The power of the human body

Time and time again I tell myself “I don’t think I can do that”, and my body proves me wrong.

Those who know me know that yoga is a huge part of my life. It is more than just a hobby, it is a way of life. I highly recommend yoga for anyone with (or without!) chronic illness, because yoga really is accessible to everyone. I will admit that my absolute favourite parts of yoga are the headstands, the handstands and all other things that really challenge me physically. But here’s the thing: yoga isn’t really about the headstands, handstands or any other fancy poses. Yoga means ‘to yoke’; to unite; to join; to connect. It is a process of becoming more aware of who we really are. The poses we typically associate with ‘yoga’ in the West are one way of working towards this, but anything that helps us connect with ourselves is yoga. Therefore, anyone can practice yoga. It doesn’t require physical fitness, it assumes no religious underpinning, and it doesn’t mean you have to pay £8 to attend a class. Sit for 5 minutes focusing on the sensations in your body – yoga. Use techniques to regulate your breath when you feel stressed – yoga. Practice self-compassion, being honest with yourself about what is right for you – yoga. In fact, everything we do could be yoga if we practiced it with full awareness.

For the last couple of years I have dabbled in acroyoga, which combines yoga with acrobatics, working with and supporting other people in pairs or groups. There are a million reasons why I love acroyoga: it appeals to my love of a physical challenge, it pushes me outside my comfort zone, it builds trust and communication, and above all, it is seriously good fun! Around 6 months ago I had a bad patch health-wise, my mental health and motivation suffered, and I stopped practicing acroyoga. Before I knew it, I was out of practice and convinced I wouldn’t be able to do it anymore, and acroyoga was no longer a part of my life.

Just before Christmas, I was having a good week and I bit the bullet and went to my local acroyoga class. I was nervous about going. I really didn’t know what I would be able to manage physically, I had been out of action for so long and I was convinced that I would no longer be able to do the things I used to be able to do, that everyone else would be better than me and that I would have a miserable time (self-pity anyone?!).

Well, how wrong I was! I managed all the poses I could do before, including the one in the picture, which I had actually really struggled to get the hang of when I was practicing regularly, and which I’d only ever successfully done twice before (thanks to my fellow acroyogi for letting me use this picture!). But more than that, I had fun. I instantly reconnected with the wonderful community of acroyogis and I forgot about all my problems. It was the happiest I had felt for a long time.

I honestly cannot believe what my body allowed me to achieve that night, but when I think about it, I really don’t need to be upside down hanging off someone’s legs to realise how powerful my body is. I have been chronically sick for years and yet every day my heart continues to beat, my lungs continue to breath, and my body allows me to live a relatively normal life. Day after day I feel my body struggling just to make it to the end of the day, and yet, after 6 months of inactivity I was still able to do challenging poses and even learn some new poses. I have absolutely no idea how my body does it, but it does. Time and time again I tell myself “I don’t think I can do that”, and my body proves me wrong.

I know that I am fortunate. I know that for many with chronic illness, a good day means making it to the shower. I am lucky that my body allows me to achieve things that for many would feel impossible. But the message is still the same. Chronic illness can feel like a daily battle: me vs body. It can feel like my body is punishing me, fighting me, willing me to give in and just be sick. And then I have moments like that evening at acroyoga, and I am reminded that my body is not fighting me at all. My body is willing me to be well, not sick. Even in my sickest times, my body continues to chug along in the background, waiting patiently for me to be well again. My body is not my enemy, it is my friend.

Should we accept chronic illness?

I’ve always tried to approach chronic illness with positivity. I’ve never really seen the point of moaning, it’s not like it changes anything. At best you wind up feeling irritated and stressed, and at worst you make everyone else around you feel miserable too. Recently I’ve been thinking a lot about positivity and how it relates to acceptance, of chronic illness or of any other difficult situation.

The last few years I’ve increasingly moved towards an attitude of accepting my illness and the limits it places on me. I think my yoga practice has contributed towards this; we are always encouraged in yoga to show self-compassion, to recognise the limits of our body, never comparing ourselves to the person on the mat next to us but instead being happy with where we are on our own journey. I’ve spoken to many people with chronic illness who say that an attitude of acceptance has been crucial to maintaining quality of life, and until recently I think I could say the same for myself.

I read a book a couple of years ago called “How to be sick: A buddhist-inspired guide for the chronically sick and their caregivers”, by Toni Bernhard. It was one of the most positive and uplifting takes on chronic illness I’d ever come across, and had a profound effect on how I looked at my own situation. It helped solidify my desire to live a positive life, free from mumbling and grumbling, focusing on what I could achieve instead of what I couldn’t, and accepting my life exactly as it was, without needing the circumstances to change.

