My go-to homemade deodorant

I recently posted about my quest for a natural lifestyle, free from as many harsh ingredients as possible. I’ve always been very sensitive to commercial products. I have countless memories throughout my life of allergic reactions to various products. Like the time my eyes swelled almost completely shut after having makeup applied for a dance show when I was about 7. Or walking around London on a sweltering hot summer’s day aged 12 with the most unbearable itchy rash (the kind where it’s ALL you can think about) from a plaster I had worn the day before. To the beginning of this year, aged 27, when my face and neck broke out in a hives-like rash from using a particular brand of washing powder.

I find it kind of weird how, in our 21st century lives, these sorts of immune reactions have become something fairly unimportant, benign even. How many people just take an antihistamine or buy some cream when they get a skin reaction, hoping it’ll go away and not really worrying about what’s causing it? I know I was certainly guilty of that in the past. Use product – get rash – use another product to hide rash – repeat. But as I get older, and as I care more and more about truly looking after my body, these sorts of things really bother me. A rash is one way my body can tell me it’s not very happy with what I’m doing, and since I’m never going to get another body, it probably makes sense to pay attention to it.

There is a principle in yoga called Ahimsa, which roughly translated means “not to injure”. It is a core principle of yoga philosophy: non-violence, to any living beings. I remember my yoga teacher saying that Ahimsa begins within. First, do no harm to yourself. I feel like this is a principle that we have lost sight of in our fast-paced, hectic Western lives. We do whatever is cheapest, quickest and most convenient, rather than what is best for us. Fast food, 30 minutes on the treadmill, big brands at the supermarket, and pre-packaged toiletries full of nasties.

But the truth is, natural alternatives really don’t have to break the bank or take hours to prepare. And what’s more – they actually work! One of the first things I made when I started making my own products was deodorant. It is probably one of the quickest and most effective homemade products I’ve tried, so I thought it’d be a good one to share.

Off-the-shelf deodorant or antipersperant typically contains a whole host of ingredients with potentially damaging effects on the human body. As an example, the SkinDeep website shows that a Sure anti-persperant contains ingredients that studies have shown are associated with cancer, skin irritation, lung irritation, harm to unborn babies, hormone disruption, and many other things. My homemade deodorant contains 3 ingredients, all of which score a 1 (the lowest risk rating) on SkinDeep, and which, as far as I’m aware, have no evidence of any harmful effects at all.

Deodorant feels like quite a risky recipe to be the first to share on my blog. It’s pretty full-on hippy isn’t it, making your own deodorant? Plus, it’s not necessarily the kind of thing you want to experiment with. You have a bodged bottle of body wash or moisturiser and it’s really not the end of the world, but let’s face it, no-one wants to walk around smelling of BO.

I hear you. I was so sceptical that homemade deodorant could possibly do anything for my pits, that for the first two weeks of using it I carried my old deodorant around in my handbag, just in case I suddenly started smelling. But I have been using it for over a year now and can honestly say it is more effective than any shop-bought deodorant I’ve ever used, including the old brand I used to swear by that claims to prevent odours for up to 48 hours.

So here it is, my homemade deodorant!

Ingredients

  • 2 1/2 tablespoons coconut oil
  • 2 tablespoons bicarbonate of soda
  • 2 tablespoons cornflour or arrowroot powder
  • Optional: 5-10 drops of essential oils (*see below for my favourites).

Method

    • Put the coconut oil in a small bowl and mash it up with the back of a spoon. Don’t melt in the microwave because it’ll reduce the effectiveness of the deodorant (I have no idea why this would be, but just trust me on this one…!)
    • Add the bicarbonate of soda and cornflour/arrowroot, and mix until you have a thick paste.
    • If desired, add a few drops of essential oils. My favourites are tea tree and peppermint oil because they have a fresh, clean scent, as well as having antibacterial & antifungal properties . I also often use citronella, which is a natural deodoriser.

Put the paste into a jar or container of some description. When you want to use, take a pea-sized blob and rub it into each underarm.

Voila! No stinky pits. If you try this out, let me know how you get on!

