18 months. That means I take several different antibiotics for a set period of time, followed by a period of not taking them. This approach is believed to “trick” the bacteria, which are very good at hiding from the immune system under conditions of threat, for example when antibiotics are present. The breaks in treatment cause the bacteria to come out of their hiding places, at which point we hit them again with more antibiotics. A pulsed approach is also aimed at improving the host’s (i.e. my) immune system in learning to deal with the infection by itself.

I do believe that antibiotics have a part to play in chronic infections and I am sure they are part of the reason why things are improving for me. But I am also increasingly of the belief that recovery from Lyme disease is about more than just kill, kill, kill.

The Gupta programme

In January 2018, I started a “brain retraining” programme called the Gupta programme, which is designed for Chronic Fatigue Syndrome, Fibromalgia, and other chronic health conditions. In the chronic illness community you’ll often hear people using the phrase “game changer” and for me, the Gupta programme was my game changer.

The overall aim of the programme is to reduce the ongoing fight or flight response that people with chronic illness tend to experience, in order to calm the system and thereby strengthen the immune system and allow the body to heal. It involves several different elements but the core approach is a) a series of techniques to break thoughts that are focused on illness and symptoms (“I’ll never get better”, “I feel so horrendous”, “I can’t cope with this” etc etc), and b) mindfulness and meditation.

This programme was a massive eye-opener for me. When I first started using the techniques, I noticed that I was having negative symptom- or illness-related thoughts ALL. THE. TIME. As in, hundreds of times a day. When I felt ill, the thoughts were about how awful I felt and how long this would last and what might I have done/not done to cause a symptom flare today. When I felt well, the thoughts were about how long it would last, how much I had to do before the next flare came around, and general worry about the illness. Although understandable, these kinds of thoughts serve no purpose other than to increase my stress and anxiety, stimulating the fight-or-flight response and making healing much more difficult.

Within a few weeks of using the programme these thoughts were cropping up much less often and I found that my mental health benefitted enormously, but I also had some huge gains in terms of my physical symptoms. I got a bit lazy with my use of the techniques over the summer but I have started using it in full-swing again, to great benefit. I really believe that this is the key to health and healing for me and that if I continue to use these techniques alongside the other things I am using to both kill the bacteria and support my body, that I will recover.

Meditation, mindfulness & pacing

I have meditated on and off for a long time, but the Gupta programme really helped to show me how important it is for those of us with poor health (and, to be honest, everyone with good health) to take the time to slooooooooow down. I now have a twice-daily meditation practice and whereas in the past meditation could sometimes feel like a chore, it is now something I look forward to each day. (If you are interested to know what meditations I use, I have details of the ones I have found helpful on my new “Resources” page – click here)

As well as sitting down and actively meditating, I am also learning to live more mindfully day-to-day. This is a part of the Gupta programme and this has quite honestly been life changing for me. I never even realised before that I spent every single second of my life rushing. I thought fast, I walked fast, I spoke fast. Cooking dinner – do it quickly. Reading a book – do it quickly. Having a shower – do it quickly. This, my friends, is stressful. It is stressful for the mind and it sure as hell is stressful for the body, especially a body that is trying to heal from years of chronic infection.

This is a part of the Gupta programme that I still struggle with. I have days where I manage to slow things down and other days where I don’t even realise until I get into bed that I’ve been rushing, mentally as well as physically, all day. I will get there, but this is a habit of a lifetime I am trying to change!

Fertility & hormone balance

Ok, this is a biggy and I suspect it will have its own blog post in the near future. For now, let me just say that my 15 years or so of infertility appear to be reversing. At age 27 I had oestrogen and progesterone levels of a post-menopausal woman. I haven’t ovulated once (as far as I know – but I’m pretty certain) since I came off the pill about 4 or 5 years ago. That is, until last month. I ovulated for the first time in ~15 years, just a few months after my 30th birthday. And, my hormone levels are now normal. This is absolutely HUGE and a sign to me that my body is healing, little by little.

Other symptoms that are changing

There are various symptoms that I am slowly losing and it’s nice to actually write this down because often we get so caught up in the symptoms we still have to work on, that we forget how far we have come. I am gradually gaining more energy. I still have crashes, mostly when I have done too much or allowed myself to get stressed. But on my “good” days I now have what I consider to be the energy levels of a normal person. Woohoo!

I sleep about 9 hours a night. This is more than I’d like but a healing body needs a lot of sleep, and I am letting myself sleep as much as I need, as often as I can. Still, 9 hours of solid sleep is so much better than the 1-2 hours I was getting last year.

I am not depressed. In fact, my mood is probably better than it’s ever been and I feel genuinely happy and contented with my life right now, even with the remaining symptoms that I have. There aren’t enough words to describe how amazing that is.

I am gaining weight. When I first started treatment last year I lost a lot of weight, and got down to 7st 10 (108lbs), which is the lightest I’ve been since I was a teenager. Over the last 6 months or so I have been gradually regaining weight and am now firmly within the “healthy” weight range for my height (though a few more pounds for some extra padding would suit me just fine!).

Most of my other symptoms (headaches, fevers, joint pain, muscle pain, swollen glands….) are still there, but are less frequent and/or less severe than they once were.

What does the future hold?

I will soon be going onto a maintenance protocol with my Lyme treatment, which involves lower doses of antibiotics, taken less often (i.e. the “off” periods of the antibiotic treatment get longer and the “on” periods get shorter). I am very much looking forward to this!

I have been doing some pretty extensive research recently into herbal treatments for Lyme disease, as I would like to support my healing longer-term with the use of herbs. I have been reading Stephen Buhner’s Lyme and co-infection books and I have learned so much, they really are fantastic books. I am developing my own herbal treatment protocol and plan to add this in, with the agreement of my Lyme specialist, when I move onto maintenance. The thing that I like most about Buhner’s approach is that it is less focused on killing the infection(s), and more on supporting the body (reducing inflammation and the cytokine cascade, strengthening the immune system, and repairing damage to organs and systems). Also, they’re from plants, which is awesome. I am attending a local “Make your own herbal medicine” course in a couple of weeks which I am VERY excited about.

There is no question in my mind that I will keep using the tools in the Gupta programme to support my continuing recovery, and I really can’t imagine a life without daily meditation and mindfulness.

As I move towards reduced doses of antibiotics, I plan to get my gut microbiome tested. There is a fantastic company that will test your microbiome via a sample (read: poo), to learn what species of bacteria/yeast are under- or over-populated in the gut. They then provide dietary recommendations to optimise your microbiome. Gut health has huge implications for chronic illness (good books on this – The Paleo Approach by Sarah Ballantyne; Gut by Giulia Enders) and I hope that this will help my journey to recovery.

Mostly, though, my future is about continuing to heal and recover by whatever means necessary. I always assumed that health meant being symptom free, and this was initially my goal for treatment. But now, as I am learning more about health and healing, I want to be so much more than symptom-free. I want to be truly healthy inside and out. I want to thrive. And I honestly believe in my heart that I will get to that place, when the time is right.

Thanks so much for reading my blog and listening to my story.

Katie x