Lyme disease, mental health & insomnia

Sleep is like health. You don’t realise what a luxury it is until you don’t have it.

The last couple of weeks I have, completely out of the blue, started struggling with insomnia. This is a common problem for people with Lyme disease and yet, somehow, I have always managed to escape it.

Well, not always. When I very first got sick as a teenager, one of my most prominent symptoms was severe depression. I now know this is very common in Lyme disease, but at the time my family and I had no idea why I was suddenly so mentally unwell. Seemingly out of nowhere I went from a happy, healthy child to a very distressed and mentally ill adolescent. Sleep problems are one of the 9 symptoms of depression as defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM) and can present as either a) insomnia or b) hypersomnia (i.e. sleeping too much). For those few years when I was very unwell, I experienced terrible insomnia. I remember being prescribed sleeping pills when I was about 14 years old, and getting high the first time I took them.

The first few years of my illness were dominated by mental health symptoms. I had physical symptoms too, but the mental health problems were severe and impairing on a daily basis. I had a myriad of treatments, from antidepressants to family therapy to counselling. Nothing made any difference whatsoever. Presumably, because none of it was really getting to the crux of the issue (the Lyme disease), although I guess I will never know for sure that the depression I experienced was 100% down to Lyme, and it would be naive of me to say otherwise.

Anyway, fast forward a few years, and as my physical health gradually worsened, my mental health actually improved. I won’t say that I was completely mentally healthy all the time. Firstly, because I really don’t believe anyone is mentally healthy all the time. Secondly, because there were lots of challenges associated with being ill. Dealing with feeling like crap so much of the time, managing a job and relationships, not knowing why I was ill, feeling dismissed and misunderstood by doctors, to name but a few. So yes, I had mental ups and downs and some days were a real struggle. But I didn’t feel depressed. Not in that pit-of-the-stomach, deep within your soul, “I am miserable” way. And so with that, the insomnia lifted.

Over the last 5 or 6 years, while my mental health has remained steady but my physical health has declined, my sleep has been good. I may have experienced the odd sleepless night if there was something particular on my mind, but on the whole, if anything, I slept too much. As is common in people with chronic fatigue and various other chronic illnesses, most nights I felt like I could sleep for 10 hours if I allowed myself, and no matter how much I slept, I woke up feeling exhausted, unrefreshed and a little hungover. I can’t say that’s been fun, but jeesh, it’s better than tossing and turning for hours on end.

The last few weeks, my mood has taken a bit of a dip. I don’t know why, but I know that I am not alone. Just as depression is common in people with Lyme disease, it is especially common while people are being treated for Lyme disease. Neuroinflammation, reduced neurotransmitter production, the stress of going through treatment…there are many hypothesised reasons why this might be. Along with the dip in mood, insomnia has reared its ugly head. And the trouble with insomnia, is that it’s a slippery slope. What starts off as one night of an unexplained inability to drift off, soon becomes worry about having “another night like that” as you become increasingly fixated on the clock and worrying about how many hours you’ll be behind if you fall asleep right this second.

And for those of us with chronic illness, there is an added pressure. We are repeatedly reminded of the importance of getting plenty of sleep to allow the body to rest and recover. My doctor lists sleep as one of the crucial “foundations” that need to be in good order before trying to tackle Lyme disease. If sleep is poor, the body cannot effectively heal, he argues. Makes sense to me, but I’m not sure that having your mind scream “YOU NEED TO BE ASLEEP RIGHT NOW OR YOU’LL NEVER GET BETTER!!” is especially conducive to drifting off into a peaceful sleep.

I had a few nights of taking some over-the-counter sleep meds, but they add an extra nice punch to the usual Lyme disease hangover I wake up with each morning, and I’ve yet to decide which is worse: staying awake all night, or spending an entire day feeling drowsy, irritable and like I had 10 cocktails last night (without the fun of having 10 cocktails). So for tonight, I have accepted my fate of not sleeping and am embracing the opportunity for late-night PhD reading (surprisingly productive), selling some shit on ebay (I have a surprising amount of shit), and of course, writing on my blog (unsurprisingly therapeutic).

Lessons I’ve learned from chronic illness

I have been thinking for a while now about how long it’s been since I last blogged, and how I really should make the time to write something. So I log on to my blog and it tells me it’s been two months since I last posted. Streuth! This blogging business is high maintenance I tell you.