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

The mind/body dichotomy

I have a long-standing interest in the relationship between the mind and the body. A lot of my life history has drawn me towards it: my psychology degree taught me all about the theory of the mind, chronic illness has taught me how the mind can negatively affect the body (I often experience flares when I am stressed or sleep-deprived, for example), and my yoga practice has shown me the amazing things we can achieve when the mind and body work together in harmony.

But the thing is, the very concept of mind/body bothers me, and the more I think about it, the more confused I get. Where does the mind stop and the body begin? How can we possibly separate them out into two entities that can be described and studied without consideration to the other? Is there even any value in having these two distinct words; what do we gain by treating them separately?

I have recently been studying some of the medical literature about the relationship between physical symptoms and mental ill health, and what stands out for me is that even the experts on this topic, in the Western world at least, treat them as two separate ‘things’. Take for example, this study on the use of psychological interventions for people with emotional disorders and chronic illness. The very first line of the paper says: “Emotional disorder associated with physical illness falls into two main groups: psychological reaction to physical illness and somatic presentation of psychological disorder.” So either a) you have a physical illness and it makes you depressed/anxious etc, OR b) you have a mental illness that just happens to express itself as physical symptoms like tummy aches. But how valid is this distinction, and how useful is it to think about these relationships in such a linear fashion (i.e. A causes B)?

Could we not say, instead, that health is just health, and we all fall on a health continuum ranging from very poor to very good? Anyone who’s ever had depression will know that it can make you feel absolutely terrible physically – you might feel exhausted even though you get 10 hours of sleep every night, you might have constant headaches or migraines, or you might be picking up every bug going around. And anyone who’s ever had a chronic illness will most likely have felt pretty shit mentally at times, because feeling lousy for extended periods of time really does start to drag you down after a while, no matter how good your coping mechanisms. In fact, even an acute illness like the flu can really mess with your head, because as much as the idea of lying in bed all day sounds delightful when you don’t get to do it very often, once you’re forced into it you quickly start to feel like you’re in prison.

I’ve had times in my life where mental illness was my primary health concern and my only diagnosis, and I’ve had other times where my physical health was in a very poor state but my mental health was, all things considered, pretty good. But how much did those diagnoses of ‘mental health problem’ and ‘physical health problem’ really help me? In fact, I think these categories can actually be quite damaging, both for the individual and for our progress in understanding disease. Because the very presence of this mind/body dichotomy means that when a doctor suggests a psychological treatment, it immediately sends a message to the patient that this problem is all in their head. And I know both from personal experience and from the experiences of others with chronic illness, that this can make you feel disbelieved; that you have to somehow defend the physical nature of your illness.

But this attitude means that people who could be benefitting from psychological support are not getting it, because to accept psychological help means you are admitting defeat – if this is in my head, then it cannot be physical. Likewise, I think that having a diagnosis of a mental illness can make medical professionals very quick to discount anything other than that mental illness as a cause of problematic symptoms, adding to the cycle of feeling disbelieved and unsupported.

I dream of a world where this mind/body distinction is a thing of the past. Where we all recognise that the mind and body are intertwined, so much so that we talk about them as one entity without even realising that’s what we’re doing. Where there is no shame in accepting that the way feel in our heads might be affecting the way we feel physically, or vice versa. Scientists don’t know it all, and just because something is widely accepted by very clever people, it doesn’t mean that it is the most helpful way to think about things, or even that it is true. Didn’t the brightest minds in the world once believe that the earth was flat?

 

The art of self-acceptance

When you are living in hope of a different life, you are wasting the one you already have.

The last couple of months have been quite bad for me health-wise. I’ve cut right back on my hobbies and social activities because getting through a day at work is, most of the time, all I can manage. This has meant a huge cut in the amount of time I’ve spent with my friends.

For some reason, socialising is particularly exhausting when I’m unwell. All activities are exhausting to some extent, and pacing is a concept I am finally trying to increasingly bring into my life. I have always been very resistant to the idea of pacing – I don’t WANT to rest, I shouldn’t HAVE to rest, it’s not fair blah blah blah woe is me. But recently I have begun to accept that this is my life. Whether or not it’ll be my life forever, I really don’t know. I sure hope not, but right now this is what I’m dealing with and being able to pace, knowing when to stop and learning where my boundary lies on a particular day, is something I believe will be really important if I want to maintain a reasonable quality of life.