In some respects, I still think that this attitude has many benefits. If our contentment is reliant on the external world, we will never be happy. There is always something to be unhappy about. Sure, some people have it worse than others, and throughout the course of all of our lives we will have times when we have more or less to moan about. But things will never be perfect. Everyone has something in their life that is difficult, and as soon as one problem passes, we find something else to worry about. Taking a positive approach and focusing on what we can achieve in spite of those problems, allows our mental state to be greater than the sum of our external problems.

Recently, however, I’ve started to question whether acceptance can go too far, morphing from a positive zest for life into losing all expectations of ever getting well. And once you lose the expectations of getting well, hopelessness and despair are following not far behind. I’ve just finished a book called “You are the placebo: Making your mind matter” by Joe Dispenza (blog post on that coming up). It’s all about being your own placebo effect through the power of your mind. I know, it sounds like absolute hocus pocus, but the science behind it is fascinating and I’m totally hooked on the idea. Alongside that, I’ve recently had a few sessions with a friend who uses hypnotherapy and psychoneuroimmunology (PNI) with people with chronic illness.

PNI focuses on how the nervous system and immune system interact, thus creating links between mind and health. It utilises simple techniques like meditation, positive mental imagery and hypnosis to focus the brain on ‘wellness’. You remember what it was like when you were well, you picture what it will be like to be well again, and then imagine you already ARE well. PNI has been shown to be effective for a whole host of illnesses from psychosis to hypothyroidism, but it is particularly successful in infectious diseases, which is of huge interest to me given my Lyme disease diagnosis.

And this got me wondering. In order to use the principles of PNI, to convince my brain that I can and will get well, does this not require me to no longer accept my illness? I recently read this fab post from fellow blogger One Mountain at a Time: Why I won’t accept my illness, but I’ll accept the battle. She explains that the dictionary definition of acceptance is “to receive willingly” and “to endure without protest or reaction”, and therefore makes the case that she will not accept her illness, because that would mean no longer fighting it. This really struck a cord with me. For all these years I have been trying to accept my illness because I thought it was the best way to cope. But now, I am not so sure.

Since finding out that I have Lyme disease, I have been filled with a huge fire in my belly. I have a new drive to improve my quality of life, to get well. I do not accept that I will always be a sick person. I do not accept that this is the life I am destined to live. I am absolutely determined that one day I will look back on today and say “wow, remember how sick I was back then?”

But can we both accept the limitations of where we are today, while still being determined to make change for tomorrow? Or is it time to let go of acceptance?

The advantage of disadvantage

I recently watched a video of Michelle Obama giving a speech to students at the City College of New York (link here: http://qz.com/700823/michelle-obama-told-graduates-of-the-poor-mans-harvard-that-living-without-privilege-is-an-advantage/ )

The general message was this: facing adversity is an advantage, not a disadvantage. It reminded me of a book I once read called David & Goliath, by Malcolm Gladwell (well worth a read FYI!). It is a series of stories of what Gladwell calls “ordinary people confronting giants”; people facing all kinds of adversity and disadvantage. I think his message goes a little bit further than Michelle’s. I wholeheartedly agree with her argument that facing adversity makes you stronger, allows you to handle setbacks and makes you better equipped to deal with challenges in the future, giving you an ‘edge’ over those who haven’t faced such adversity.

But in David & Goliath, Malcolm Gladwell’s argument is that being the underdog in any given situation fundamentally changes you. It opens doors, creates opportunities, educates, and allows you to achieve things that others might deem unthinkable. The advantages of disadvantage, he says, go well beyond just making you more resilient.

I read this book about a year ago when I was at a real low-point with my health, and the message behind it really impacted me. It allowed me to reframe my sickness and see the situation in a totally different way.

Now let’s get this straight: I’m not trying to polish a turd, chronic illness sucks. Actually, all illness sucks. Anyone who’s ever had a cold, a sore throat, a tummy bug, an injury, surgery, depression, pain – in that moment when you are suffering, it’s hard to think about anything else, it consumes you. I think, therefore, that even those who’ve never experienced chronic illness can still picture what it might be like. Imagine that cold/tummy bug/injury coming back over and over and over again, a permanent parrot on your shoulder, a constant threat of illness and pain that could strike at any moment without warning. If I could choose to go back and live the last 12 years of my life without chronic illness, I would absolutely be there in a heartbeat.

But, reframing my illness to focus not on how bad it is or how unfair it is, and instead thinking about the advantages it has brought me, has been massively helpful in my ability to deal with it and stay emotionally healthy. And I don’t just mean superficially telling myself what a wonderful thing it is to be sick, that would be stupid. I mean really thinking about all the positive things that have happened as a result. And the truth is, there really are a lot of positives. I would not be the person I am today if it wasn’t for chronic illness. I mean, I would literally be a different person. It has totally shaped my entire adult life, both who I am and the things I have achieved. And honestly, I quite like who I am, and I quite like my life too.