As way of a brief update: I went to Washington DC in May and am currently 6 weeks into treatment. It’s been a bumpy road so far, but I’ve been warned that this is a long treatment plan and to expect a marathon rather than a sprint (hurray, because I had so much fun that time I ran a half-marathon…). My physical health has been very variable, but I must confess that my mental health has been consistently struggling. There you go. I’ve broken the British we-don’t-talk-about-how-we-feel tradition and am laying my cards on the table. Although to be fair, I work in mental health research so if us folk can’t be honest about mental health, we’re all doomed.

I’m not sure why my mental health has taken a turn, but I’m trying not to fixate on it too much. Embracing my inner buddhist, I am reminding myself that a) life involves suffering, and b) our expectations, desires and aversions create a second layer of suffering over and above the initial suffering. In other words, shit happens. But, we add a heap-pile of shit on top of the initial little turd by the way we relate to, and think about, the turd. Sorry for the shit analogy, I didn’t mean for that to happen. The Buddha expresses it much more eloquently:

“When an untaught wordling is touched by a painful (bodily) feeling, he worries and grieves, he laments, beats his breast, weeps and is distraught. He thus experiences two kinds of feelings, a bodily and a mental feeling. It is as if a man were pierced by an arrow and, following the first piercing, he is hit by a second arrow. So that person will experience feelings caused by two arrows.”

So with that in mind, I’ve upped my meditation practice and am focusing simply on trying not to exacerbate the suffering. Along this theme, I’ve found myself thinking a lot lately about all the things I have learned from chronic illness. So here are just a few…

1. Cherish the small things

When life is going well, I feel like we get a bit greedy. We take health, happiness, love etc, for granted. When it’s gone, your baseline level of expectation changes. And so, for example, when you’ve spent the last week in bed, stepping out of the front door and feeling a gentle breeze against your skin, makes you feel so alive. But isn’t it kind of sad that we don’t notice those things until we’re in a bad place? Over the last couple of years I’ve really started paying more attention to the little pleasures, and somehow even the darkest of days can feel a little brighter when you notice the sun shining or the sounds of birds or the kind person who held the door open for you. Cherish the small things, because when the big things aren’t going very well, they can be a surprising source of joy.

2. Keep hold of your real friends and let go of the rest

That old cliché is true, you really do find out who your real friends are in times of adversity. I have to admit that over the years, I have often been surprised by the level of support offered by people I would consider more acquaintances than friends, and the lack of support sometimes offered by those I thought were close friends. Of course, everyone has their own stuff going on and it’s unreasonable to expect any friend to be there for you 24/7, and I also recognise that being chronically ill can tip the balance of friendship somewhat. I, for example, cannot reliably offer any of my friends regular catch-ups over tea, because my ability to meet and do friend stuff relies on it being at least a sort-of-alright health day, and that is difficult to predict from one day to the next. But, my good friends, although I’m sure inconvenienced and perhaps a bit miffed that I can’t always be there, never make me feel guilty for that. They understand, they accept, and they are kind. My university friends, despite only managing to see them once or twice a year, will often send me a “how are you?” text or offer me a real listening ear on the rare occasions we get to meet up. Chronic illness is truly lonely and isolating at times, but having even a small handful of good friends makes everything feel a little less miserable.

3. You are the expert of you

I’m sure there are many medical professionals that would cringe reading this, but frankly I don’t care because it is one of the biggest lessons I have learned in my years of ill health. I don’t care what anyone says, you know when something is really not right in your body. Maybe it doesn’t make sense, maybe medicine has no explanation for it, maybe when you say it out loud you sound totally off your trolley. I don’t care, if it’s happening in your body then only you know what it feels like. There have been so many times over the years when I have tried to explain to a doctor a set of symptoms, or a feeling, or a pattern, and I have been told that what I’m describing is simply not possible, only to later discover through my own reading of the (scientific) literature, that it is, in fact, entirely possible. Doctors don’t know everything. Science doesn’t know everything. That’s what makes science so exciting, there are new things to learn all the time! I was told for years that it was impossible to have severe flu symptoms with every menstrual cycle. For about two years I had the exact same symptoms, at the exact same time, every single month. I knew, 100% without any question whatsoever, that this was linked to my periods one way or another. And the same GP told me month after month, “it is not possible”. Many years later I saw a gynaecologist who agreed it’s unusual but acknowledged, nonetheless, that there was no doubt it was happening. And I now know that menstrual flares are reported anecdotally by thousands of women with Lyme disease. Maybe you haven’t been to medical school, but you have lived with your body every day since you were born, and you know what is normal for you.