But for reasons I’m not quite sure of, social contact is one of the activities I have to be extra careful with. As a fairly introverted person I think part of it is just that it’s in my nature to find social situations quite tiring. But there definitely seems to be some relationship to chronic illness, and I’ve interestingly read some other blogs that have said similar things. Social interaction is just exhausting when you’re battling poor health.

An extra challenge arises when your health is unpredictable, because social events require plans, and sticking to plans can prove to be very tricky if you don’t know how you’re going to be feeling on any given day. There is nothing much that makes me feel worse than having to cancel on a friend because I’m too sick. Not only do I have the usual disappointment for myself not being able to do something I was looking forward to, but there’s the added guilt of having let your friend down last-minute.

So, much to my sadness, meeting up with friends has taken a bit of a back seat recently. Today I drove past a restaurant where me and one of my close friends like to go, and it made me think of her. She had a very important interview recently and I wasn’t able to offer her help in preparing for it as I had hoped, as I wasn’t very well. I was suddenly hit with a huge wave of guilt that I have really not been much of a friend to her recently. So I sent her a message to say I’m sorry I’ve not been much fun lately. And this was her reply:

“You don’t have to be fun….ever”

Those few small words meant so much to me that I can’t even begin to express it in words. Because, those words imply one thing – acceptance. My friend is accepting me exactly as I am right now. Not as the version of me I wish I could be more often. Not as the healthy me. Not as the fun me, the drunk me, the let’s-go-on-an-adventure me, the I-can-help-you-with-your-interview me. Just me.

I am very fortunate to have a handful of people who show me complete acceptance. My family are wonderful, never expecting anything from me, but giving me infinite love and support. Likewise, my boyfriend has shown me that it’s ok to rest, to take care of myself, even if that means sacrificing fun plans we have made together. And I have several friends who, despite all the times I’ve had to cancel my arrangements with them, have never responded with anything other than “get well soon”.

Self-acceptance is hard for us all at times, but it is especially hard when you crave a life that you cannot live. I long for good health, for my illness to be taken away and to be able to live a life without it. But I think it’s fair to say that for the forseeable future that probably isn’t going to happen. Life is now more about managing it than curing it, and with that comes a longing for all the things I feel I am losing or have already lost. It is a fine balance between acceptance and giving up. I don’t want to give up on the notion that I may achieve good health again one day. But I also don’t want to spend much more of my life wishing for things to be different, because when you are living in hope of a different life, you are wasting the one you already have.

Accepting a situation that you are unhappy with is not easy. Accepting a version of yourself that you wouldn’t choose to be, is not easy. But having total acceptance from the people you care about is one giant step towards self-acceptance.

Grief and chronic illness

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore.

Since starting this blog, I’ve been surprised at how much I’ve posted about emotions. I’m not a particularly emotional person on the face of it, and I find it hard to express how I’m feeling. But somehow it’s easier to write down how I’m feeling than it is to say it out loud. In fact, my very first blog post was about The emotions of chronic illness.

Today I’ve been thinking a lot about grief. Grief is a funny thing. It’s a strong word that we tend to reserve for the death of a loved one. But really, grief is much broader than that. A relationship break-up – grief for the person you once loved. Moving away – grief for the friendships you’re leaving behind. The beginning of winter – grief over the warm sunshine being lost. Ok, the last one might be stretching it a bit. But I do think that for those of us who get a bit blue at the end of the summer, there is a hint of grief in there.

In chronic illness, grief is a particularly strong emotion, and for me at least, it’s something I struggle with on a very regular basis. As the realisation sets in that your health problems are not going anywhere fast, you have to adjust to a new sense of self-identity, and with that, loss of the person you once were. This is something I find especially difficult because my health fluctuates greatly from day to day, week to week, month to month. This time last year, I was very unwell, doing very little except working and sleeping. This time six months ago, I was in India training to be a yoga teacher. And now, six months on again, I am somewhere in between, but certainly closer to the sick version of me than the healthy version.

