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

When recovery is a spiritual journey

Up until a year or so ago, I would never have considered myself a spiritual person. In fact, if I’m honest, I probably looked down on people who were religious or spiritual. I was a woman of science, and I had no time for anything remotely woo-woo. Despite my love of yoga and my increasing interest in alternative approaches to health, any mention of chakras or energy fields or “connection to a higher power”, quite frankly, had me eye rolling.

But when you have been ill for so long and nothing has helped, you will pretty much try anything. And while I still have one foot in the door of modern medicine, I am realising that alternative and conventional approaches don’t need to be an either/or situation. They can be used side-by-side to serve different functions and ultimately, work together to achieve healing.

Healing.

Another word I would have turned my nose up only a year or two ago. What does healing even mean? Isn’t it just a non-descript word that charlatans use to trick people into giving them money? The old me would have thought so, but now I am beginning to understand. I can take all manner of medicine to kill the infections in my body, but even modern science accepts that infection is more than just a function of the bacteria or virus. Because two people can contract the same infection and react differently. There are so many factors that can influence the body’s response to infection. So maybe, just maybe, killing the infection is only part of the story. And for years I had been looking at nutrition and supplements and exercise and hormone balance, and all of those things that add complexity to the story of infection, but are still safely grounded in the world of science that I was so familiar with. And yet there was a gaping hole in the puzzle. The one thing that I had neglected to pay attention to, for all those years: myself. My personality, my habits, my beliefs. Me.

And so began my spiritual journey (sorry, the word “journey” still makes me cringe). I realised that I had spent my whole adult life stressed, wired, and anxious. I was such a perfectionist that any mistake, no matter how small, was an intolerable hit to my self-esteem. I had no self-love, no self-compassion, and I, like so many people, felt wholly inadequate most of the time. I felt judged by the world, and I judged the world right back. And that whole package of personality, all of those traits that I thought were the only way to live and if anything, were something to be proud of because they made me strong and successful, were in fact part of the reason I couldn’t get better.

And so began my quest to no longer seek all the answers from the external world – infection, diet, exercise, sleep – and instead, I turned my attention within. And with that came the most overwhelming sense of ownership and hope, because now I am no longer dependent on finding the answer out there in the big wide world, of needing to research and learn and obsess about what I might be missing. Instead, I can relax and let go and enjoy life, safe in the knowledge that the final pieces of the puzzle are already here. I just need to open my eyes.

And this realisation has changed my life so profoundly. I am no longer rushing every second of the day. I am no longer judging my self-worth by how hard I pushed today. I am learning to love myself for who I am, not for what I have achieved. I am learning to be a human being, not a human doing. I am learning that the world is ultimately a good, safe place and that everything will be just fine.

And while there have been, and continue to be, some very dark days along the way, I am so grateful for everything I have learned from poor health. I am happier and more fulfilled by life now than I ever have been, and I can’t help but wonder whether I would still be painfully judgemental and convinced of my inadequacy, were it not for those difficult experiences.

I have no doubt that I can and will get better, and that I can live the life I choose for myself. It may take some time, and that is just fine, because I believe that I will not completely recover until I have learned all the lessons that I was supposed to learn from this experience. But I am in no hurry, because I know that I am healing.

 

Afraid no more: A poem

I am a totally concrete, non-abstract, logical thinker. I have no imagination whatsoever. So it came as a big surprise this morning when I had a really strong visualisation of me no longer running from Lyme disease, but instead, confronting it, calmly and peacefully, right in the face. It happened while I was doing one of my favourite chronic-illness/pain meditations where you meditate on the symptoms, deliberately focusing on them without judgement, without labelling them as good or bad and allowing them to “be” rather than trying to push them away. I get so much benefit from it and have been using it a lot this week, which has been one of the worst weeks I’ve had for as long as I can remember.

It came as an even bigger surprise when, after my meditation, I had an urge to write a poem. I haven’t written a poem since school so I really have no idea where it came from but since I’ve been in bed all week, it’s not like I had anything else to do!

So here it is: my first grown-up poem!

Afraid no more

You open your mouth, wide as a cavern
And with all your might, you let out a roar
My soul fills with dread, my heart full of fear
For you, my stalker, my power-hungry tease
You lurk in the shadows while you let me prevail
Waiting to pounce, control forever yours.
Now you roar, you roar, you roar with such fury
Two choices I face, do I cower or run?

My heart starts to race, my fingertips tremble,
So desperate to be free from your embrace.
I turn and I bolt, praying I can outrun you
But as always you are stronger, right at my heels
I am so afraid, but I hopelessly run
And I hear you laugh at my feeble endeavour
My legs are tired and I start to slow
Walking, feet dragging, exhausted and weak.