4. Be your own advocate

Related to number 3. This has been a hard lesson for me and one I am still working on, because being assertive does not come easily to me. I don’t want confrontation, I don’t want to have to argue my case, I just want to sit quietly in the corner and mind my own business. Working in academia has helped me massively with this, because you always have to justify yourself in science, and sadly, no-one will do the speaking for you. Only you can say what you need. If you’re not getting what you need, there’s no point sitting around being polite about it. The onus is on you, and only you, to create change.

5. Life isn’t a race

When I was younger I used to put so much pressure on myself to achieve, achieve, achieve. I, like many young people I’m sure, was convinced I’d be married with kids and a successful career by the time I was 30. Well I can tell you, 30 is creeping around the corner and I’m not married, am currently unable to have children and am going to be a full-time student until 2019. And I’m chronically ill; the limitations of which I could never have imagined as a child. But I am an infinitely better person now than I was then. I am more patient, more chilled out, more confident, more thankful, less pessimistic, less judgemental. I still have a way to go on all those things and more but that’s exactly the point – life is a journey, not a race to the end. There is no deadline for growth, for change, for learning. You haven’t suddenly made it the day you get married or have a kid or get a promotion or own a house. As soon as you reach one goal you will be thinking about the next in the hope that it will suddenly make things better; make you better. So what’s the point of racing so fast to the next goal that you don’t even stop to enjoy the scenery? Of all the things I have been forced to take note of in recent years, the thing that has changed me the most is simply learning to take it down a notch. As much as it pains me to admit it, I know that when I push too hard, my health suffers. That might be doing too much exercise, not getting enough sleep, having an argument, over-working, or just letting myself get stressed by day-to-day life. Chronic illness has forced me to pay more attention to the warning signs my body provides, and although the limitations of that can be very frustrating, it is also a relief to feel like I have permission not to constantly worry about expectations and achievements.

There are many more things that I have learned from chronic illness. Perhaps I will write a part 2 to this post at some point. When everything feels a bit overwhelming, it can be really helpful to take a step back and look at the bigger picture. For anyone looking in from the outside, my life is far more flawed now than it was 10 years ago, but yet, on the inside, it is so much more fulfilling.

The balancing act of good days & bad days

The last few months have been a strange time for me. After a relatively good January, February-March was one of the longest bad spells I have had for a while. The bad days far outnumbered the ‘good’ days. My health always goes in waves; bad patch, good patch, bad patch, good patch. But the length and severity of the bad patches, and the length and ‘goodness’ of the good patches, varies massively. I guess this means I have good and bad patches of good and bad patches?! That’s a head-scratcher.

A longer-term good patch might be 2-3 fairly bad days, followed by 4-5 pretty good days, then back to a few bad days, etc etc. February/March was a longer-term bad patch. This means several weeks at a time of bad days, followed by perhaps 1 or 2 days of feeling a little better, of hoping that the bad patch was over and I was on my way to a better place, only to be met by another few weeks of bad days. It is at these times that my mental health suffers most and I find it hard to cope. Having several weeks of bad days with only the odd good day or two in between, makes it feel very relentless. Somehow, having at least a few good days in a row makes me feel like I’ve had a bit of a break from it all. I get to do some nice things, meet some friends, hopefully do some yoga and tidy up the house a bit; before it all comes crashing down again. But the trouble with the longer-term bad patches, is that the good days are so massively outweighed by the bad days, that there is nowhere near enough time to fit in all the things that I want or need to do; the chores, the responsibilities, the workload, the relationships, and, most importantly, the fun.

And the strange thing is that those one or two slightly better days in between, can actually be worse than no good days. When it’s bad day after bad day, I somehow come to accept that I feel shit, and that there’s not much I can do about it. I know that nothing much is going to get done and instead, each day just becomes a quest for survival; the aim is simply to make it to the end of the day, no greater expectations. But when I have a glimpse of a better day, it gives me hope. Maybe a better time is up ahead. Maybe this is IT; maybe I am actually recovering and from now on it will just get better and better and I will never be as sick again as I was yesterday. Maybe tomorrow I will be able to clean the house. Maybe tomorrow I will be able to go to yoga class. Maybe this weekend I will be able to catch up with some friends.