I have been reflecting today on my time in India, and looking back on pictures, thinking how strong and healthy I looked. Don’t get me wrong, I was by no means in complete health, and the trip was a huge struggle for me, both physically and mentally. But I did it, I went there, I completed the course and I came home stronger in so many ways. There is absolutely no way I would be able to do that right now. The last month I have had more bad days than good days, and I know my body would not allow me to be working that hard at the moment. In fact, I haven’t been to any of my usual yoga classes for two weeks. That might not sound like a lot, but yoga is a huge part of who I am. It picks me up when I’m feeling knocked down, calms my mind, and reminds me of everything I love about life. So when I am too sick for yoga, I feel like a part of me is missing. And with that, comes grief.

But it’s not just about yoga. I look at my life now and I see only a fraction of the life I once had. So much of it is constrained by illness. I haven’t had a nice evening with a friend for way too long. I haven’t been for a run, or even a gentle jog, for a couple of years. I haven’t been able to scoff a bar of dairy milk for god knows how long and I know, I know, dairy milk is cheap and nasty and mostly sugar but I don’t care what you say, it’s delicious. I reflect on my life now and sometimes I wonder what I am actually achieving. The only thing I really have to be proud of at the moment is my PhD, which I have just started and am really excited about. But even that is filled with anxiety and limitation. Will I be able to keep up with the demands of my workload? Will the stress make me even sicker? Will I even be well enough to see it through?

I look back over my life and I used to feel so proud of who I was, of what I was achieving. I was such a go-getter. No, I still AM a go-getter, but it doesn’t feel like there is much I can actually go and get anymore. The extent of what I am doing, both in my day-to-day life and in the broader picture, is only a fraction of what it used to be. I feel as though my self-identity has totally shifted, and not through any choice of my own. The person I am now is not the person I want to be. Not the person I signed up to be. And I feel grief over the version of me I have lost.

Chronic illness is about so much more than the physical illness itself. It seeps into every aspect of your being, slowly making swaps and exchanges in every facet of life until one day, you wonder who you even are anymore. But, all is not lost. Chronic illness has given me things too, not just taken away. Although it may be hard to convince myself of it sometimes, I know deep down that I am not a lesser person now than I used to be, I am simply a different person. And ultimately, we are all changing every day, whether we like it or not. Perhaps chronic illness just better prepares us for the inevitable losses and gains of life.

When chronic illness rules the world

I’ve just got back from a wonderful few days in the welsh countryside with my lovely man. I hadn’t been feeling well for about a week before we went, but I felt well enough to go and we had planned to mainly do nothing, except a bit of walking if we could, so it seemed like a good idea.

Actually, it was a very good idea. A few days away from the hustle and bustle of life, just the two of us in the middle of nowhere. The chance to switch off from everything was amazing, and I’m so lucky to have opportunities like that. I follow many chronic illness blogs and I know that for many with chronic illness, trips away like that would be absolutely impossible, so I am grateful that I still have some freedom.

Nonetheless, there is, as always, a twinge of sadness that my illness still controls so much of my life. I still felt sick for most of the time we were away, and once in a while it would be nice to just be able to enjoy normal experiences like a trip away without feeling crap. We went for a nice walk, about 5 miles, on our first day there, which was so beautiful, but it definitely tired me out and I felt pretty bad in the evening. I’m such a go-getter, an active person, and I’ve adored the outdoors since I was a little girl. I remember as a small child jumping at the chance to help my Dad in the garden, and I think that love of the outdoors will be a firm part of who I am until the day I die. Nothing much makes me happier than the countryside. So in an ideal world, I would have spent the entire 3 days of our trip outdoors in one form or another.

I look back on who I once was. Many years ago, when my health was in a better place, I would have been up at the crack of dawn, going for a cross-country run, coming back for breakfast before heading out for a 10 mile walk, before heading out for a nice dinner and a few drinks. On this holiday, however, a gentle 5 mile walk was pretty much all I could manage.

Of course, I know that I am lucky I can walk 5 miles. There are many people in the world who are not so fortunate, and there are a multitude of reasons why people can no longer do things they used to once love, of which chronic illness is just one. I know these things, and I remind myself of how lucky I am every day. But sometimes, the sense of loss all gets a little too much and I roll into a big hole of self-pity.

Unfortunately today is one of these days. We were driving back from Wales and we were both feeling a little hungry, so we stopped at a service station to try and grab a snack. My boyfriend found himself a couple of tasty morsels, but there was nothing gluten & dairy free there for me except a packet of rice cakes. I bought the rice cakes. I actually quite like rice cakes, but it wasn’t quite the tasty wholesome brunch I was hoping for, and seeing my boyfriend’s scotch egg (God I LOVE scotch eggs!) was enough to push me into a full-blown wallowing, self-pitying tantrum.

