Wellness Wednesdays, and making time for me

You should sit in meditation for twenty minutes every day. Unless you are too busy; then you should sit for an hour.

Zen proverb

A friend shared this proverb with me a long time ago, and I often think of it when I am struggling with my own meditation practice, dietary habits, and all the other things that I try and prioritise because I believe they make a difference to my wellbeing.

There is no denying that we live in an incredibly fast-paced world. The level of expectation on all of us to achieve and to ‘do’, is crazy, and finding the space to slow down and take time out for ourselves is becoming increasingly difficult. However, I do also think that it is our own responsibility to choose what we prioritise. The phrase “I don’t have time for that” is one of my biggest bug-bears, even though I catch myself saying it often, if not out loud then at least in my head. Because what we really mean when we say “I don’t have time for that”, is “that’s not a priority for me”. How can I tell myself I don’t have the time for meditation today while watching dog videos on facebook or googling some shit that I really have no need to google? And when I write it on my blog it sounds totally ridiculous and stupid, but it is a genuine struggle to make time for the things that really matter when technology provides us with constant distractions.

There are lots of things I try to prioritise in order to help my health. This includes eating a paleo diet, which means cooking pretty much everything from scratch and very few shortcut meals like pizza or sandwiches or pasta. It includes regular meditation which I know has a positive effect on my stress levels and therefore on my health. I have found that the key to a successful regular meditation practice is setting aside the same time every day in which to do it. But this brings its own challenges, especially since the only time I reliably have free every day is first thing in the morning. And getting up half an hour earlier is all well and good when I’m feeling well, but when I am sick and literally feel like I have the flu, it’s not so easy. Stress is a huge trigger for my health and so I try really hard to not overdo it, to keep at least a couple of evenings every week free in my diary for rest and recuperation, and to allow myself plenty of downtime. But this becomes increasingly difficult the better I feel. If I’m having a good day or a good week then I want to do absolutely everything right now – I want to embrace the good and make the most of it, because I know there is a good chance tomorrow won’t be so good.

I am grateful that chronic illness has shown me the importance of looking after myself. I am grateful that I know how to take care of myself and that I have the resources to do so. But, I am still human after all. I still have a job, a house to look after, a relationship to nurture, friendships to cherish, rabbits to take care of… as well as all the stresses of chronic illness.

So this week I have introduced ‘Wellness Wednesdays’ into my life! This is one day of the week where I promise to myself – no social media, no excessive scrolling through google, no rushing around like a headless chicken. Today I have meditated, I have eaten well, I have rested, and I have chosen to prioritise the things that nourish me. That’s not to say I won’t try to do all of those things again tomorrow. I try to do them every day, but I also accept that it is not always easy. Wellness Wednesdays is an opportunity for me to remind myself of what really matters. To prioritise me. I would love to have some company in my quest for Wellness Wednesdays, so if you fancy joining in, message me! 

Living a natural lifestyle

The last couple of years, I’ve become more and more interested in learning about the chemicals in our environment and the effect they have on us. I remember the exact moment my interest began. I was catching up with a friend I’d not seen for some time (I really hope she’s reading this, she’ll know who she is!). One of the first things I said when I saw her was “wow, your hair looks great!” She replied “oh thanks, I’ve been doing no-poo!”. No-poo, she told me, does not involve chronic constipation, but is in fact short for ‘no shampoo’. And so began a long conversation about the no-poo craze, and my interest was sparked.

Shortly after that, I tried no-poo myself for a while. Just to clarify, it doesn’t require you to never wash your hair, but just to use things other than commerical bottles of shampoo and conditioner to wash your hair. It’s actually pretty incredible the things you can use – bicarbonate of soda, soapnuts, lemon juice, rye flour, and even raw egg! I have to confess that at this point in my experiments, as I had raw egg running off my hair and into the base of the shower, things started to feel pretty surreal, and it dawned on me – I was a hippy! I was that person I would previously have listened to with curiosity, nodding and smiling while secretly thinking to myself, why on earth doesn’t she just use shampoo?! But being on the other side of hippyness is suprisingly liberating and honestly, I’m proud of being a bit alternative!

As it happened, I didn’t get on that well with no-poo. I found it a lot of effort and was never quite happy with how my hair turned out. I now use so-called ‘low-poo’, which is a term often used to describe commercially-produced shampoo that contains no harsh ingredients. For anyone who’s interested, my favourite one by far is this one by Avalon Organics: http://www.avalonorganics.com/en/products/hair-care/shampoo/scalp-treatment-tea-tree-shampoo/

Through my experiments with no-poo, I started learning more and more about the various ingredients found in common products, including shampoo, shower gel, hand soap, washing powder, washing-up liquid, deodorant, makeup, perfume, and pretty much everything else that 21st century women (and men, but to a lesser extent I think) are assumed and almost expected to use. The more I learned, the less appealing my cabinet full of products became, and slowly I started to investigate more ‘natural’ alternatives. (I use quote marks for the ‘natural’ because I think we have become a bit obsessed with marketing buzzwords like natural, organic and chemical-free, when most of these things are still factory-produced and in reality, even so-called ‘natural’ ingredients are still chemicals, like bicarbonate of soda for example).

Regardless of the terminology we use, though, there is no denying the fact that hundreds of ingredients used in every-day products have proven negative effects on our bodies. If you’re interested in finding out more about the products you use, this website is a fantastic resource: http://www.ewg.org/skindeep/ It has products listed by brand, provides the individual ingredients in those products, what the research says about potential harmful effects of the ingredients, and then an overall traffic light system to show the perceived safety of the product. If you have a spare 5 minutes it’s well worth a look. I was gobsmacked the first time I checked it out.