I have written before about how important hope is in chronic illness. How, when all hope for a better future is lost, chronic illness becomes unmanageable. And in the bigger picture, I still think this is true. But day-to-day, hope can also be crushing. Because when I wake up tomorrow and it is, in fact, not a better day, there is a sense of loss. Grief, even, for the good day I thought was mine for the taking. Disappointment that I won’t be able to fulfil my hopes of getting the housework done or having a productive day at work. Guilt that I will have to let my friends down, for the millionth time, because those plans I had scheduled on a good day, are no longer manageable when today is a bad day.

On the good days, my awareness is suddenly brought back to all the things I want and need to be doing. I feel like I have been left behind from my own life. Like I have to catch up on all the things I missed out on on the bad days. And I have to suddenly catch up on it all right this second, before the opportunity is taken away again.

Chronic illness is the most enormous juggling act. I have the to-do list of a healthy person, with only a fraction of the days in which to complete it. The first good day after a bad spell brings so much pressure. What do I prioritise today? My instinct is to prioritise work. My PhD is important to me; it matters. And after several days or even weeks of feeling like I have only been touching the surface of what I want to be achieving, the sense of suddenly being able to work at full-pelt feels liberating. But then….what about the housework that needs doing? Those jobs that I simply have not been well enough to worry about, like scrubbing the shower or changing the bedsheets or emptying the bins. Wouldn’t it be great to get those jobs done so I don’t have to worry about them if tomorrow is another bad day? But then, what about yoga? Oh how nice it would be to roll out my mat and stretch my body and feel my breath and focus on how good I feel after being curled up on the sofa for so long. Or better yet, I could go to a yoga class and combine the joys of yoga with a change of scenery and some social contact. But, what about those friends I’ve been cancelling on recently? Wouldn’t it be great to give someone a call and catch up over a cup of tea? To be able to talk to someone about what a tough time it’s been recently and how grateful I am that today is a brighter day. To ask how they are and what has been happening for them. To chat, to laugh, to moan. To be a friend. And what about my relationship? Wouldn’t it be amazing to head out for dinner or go to the theatre or out for an evening walk? Wouldn’t it make me feel so happy, so alive, to be able to be a girlfriend and focus on his needs, on our needs?

How on earth does anyone make such choices? We all lead busy, stressful lives, and we all have to decide what we want to prioritise. But when the number of days available to you are cut so significantly, and when you have absolutely no idea when the next available day will be, how do you decide? And then there is the risk of trying to squeeze in too much; of tiring myself out and bringing myself crashing back down into another bad patch. Every tiny decision of how to spend my time feels like life or death because the consequences are enormous. There is a constant pressure to make the right choices. To not fuck it up, for myself or anyone else.

And yet, having to make these choices forces you to think about what is really important in life. I don’t want to live in a pigsty, but does housework really matter? When I’m on my deathbed will I look back and say “I wish I had changed the bedsheets more often”? My PhD is important to me and I want to do well, but as PhD students we are always taught to let go of perfection; to learn how to just be ‘good enough’. Perhaps I am lucky that chronic illness doesn’t even give me the option of perfection, that I have already had to learn how to be ok with being ‘just good enough’. So what really matters to me? Relationships. Nature. Yoga. Being present in the here and now. Making the most of all the things I am fortunate enough to have in my life because, as chronic illness has taught me, there is no guarantee that those things will still be here tomorrow.

Published on The Mighty

What chronic illness looks like behind closed doors

Many chronic illnesses are described as “invisible illnesses.” Depression, anxiety, chronic fatigue syndrome, Lyme disease, fibromyalgia, autoimmune disease… they all have one thing in common: most of their symptoms are invisible to outsiders.

Like many others with chronic illness, I have become very good at hiding how I really feel. Since I don’t generally walk around with a sign saying, “I have chronic illness,” my friends, family, colleagues and acquaintances (and that miserable lady in the post office who makes me want to cry on a bad day), would be forgiven for thinking I’m perfectly healthy.

Before I got sick, I think I’d have found this concept hard to understand. I’d have assumed that no one could possibly hide how they’re really feeling all the time, and that I’d notice if someone was really that ill. Now, of course, I know different.

When my sickness level is a nine or ten out of 10, I stay at home. I call in sick from work or work from home, I cancel my social plans, and I skip my yoga class. No one sees the really sick version of me. Well, no one except my parents and my boyfriend (lucky them).