It just feels that illness has taken so much from me, and that packet of rice cakes was all it took for me to reflect on all the things I have lost. Independence, fertility, the ability to pop out for a meal without having to trawl through online menus first, being able to stay up late without worrying how sick it’ll make me the next day, alcohol, cake, waking up for an early-morning run…. etc etc.

I always try my damnedest not to let illness rule my life. Quote from the front page of this blog: ” I do not accept that I should lie back and let Epstein Barr define me”. But sometimes it feels like I am fighting a losing battle. As time goes on I feel like it rules more and more of my life. It is on my mind every second of every day. The first thing I think when I wake up each morning is, how sick do I feel today? The last thing I think when I go to bed at night is, how sick will I be tomorrow? Every single decision I make – career choices, whether to go to yoga class or go home and rest, what to have for dinner, what time to go to bed, whether to make plans with friends – is made with chronic illness in mind. I am so sick of the control it has not only over my body, but my mind, and actually my entire life. I fear that the day is just around the corner when I will be entirely defined by illness. That, if asked to describe me in one sentence, my family and friends would say “she’s the one who’s always sick”.

Living on a knife-edge

Chronic illness is a constant weigh-up between looking after your body, giving it the best chance at wellness, and still allowing yourself to live a life and have a bit of fun.

I’m leaving my job of 4 1/2 years this week to begin a PhD. Last night I went out with my wonderful team of colleagues as a ‘farewell’, and needless to say I had several glasses of wine too many. I drink fairly infrequently these days, so my tolerance for it is pretty low and I am fully regretting my choice this morning!

For most people it seems that, although a hangover might feel like death at the time, a day or two later it becomes a source of humour; a light-hearted “oh silly me” and then it’s all forgotten about, until the next time they want a drink and the cycle begins again. But when you have chronic illness, something as seemingly mundane as a couple of drinks too many can be the difference between being well, and having a major flare of sickness that, for me, can potentially last days or even weeks.

Luckily for me, it is rare that one single event triggers a serious flare. It tends to be more of a cumulative effect – if I’m stressed, and I’ve had a bad nights sleep, and I have a few drinks, then that is likely to lead to a flare. Lots of people with chronic illness are even more sensitive than me and an alcoholic drink or two can be enough to push them over the edge. Nonetheless, alcohol absolutely has an effect on my general health and wellbeing, and on my body’s ability to cope with the inevitable stresses, physical and emotional, of life in the 21st century.

Chronic illness is a constant weigh-up between looking after your body, giving it the best chance at wellness, and still allowing yourself to live a life and have a bit of fun. Getting that balance right is one of the things I find hardest. It is difficult to know at what point sensible becomes obsessive, but equally when does letting your hair down become stupid and irresponsible? I guess these daily decisions are not unique to those with chronic illness, they’re decisions we all have to make. But with chronic illness, the consequences of those decisions can be huge, and therefore the stakes of each decision feel much higher.

I try my best to look after myself in all the ways I think make a significant difference. Mainly – I don’t eat gluten or dairy, I aim for 8 hours of sleep a night, I get moderate and regular exercise, I take time out for yoga and meditation, I try to remain calm as much as possible and avoid getting into unnecessary arguments with anyone, and I avoid sugar (this, I confess, is the hardest of all and the one I slip up with most often). The words ‘aim’ and ‘try’ are key here. I do my best. But I am human, and these things are hard. So therefore when I have a night like last night where I very clearly overdo it, I feel like a bit of a twat. What is the point of trying so hard, day in day out, to make careful and difficult decisions for the sake of my health, and then ruin it all by getting drunk? And the really stupid thing is, I don’t even like alcohol that much. Don’t get me wrong, an occasional glass of wine goes down a treat, but the feeling of getting drunk really doesn’t do it for me anymore, and the hangover is just horrendous. How on earth did I ever do this so often in my youth?!

Last year I gave up alcohol entirely for nearly 12 months and honestly, I didn’t even miss it. But at Christmas I decided I wanted one small glass of wine, and over the course of a few months that gradually crept up to where I’m at now. To be fair, I really don’t drink a lot by most people’s standards, but nights like last night just can’t happen anymore.

