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.