When my sickness level is a seven or eight out of 10, I do minimal activities. I might head into the office for a few hours and leave at lunchtime. I might pop to the shop. But that’s about it. I’m likely to do these things with plenty of painkillers, and I’ll avoid speaking to anyone. If I seem quiet or grumpy or stressed, it’s probably just that I’m having a seven or eight kind of day, and I am just about able to make it to the office but I feel too sick for conversation.

When I’m at a five or six sickness level, I’ll do most of my usual activities. I’ll do a whole day at work, I’ll meet my friends for coffee if we’ve made prior arrangements. I do these things feeling very tired, and a little fluey, but it’s manageable and I’m normally able to hold a conversation and keep a smile on my face. Anything below a five on the sickness level is rare, but on the occasional level two/three/four days, I’ll be on top of the world! I’ll be the first one in the office and the last one to leave, I’ll be joking and laughing and making conversation. I’ll be at yoga and then I’ll meet a friend for dinner. I’ll be, for all intents and purposes, normal.

So if you see me and you think I look quite healthy, either it’s a particularly good day, or it is a moderately good day and I am just about holding it together. The true sick version of me rarely shows her face, and if I did, I really think my friends and colleagues would be horrified.

So what does chronic illness really look like? On those days when I wake up and can barely make it out of bed, or when I walk through the front door after a whole day spent in the office wondering how on earth I’m going to make it til 5 p.m… What does it look like, behind closed doors?

There are normally pyjamas, dressing gowns and blankets involved. I will often have my head in my mobile phone or on my laptop, researching this illness, trying to find the right balance of self-educating without causing panic and upset. There will be no makeup, no brushed hair, no nice clothes. There are lots of cups of tea. There may be a nice dinner if I feel able to make something, or if my boyfriend is around to cook, otherwise, there will be takeaway or leftovers or whatever scraps I can find in the fridge. There are few smiles, few jokes, few memories to be made. There are tears. Sometimes there are a couple of tears that can be wiped away and pushed to one side. Sometimes there are inconsolable sobs as the enormity of how terrible I feel and how tired I am of feeling terrible, comes to the forefront.

Behind closed doors, chronic illness is ugly. It is unwashed, undressed, it is grubby. It is lonely and isolating. It is both stressful and boring at the same time. Sometimes I feel like a fraud for writing about how hard chronic illness is, about how sick I feel, because I know that for anyone looking from the outside in, I look like a normal, happy, healthy young woman. Please know that I hide the truth. Please know that looks can be deceiving. Please know that behind closed doors, chronic illness really is an ugly old beast.

 

Originally published on The Mighty:

https://themighty.com/2017/03/what-living-invisible-illness-is-like-what-people-dont-know/

Lyme disease, hope, and the power of privilege

I recently read this story of an Irish man who has made a life-changing recovery from Lyme disease:

http://www.irishtimes.com/news/health/lyme-disease-patient-freakishly-well-after-us-treatment-1.2982020

Full recovery from Lyme disease is something all patients dream of, but for many, months or years of treatment still only result in minor improvements. The fear of failed treatment is something I, and many others, have to battle with every day. I remain hopeful, because hope is the only way illness is bearable. When you get sick with the flu, it sucks and you feel miserable, but you deal with it because you know it will end soon. In chronic illness there is so much uncertainty and unpredictability, and that, for me, is one of the hardest things to deal with. If I feel well today, that doesn’t mean I will feel well tomorrow. But I always hope that tomorrow will be a better day, that next month will be a better month, next year a better year. The lowest and darkest times in my journey with chronic illness have been those times where hope has faded and all I can see is a past, present and future defined by illness. Hope is an essential ingredient for getting through difficult times.

And yet, it is difficult to avoid the sense of impending doom when you read stories of people who are still unwell despite ongoing treatment. I try to avoid spending too much time on those stories because I know it is bad for my wellbeing and ultimately, if I become one of those patients then I will cross that bridge when I come to it, like all the bridges I have crossed before. Nonetheless, when you are caught up in a complex disease you seem to develop a success-story radar. Your nose starts twitching as soon as you get a whiff of an “I’ve recovered” story, because a) it gives you hope, and b) maybe you can learn something that might help with your own quest for recovery.