So, I officially announce to the world that I am giving up alcohol once more. This is one of those few sensible/fun decisions that is actually quite easy – my health is frankly more important than getting pissed.

Lonely companionship

Loneliness is a funny old thing. I’m 28 years old and I have a more active social life than I’ve ever had. I have so many wonderful people I can call friends, friends of all ages from all walks of life who each offer me something different but equally rewarding, and who I can hopefully offer something to in return. I have a big and very supportive family who all live nearby. And I have a boyfriend.

And yet, chronic illness leaves an inevitable trail of loneliness. The unpredictability of good days and bad days means that you can go from a social life in full swing to intense isolation at the drop of a hat. Days and evenings where your fun plans are cancelled in exchange for pyjamas and the television.

Even when I’m not physically isolated, when I manage to make it into work, to yoga class, or even to meet up with friends, I often do these things feeling a long way off 100%. There is a constant trade off between not pushing myself too hard but doing as much as I can for the sake of my mental health. And therefore, sometimes I do things when I know in my heart that my body wants me to rest. I think this is probably something I need to get better at; listening more to my body. But these are hard decisions to make on a daily basis, knowing that going out might make you sicker, but staying home might push you over the boundary into an emotional low.

And so, sometimes, I will be out and about, doing my daily routine while feeling unwell. And it is in these moments, when I am physically still connected to people, that I feel the most isolated. Because in those moments I look around and see my friends, family, colleagues, living the life I long to live. I am filled with envy for everyone who is able to get on with their day to day life without the constant worries of chronic illness. It is a stark reminder of how hard it is for anyone else to understand my situation, to understand how it feels both physically and mentally to be living my world. I guess, ultimately, we are all alone in our bodies; no one else will ever know what it is like to be us. But on those days when I am functioning on the outside as a ‘normal’ human being, while feeling sick and tired as though the life has been sucked out of me on the inside, I feel a sense of deep loneliness and isolation, no matter how physically connected I am to others.

With my usual positive hat on I am trying to find a nice, cheerful way to wrap up this post. But I promised myself this blog would be my place to write my true feelings; not a show for anyone else, but a diary for me. So, here it is. I’m 28 years old. I have friends, family and a boyfriend. And sometimes, I feel lonely.

It’s all in your head

I’ve just finished a book called “It’s all in your head: Stories from the frontline of psychosomatic illness”, by Suzanne O’Sullivan. I picked it up because it is relevant to my PhD, but it turned out to be a very interesting read and one that’s made me think a lot about my own health. It’s quite controversial, there are bits I don’t agree with, and some places where I think the author shows a naivety that is not uncommon among western doctors. However, it really was fascinating and made for easy reading.

I want to briefly digress with a game. I was first shown this during my psychology degree, and it blew my mind! It only lasts just over a minute, but you can read on if you’re not interested. I just wanted to include it for a fun illustration of the power of the mind.

Anyway, back to the book. Suzanne O’Sullivan is a neurologist specialising in psychosomatic illness. A psychosomatic illness is “a disorder characterized by physical symptoms of psychic origin”. I.e. physical symptoms that are considered to be caused by the mind. This dichotomy between mind and body really bothers me. Surely all illnesses involve both the mind and the body, to some extent? Depression is a mental illness but fatigue and appetite change are part of the diagnostic criteria. A heart attack is a physical event, but a period of intense stress or anger can bring one on [1]. Our mind and body are so intertwined that this continuing attempt to disconnect them just seems ridiculous.

The book contains a series of case studies of patients Suzanne O’Sullivan has seen, with a range of debilitating physical symptoms that have been diagnosed as psychosomatic. The wide range of symptoms are quite incredible: seizures, gastritis, migraines, tinnitus, loss of eyesight, paralysis. Patients have given up work, are bed-bound, have spent years undergoing hospital investigations, surgery, taking harsh medications. One thing the author does well is describe just how difficult life has and continues to be for these patients. Their symptoms are not ‘pretend’, they have genuinely disabling symptoms that affect their lives enormously. The core theme running throughout is that, regardless of the individual pattern of symptoms, these patients are at their wits end, desperate to have a diagnosis and a way forward.