These are just a few of the examples of positive things that have come from my illness:

  • It has made me extensively research the effect of nutrition on health and illness, and has therefore led me to a way of life that is infinitely healthier than the one I was leading a few years ago. Chronic illness or not, taking good care of our bodies has to be a good thing, right?
  • It has made maintaining friendships quite difficult at times, which therefore means that the friends I have now are all people who are patient and understanding, who don’t pressure me into doing things I can’t do and who try their best to support me in various different ways.
  • Ok, this one might seem a little ridiculous. But I am bloody good at crochet! I started learning to crochet last year when I was unwell a lot and I could no longer do many of the things I used to enjoy (running and playing music were the two biggies). So to fill my time I taught myself to crochet using youtube tutorials. Well, not to blow my own trumpet but I’m pretty darn good at it now so, two fingers to you EBV.

These are just a few examples. There really are many, many more. So, to anyone reading this, I encourage you to reframe your difficulties. Of course, adversity sucks, it’s human nature to want to avoid unpleasant situations and feelings. But no matter what the situation, I promise you that somewhere in there there is a positive to be had, and thinking about the situation from a different perspective may just make it all feel a little less overwhelming.

 

The emotions of chronic illness

It seems strange that in deciding what my first blog post should be, I have focused on the emotions rather than the physical symptoms. I am a bit of a keep-it-all-inside kind of person. Battling with this illness for 12 years, friends have come and gone, relationships have ended, that’s just the way of life. There is only really one person who has been there through it all, and that’s my mum. So I suppose you get used to dealing with it all yourself. What’s the point of talking to someone about how you feel when they can’t possibly understand what you’re going through, and when they might not be in your life anymore come next week, next month, next year?

When I’m sick, all my energy is taken up with the sickness, so that talking about how I’m feeling becomes even harder than normal. I’m sure there’s a primal, physical aspect to that – your body needs to preserve energy to fight the infection, right? Social chit-chat is definitely very low down on my list of priorities when I’m feeling sick, which must be pretty hard for my loved ones to deal with sometimes.

Chronic illness is a constant cycle of emotions. When I’m sick I’m filled with sadness, despair, hopelessness, disappointment. When I get better there’s happiness, excitement, hope, but there’s still anxiety, fear, worries about the future.

I am always seeking new information that may help me – new supplements, a new diet, a new medication, a new doctor. But sometimes that information can be overwhelming. I have read about so many different diets that might help EBV. No gluten, no dairy, paleo, vegetarian, autoimmune protocol, low sugar, low carb, and my most recent discovery – low arginine (blog post on that coming up). Then there’s the supplements: multi-vitamins, fish oil, monolaurin, cordiceps, colloidal silver, lysine….I could go on and on. In theory, all this information is great. But where the hell do you start when you are all on your own with a million different things that ‘might’ make you feel better? How long do you try something before concluding it hasn’t helped? Do you do one thing at a time or just bung them all in there and hope for the best? This is where my scientist-researcher brain probably makes life harder. How can it be a controlled experiment with so many factors at play?

So then comes the despair and hopelessness. How can I possibly get better if I have absolutely no idea what might actually help? In science you’re always taught to think about your sources. A peer-reviewed academic publication is a more reliable source than a random comment from one person online. But what do you do when 100s of people say that xyz has helped them with their illness? Is it worth taking the shot, even though your doctor would probably laugh in your face if they knew what you were trying?

And then I feel angry that I am spending so much time and energy researching these things when I could be enjoying life. At what point does information-seeking become obsession? When should you let go and accept the situation for what it is? It is a fine balance between not giving up the fight for good health, and not aimlessly searching for a cure that doesn’t exist.

But the worst emotion, the absolute worst, is loneliness. I am very lucky to have a wide support network of friends and family. But none of them have experienced chronic EBV. Almost all of my friends see me only when I am well, so they truly have no understanding of what my life is really like, and I can’t expect them to. Even my closest loved ones still don’t have to experience it first-hand. No-one else can share my physical experience, it is mine and mine alone, and that is a lonely old place to be. I think that is why I spend so much time researching online. There is a strange comfort in reading a story that mirrors your own, in realising you are not alone. At least I can be thankful of living in the age of the internet, where I can connect to other people who are sick too.

In fact, I have a lot to be thankful for. Love, support, a career, a roof over my head, and a body that, despite its flaws, still allows me to practice yoga sometimes, or feel the sand between my toes. I am not sick all the time. The unpredictability of how and when I’ll be sick is one of the things I find hardest, but at least it means I have days where I can function like a normal human being. In fact, at the moment, I have quite a lot of those days. I get to play with my nieces, practice my headstands, make love to my boyfriend (sorry mum). And chronic illness at least means that I will never take those simple pleasures for granted.