I approach such stories with an open-minded but cautious curiosity. Sensationalist headlines are all around us and it is hard to work out fact from fiction, especially since everyone has their own agenda. So, I read this news story about the Irish guy with open-mindedness, with cynicism, with curiosity, but also with happiness for him and hope for myself. And then I got to this:

“His family raised the $90,000 cost of treatment and accommodation through an online fund-raising campaign”

Anyone who has ever done any kind of reading or research into Lyme disease knows that successful outcomes are almost entirely reliant on private healthcare. The current NHS treatment guidelines are so unbelievably far behind the latest science that it is truly frightening. I could write an entire essay on that subject (which, as it happens, I’ve been avoiding because I honestly wouldn’t even know where to start). But private healthcare isn’t the full story. Many people will seek private healthcare for many illnesses, for a bunch of different reasons, and so there are private specialists everywhere. But in the whole of the UK there are about four or five private healthcare specialists who treat Lyme disease according to the latest science. In the whole of the UK. I am currently undergoing treatment with the only infectious disease doctor in the UK that I am comfortable seeing, that I believe will offer me treatments with the most chance of success without ripping me off. So, if he cannot help me, the only option left will be to seek treatment abroad.

And this is where Lyme disease discriminates. Those who have no savings and no finances to fall back on have very limited treatment options. Many people with Lyme disease are too sick to work, and have often been ill for some time before being diagnosed. There is one clinic that I know of in the UK that charges very little by private healthcare standards, but you are still talking a hundred pounds or so for a consultation, plus the cost of private prescriptions and travel to the clinic. For people who have very little, a few hundred pounds is an incredible amount of money to try to source.

The next step up is the other small handful of UK clinics that offer more advanced treatment, costing anywhere from a couple of thousand to perhaps £10-15k for a course of treatment. But Lyme disease is a complex illness, especially for those who have been sick for a long time, and there are still no guarantees of a recovery.

The final option is to seek treatment abroad. I know people who have had great success with specialist clinics in Europe, but the clinics with the very best outcomes appear to be in the US. It is hard to estimate how much treatment there would cost since I have not been through it myself, and since every patients’ course of treatment will vary. But you are probably talking a minimum of £10,000 and there really is no top-cap on what you could spend. Some people who do not get better with oral antibiotics have better success with IV antibiotics, which of course requires you to be in constant proximity to a clinic. I have heard of people who have sold their houses and moved their families abroad in order to receive such treatments.

Honestly, if someone told me I would 100% recover and be back to full health if I quit my job, took out a £75000 loan and moved to the US, I think I would do it. But no-one can ever promise a 100% recovery rate, and people are making huge sacrifices for an unknown chance of getting better. And anyway, how on earth would I get a bank to loan me £75k and even if they did how would I ever pay it back?

There are the occasional stories of patients who have recovered from Lyme disease through self-treatment and with very little money, but these stories are few and far between. The vast majority of the success stories seem to be, like the Irish story above, that have enormous financial implications. This might partly be a reporting bias. Perhaps the £75000 recovery stories make much more exciting reading than the £200 recovery stories, so they’re the only stories we hear about. But I know from patient support groups that for Lyme disease patients all over the world, finances are an enormous barrier to getting well and a huge source of strain.

I am very fortunate to have a family who have worked hard and saved hard their entire lives, and who brought me up with the same values. We are by no means rich or well-off, but I know there are many patients in a much worse position than me. The money available to me is not unlimited, but there is enough for me to seek some form of treatment right now. I cannot imagine living with the stress of this illness while knowing the treatment that seems to be helping will have to go on hold because there’s no money left, or having to make the choice between a prescription and food for the week.

So while recovery stories like the one above give me hope for myself and for all of the patients out there who are still suffering and still seeking answers, those stories also fill me with anxiety and sadness. Anxiety because maybe recovery is preserved for those who have £75,000 to spend. And sadness that the hope for a healthy future is limited, like so many other things in life, by the power of privilege.

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! 

Holding on to self-identity

I recently watched a TED talk by a lady called Jennifer Brea, who spoke about her experiences of Chronic Fatigue Syndrome/ME. You know that feeling when someone sums up your own experiences so completely that you feel a warm sense of belonging? When those thoughts and feelings that are so complex you can’t even completely make sense of them yourself, are perfectly expressed by someone else and you suddenly realise you are not as alone as you thought you were? That’s how this TED talk made me feel. If you are someone with chronic illness, if you know someone with chronic illness, or if you’re just a human being who’s interested in the experiences of others, please take some time to watch it:

TED Talk Jen Brea: What happens when you have a disease doctors can’t diagnose

She starts the talk by showing what her life used to be like. 28 years old, studying for a PhD, in a loving relationship and enjoying life. I recently attended a conference at which there was a presentation by someone from a CFS treatment centre, who said that many people with CFS share common personality traits: high-achieving, active, introvert and perfectionist. Apparently there is research to support this, although I’ve not read the studies myself. But it’s interesting, because I think my friends and family would probably say I fit that overall description, and from Jennifer’s talk, it sounds like she would too.