This part of the book I can really relate to. My health problems continued for years before I got some answers, and having medically unexplained physical symptoms is difficult for so many reasons. Not having a diagnosis or label makes it hard to explain to other people. It means that you cannot research your own illness, and therefore you feel completely uninformed about what is going on in your body. No diagnosis means, almost inevitably, no cure. It is upsetting, stressful, embarrassing and frightening to have disabling symptoms for which your doctor can find no explanation.

The point in the book is that the search for a physical cause can in itself prolong suffering. Suzanne O’Sullivan says that, once people accept that their symptoms are psychosomatic, they can work with a psychiatrist to understanding the underlying cause, and therefore work towards getting better. Which, surely, is what all of them want? It’s an interesting point, and indeed in the book she describes patients who do get better, and whose quality of life improves hugely through working with a psychiatrist. She makes a case that this is nothing to be ashamed of. The sooner we as a society stop giving less weight to mental health than physical health, the sooner we can all accept the influence of our mind on our body, and we can all work towards living a healthier life.

If someone told me that my symptoms were psychosomatic, that there was no physical cause for them and that I should see a psychiatrist, would I do it? Actually, I think I would. In fact the book has got me questioning whether there could be more of a psychological influence to my illness than I realise, and whether it’s something I should consider. However, I do still have a problem with this way of thinking. Because, at what point should you stop looking for a physical cause? I did get a diagnosis, and a physical cause was found, I have chronic reactivating Epstein Barr which is shown through the particular types of antibodies present in my blood. Actually this is one of the parts of the book that irritates me. The author makes a (very brief) reference to EBV when she discusses chronic fatigue syndrome, stating that since most of the adult population has had it at some point in their life, most people will have EBV antibodies in their blood and therefore EBV antibodies do not mean anything for CFS. This explanation is scientifically incorrect. There are multiple types of EBV antibodies, and the pattern of antibodies demonstrates whether the person has chronic EBV. The bloodwork of someone who has continuous symptoms caused by EBV will be different to the bloodwork of someone who contracted it many years ago and made a full recovery. This is well documented in scientific research and I could pull out many, many papers to this effect. She also makes a comment later in the book that is quite derogatory to people who believe they have food intolerances, and makes a statement that again suggests she does not understand the latest science.

Now, she is a neurologist specialising in psychosomatic illness. She’s not an EBV expert or a food intolerance expert. No-one can know everything, not even doctors. However, it is exactly this attitude that frustrates me about western medicine. There is a belief that the doctor knows best, that their medical training is more important than the patient’s own experience of their body. Despite all of the knowledge gained by science, there is still so much that science doesn’t know. That is exactly what keeps scientists in the job (and exactly why I love working in it) – there is always more to learn. Just because something isn’t recognised by medicine currently, that doesn’t mean it won’t be recognised in 5 years time, and it is arrogant for any doctor to think that what they know now is everything there is to know.

And this is where I struggle with psychosomatic illness. On the one hand, if psychological treatment can help improve a patient’s quality of life then that is great. Clearly physical symptoms CAN originate in the mind. But does this mean that just because a physical cause for someone’s symptoms has not yet been recognised, that they MUST originate in the mind? In any case, the general take-home message of the book is one I definitely agree with. The mind and body are not distinct. We all need to accept that the mind can make us sick. We so easily accept that emotions can affect our body; no-one questions that when we’re happy we might laugh, and when we laugh we make a noise, our breathing changes, our body shakes, the muscles in our face contract…and that these changes happen largely out of our control. So why is it so hard to believe that psychological factors might make us sick?

I have been thinking a lot about this over the last few weeks, about how my own illness may be influenced by my mind. I think it is easy to get defensive about this. For whatever reason, we don’t want to accept that our mind may be influencing our bodies. By accepting that, you are somehow implying that you can control it, that you should be able to ‘snap out of it’ or that you are choosing to be sick. However, if I want to stay true to my own beliefs, to the things I have written about in this post, then I must be open-minded to the idea that those beliefs are relevant to my own situation. Blog post on that coming up.

 

[1] Mostofsky EPenner EAMittleman MA. Outbursts of anger as a trigger of acute cardiovascular events: a systematic review and meta-analysis. European Heart Journal 35(21):1404-10.