As a person with chronic illness, it is hard not to care about this. We work so hard to achieve wellness: using medications, supplements, eating the right diet, researching our conditions… why would we want to risk ruining all our hard work so needlessly by using all these things? I don’t think this is unique to those with chronic illness though, and lots of my friends are becoming increasingly concerned about these same issues, and with that, people are showing an interest in the sorts of alternatives I use.

So I thought my blog is the perfect platform to share my thoughts and experiments with natural products. If one person, somewhere, has their interest sparked in the same way I did by my first ‘no-poo’ conversation, then I’ll be pretty damned chuffed. In particular, over the next few weeks I’ll start sharing some of my recipes for homemade products (starting with  deodorant, my absolute favourite homemade product!), and discussing the pros and cons of various shop-bought alternatives. If you have any of your own recipes you’d like to share, I’d love to hear from you!

The worst diagnosis of all

A couple of years ago I bought a book called ‘Why can’t I get better’, by Richard Horowitz, and it was all about Lyme Disease. I remember reading it at the time and thinking wow, so much of this sounds familiar. I did some research and quickly discovered that Lyme disease, in its chronic form, is extremely controversial. The NHS in the UK (and the CDC in the US) do not accept that Lyme disease exists as a chronic condition, and the vast majority of doctors work to this effect. In addition, the test that is used in the NHS and in many healthcare services worldwide has notoriously bad sensitivity, meaning it produces a lot of false negatives. There are calls, by researchers and clinicians worldwide, for a new approach to Lyme disease [1 – this is an academic paper, but is only 1 page long and very readable, so I highly encourage everyone to read it!*(see footnote)].

At the time when I read this book, I quickly dismissed the possibility of Lyme disease based entirely on this controversy. Partly I think it was because I thought to myself (naively, I now recognise) that if the NHS doesn’t treat it, it can’t be a real thing. It must be a conspiracy theory and I don’t want to waste my money or time looking into that. And partly I think it was that I just didn’t want the hassle of thinking about something so complex, so put it to the back of my mind.

Fast forward to last month. I had a severe throat infection and after a visit to my GP was prescribed a 10 day course of antibiotics. A few days into the antibiotics, not only had my throat infection cleared, but I felt on top of the world! All of my EBV symptoms completely disappeared. For the first time in years the glands in my neck went down to a normal size. I had so much energy, no sore throat, no headache, no achey joints or muscles, no fever….it was incredible. There’s a funny thing that happens when you are chronically sick. Your level of ‘normal’ changes. You somehow get used to feeling shit all the time. Sometimes you feel a bit shit, sometimes you feel really shit. But always shit. You forget what it’s like to not feel shit and adjust to going about your daily routine feeling this way. Sometimes you even start to question whether you do in fact feel shit – is this just how people feel? Am I just a hypochondriac, or overly sensitive? Chronic illness really messes with your head. So this period of wellness when I was taking the antibiotics last month was like a light had been switched on. “Oh yes, THIS is how it feels to be well!”

Alas, my excitement was short-lived. A few days after the course of antibiotics ended, I came crashing back down to chronic illness earth. All of my EBV symptoms returned and I went back to feeling…. you guessed it, shit. And this was what drew my attention back to Lyme disease. Lyme is a bacterial infection, spread by ticks, and treated with antibiotics. I started doing some digging and once again found so much that made sense to me. Lyme disease suppresses your immune system and can lead to chronic reactivation of viruses like EBV. It can suppress your pituitary gland, the ‘master gland’ that is directly and indirecly responsible for the production of many hormones in the body, including sex hormones. Those who know me or follow my blog will know that my oestrogen and progesterone levels fall within the range for a post-menopausal woman, way below that expected for a 28 year old. Lyme is also said to flare in cycles and many women experience particularly bad symptoms at particular times of their menstrual cycle, which has always been the case for me.

So with all this in mind I decided to get tested. Like many people with chronic illness, I do not have a good relationship with my GP. In fact I don’t even see my NHS GP for anything chronic illness related anymore. Instead I found a private accredited lab that uses a different type of test that has much greater sensitivity and specificity. Yesterday I had the results of those tests back, and it was positive. I have Lyme disease. The one diagnosis I hoped I would never receive. Being caught up in a controversial illness that is so poorly accepted by the UK health service, is not what I ever wanted for myself. For those of us with Lyme (that was a weird thing to write – I am now ‘one of those’), we are pretty much on our own. My next step is to find a doctor, hopefully in the UK but potentially abroad, who recognises Lyme disease in its chronic form and will help support me. The good news in all of this, is that I finally have an underlying explanation for all the problems I have experiened. Chronic EBV never felt like the whole picture. In one of my early blog posts (Relationships, love and infertility) I talked about what sod’s law it was that EBV seems to reactivate when my oestrogen is low, AND that I have chronically low oestrogen. Well, Lyme is an explanation for both of these things.

Nonetheless, there are many emotions associated with this diagnosis. Fear of what lies ahead. Disappointment that I’ve spent so long being ill, fighting the wrong battles and climbing the wrong mountains. Anxiety over the new label attached to my name. Guilt for my loved ones that they too have a new label to consider. But above all, there is huge comfort in the knowledge and understanding I now have, and hope for my future.

 

Reference

[1] Borgermans, L., Perronne, C., Balicer, R., Polasek, O. (2015). Lyme disease: time for a new approach? The British Medical Journal, 351. Available here: http://www.bmj.com/content/351/bmj.h6520

*I have since discovered this paper is sadly not open access so is only available to those who work in academia or related fields – if you would like to read it please let me know and I can send you a copy

Other resources