I have no idea why this would be. I might speculate that being an introvert and a perfectionist is mentally stressful, and being an active go-getter can be physically stressful, an maybe this puts a strain on the immune system. Or maybe when people who push themselves a little too hard get sick, they don’t rest as much as they should, and the body finds it harder to recover. I don’t know, these are just ideas, and I can think of many other reasons why this might be true.

Nonetheless, it strikes me as ironic that the people who are most likely to develop CFS are those who are least likely to enjoy resting and taking life slowly. Of course, I’m not suggesting for a second that anyone would enjoy chronic fatigue syndrome or any chronic illness, but for those of us who really enjoy being on the go, both physically and mentally, chronic illness is a bit of a slap in the face. And this led me to think about how chronic illness affects our self-identity.

During my good years, I was a very active person. I LOVE exercise. I would even say I get a little addicted to exercise. I used to run two or three times a week, go to various classes at the gym, lift weights and do high intensity interval training. I haven’t done any of these things for about 3 years. Actually that’s a lie. About 6 months ago after a particularly good week I decided to attempt a body pump class. The weights I lifted were about a quarter of what I used to lift two or three times a week during my good years. And yet that one class led to a major crash that took me about a week to recover from. It might sound a bit sad, but I think about body pump all the time. I used to love body pump. It was more than just a gym class. It was a hobby, a social activity, a way to keep fit and feel good about myself. Body pump was a part of my self-identity.

During my good years, I was also a runner. Admittedly, not a very good one. I was never going to make it to the olympics but god damn it, I loved to run. Just before my health really took a turn for the worse, I ran with a wonderful running group in the town where I live. I met some fantastic people. People I still call friends several years since I last ran with them. But still, it’s hard to keep in touch with your ‘running friends’ when you can’t run anymore. Running was a huge part of my life. It was something I did for me, to keep active, to get outside even on the coldest and wettest of days, to stay in touch with nature, and to have a good old chat with my running buddies. Running was a part of my self-identity.

During my good years, I used to love walking. There isn’t much in life that makes me happier than being outside. The beach, the forest, the moors, wherever – if it’s outside, I want to be there. I crave the outdoors. I am lucky that my health doesn’t restrict me as much as it does for many people, and I do still get outdoors sometimes. But it’s hard enough even when you are in good health to find the time and energy to go for a walk, so when you have unpredictable health to add to the list of things that make it difficult, trips to the countryside are a rare treat for me now. Being outdoors makes me feel alive, it makes me feel happiness and joy right down to my bones. Ever since I was a young child I have been an outdoorsey-person. My favourite thing as a kid was to help my Dad out in the garden. Being an outdoorsey person was not just for fun; it was part of my self-identity.

During my good years, I used to love meeting my friends for a drink on a Friday night. Ok, this isn’t exactly the healthiest activity in the world. But sometimes, there’s nothing that hits the spot quite like a glass of wine or two with your friends. A chance to forget about all your worries from the week just gone and the week up ahead, and let your hair down with the people whose company you enjoy most. These days, I really can’t tolerate alcohol. In fact since starting my Lyme disease treatment, I’m not able to drink at all due to drug interactions. I’m not saying I want to be drinking a bottle of wine every night, but it would be nice to have the option once in a while to meet my friends for a few drinks and know that it won’t put me in bed for a week. The freedom to go out for a drink was a right; a choice that was taken away from me. That choice was part of my self-identity.