I come to a stop and I close my eyes
Inhaling deep, my inner-strength reignites
I turn around and look straight at you
A flicker of hesitation as you question my will
My mind is calm and I trust my decision
I walk towards you as my heart starts to settle
Face-to-face now, your breath strokes my skin
No longer afraid, I feel your presence
I exist within you, and you within me,
In every cell, every vein, every breath that I take.

The faster I run, the harder you chase
So what do you do now that we are face-to-face?
I invite you in, and you relinquish your power
Know this, old friend: your days here are numbered
I am no longer the frightened girl that you crave
I am looking within, where answers reside.
The once crashing waves lap gently at the shore
I am no longer running, for I am afraid no more.

 

 

 

 

Detaching from the identity of chronic illness

Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin.

I attended a yoga workshop today, where the underlying theme was opening the heart and letting go of that which no longer serves you. It ticked all the right boxes of where I am in my life at the moment, and I left feeling lighter, calmer and at peace with the world. In case you didn’t know: I love yoga.

As I was lying there in meditation, we were invited to let go of the things in our life that we no longer need to hold on to, and I realised that for me, that thing is illness. For those of you reading this post who also experience chronic illness, I suspect this will make a lot of sense, but for those of you who are generally fit and healthy, it may sound pretty bizarre. But chronic illness is so much more than just being chronically ill.  When you experience the same pattern of symptoms repeatedly over many months, years, or even decades, those symptoms become the very essence of your existence. Long-term illness creeps its way into every single aspect of your life: work, home, relationships, hobbies, diet, bedtime routine, the list goes on and on. Every decision you make, and I mean every decision, has chronic illness behind it. It’s like a constant parrot on your shoulder that you can never get rid of. Chronic illness becomes a part of your identity. Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin. And not only that, but all of the thoughts, beliefs and emotions that come along with those symptoms, become part of your identity too.

Up until very recently, these were some of the thoughts I experienced on an almost daily basis:

  • Oh no, these symptoms again, I can’t cope with this
  • How much longer is this going to go on for?
  • Will I ever get better?
  • I’m going to have to cancel my plans again, what if “insert friend’s name here” gets pissed off?
  • YAY, I feel good today. Oh wait, how long is it going to last?
  • Maybe if I just meditated more/took this supplement/lived off of ice cubes, I might get better

Etc, etc, etc.

In addition to my US treatment for Lyme disease, I recently added a “brain retraining” programme for CFS/ME into my recovery. Sounds a bit nuts, and I don’t want to go into details of this just yet, as it’s early days and I’m still working out what I think about it all. But without question, it is helping. The focus of this programme is to calm the nervous system, in two main ways: 1) directly through meditation, deep breathing and stress management, and 2) by reducing attention (read: obsession) on symptoms, illness, and all the kinds of thoughts listed above. Amongst other things, it involves redirecting focus away from negative thoughts, beliefs and images, to more positive, empowering ones.

For the first couple of weeks, it was hard-going. The negative thoughts were pretty much constant. Any time I stood up, sat down, got in the car, noticed a symptom, noticed a lack of symptom…basically any time I so much as took a breath, a thought or image related to chronic illness would crop up. It was really quite eye-opening to start paying attention to these thoughts, not running from them or trying to push them away, but just noticing they were there, accepting their presence, and then calmly redirecting my attention. It made me realise just how much illness has become ingrained in my entire existence; my self-identity. And the trouble with this, is that it is a self-perpetuating cycle. How can you get better when you are constantly telling yourself, without even realising, that you and this illness are one?

But after those difficult first couple of weeks, changes started to happen. The thoughts were cropping up a little less, and my brain was automatically picking the positive images over the negative ones. Don’t get me wrong, the thoughts are still there. They’ve been there for about ten years so I guess they’re not going to go away overnight. But when I wake up in the morning, my first thought is no longer “am I feeling sick today?”. When I make plans for next week, I’m no longer assuming that there’s a good chance I won’t be well enough. Of course, I know that realistically, there is still a good chance I won’t be well enough, but I am no longer stressing, obsessing and expecting the worst. I imagine health. I picture energy. I believe, deep down in my soul, that I am on the road to recovery. And that may happen next month, it may happen in a year – it doesn’t really matter. I am no longer attached to a timeline, a “deadline” of how much longer I can cope with this for.

For the first time in my entire life I have stopped the frantic search for an answer from the outside world, and instead, I am looking within. And slowly, but surely, I am detaching from my identity as a sick person.