During my good years, I used to love doing puzzles. I don’t mean picture puzzles like your granny used to do (although those are fun too!). I mean logic puzzles, crosswords, sudoku, brain-teasers. I may have got my love of the outdoors from my Dad, but I definitely got my Mum’s love of numbers. One of the symptoms I find most frustrating now is brain fog. It doesn’t happen all the time, and I definitely don’t get it as badly as many people with Lyme disease do. In fact, I count my lucky stars that I am still able to engage in my work, and it’s mentally challenging work at that. But I do struggle. On my sicker days, I struggle to find words. I know what I want to say in my head, but I can’t get the words out. I struggle to engage in anything mentally challenging and any attempt at an academic conversation has me totally exhausted. I have gotten pretty good at approaching my work flexibly, so that on those bad days I do the more mundane jobs, and I reserve the thinking jobs, the reading, the writing, for the good days. And I’m so fortunate that I have good days. But how I would love to not be restricted mentally, academically, and professionally, by my health. Being a thinker, an academic, a logic puzzle loving nerd; they were part of my self-identity.

I think you get the picture. Chronic illness changes your self-identity. It takes away the things that made you, you. And suddenly, through no choice of your own, you are a different person. I don’t think you really lose your self-identity, but rather, you gain a new self-identity. These days, I spend a lot of time doing crochet in my pyjamas, and honestly, I get a lot of pleasure from that. But if I had the choice, I would much rather be at the gym or going for a jog. Yoga is also a huge part of my life now, and the wonderful thing is that I never take it for granted. Every single time I roll out my yoga mat I am grateful that my body, mind and life circumstances have allowed me to be there. Many are not so lucky.

But if chronic illness changes your self-identity, what happens if you get well? Recovery is something that I think about and dream about every single day and I can’t even begin to describe what I would give to have my health back. And yet, there is anxiety about recovery. Because if I recover, if I am no longer a sick person – who am I? Many of the things that now make up my self-identity will once again be taken away. I won’t have to sit in my pyjamas crocheting a cardigan, but I might choose to. Holy smokes, I will have the choice! That sounds both wonderful and scary at the same time. If I recover, will I return to the running, gym-loving, weight-lifting, puzzle-completing nutcase I once was, or am I now a permanent crocheting, pyjama-loving, in-bed-by-9pm, stone cold sober, sensible person? Have I held on to my self-identity, or have I lost it forever?

 

 

My homemade handwash

Last month I wrote about my quest for a more natural lifestyle, free from nasty products known to cause harm, and I shared the recipe for my homemade deodorant. I was super excited when several people got in touch to say they were going to give it a go. To be fair, I am pretty easily pleased. Any reaction to homemade products besides an eye-roll, a raised eyebrow, or that look that subtly says “oh, you’re one of those”, and my day is made.

When I first started dabbling in homemade products I really had no idea what I was letting myself in for. It started on a bit of a whim. I’d stumbled across a blog post discussing the potential harms of ingredients in commercial deodorant, and recommending a homemade alternative. It sounded kind of crazy, but it also sounded kind of fun. Making homemade products is a bit like baking: you find a recipe, whip out your measuring spoons and off you go. Much like when I bake, I’m not very good at sticking to recipes. I like the idea of a recipe. A neat and tidy list perfectly packaged and ready to go. Oh how I love a good list. Nearly as much as my Dad, who has even been known to keep a list of lists. Amazing. But after a few attempts I inevitably run out of some vital ingredient and in my typical slapdash, bull-in-a-china-shop approach to life, I chuck in some other random ingredients and hope for the best. Needless to say, there have been many, many failed attempts along the way. But what fun is life if things always go right?

So I started making homemade products because it sounded kind of fun and I probably had nothing better to do one sunday afternoon. But a funny thing happens when you start living a natural lifestyle. It is oh so addictive! There is always more to learn, more to research, another recipe to attempt, and before you know it you are well on your way down the one-way road to hippydom.

I am still experimenting with lots of new recipes, including washing powder (which is super easy by the way), and even…..holds breath and hopes no-one judgy is reading….toothpaste! But given my ‘chuck it all in and hope for the best’ approach I couldn’t possibly share my haphazard experiments with you. Instead, here is one of my long-term favourites. My homemade handwash.

Makes about 450ml; not to teach your granny to suck eggs or anything, but if you want to make less, use less.

Ingredients

  • 250ml water
  • 60ml liquid castile soap. I like Dr Bronner’s but there are other brands too.
  • 25ml oil (jojoba, avocado, sweet almond, or even plain old olive oil)
  • 30ml honey – if you’re vegan or don’t have honey, you can leave it out and add a little extra oil
  • 1 tsp xantham gum
  • 20 drops of essential oils of your choice (optional)

To make

  1. In a blender combine the water, oil, honey, xantham gum and essential oils.
  2. Add the castile soap and pulse for a few seconds – castile soap is, well, soap, so if you put this in at step 1 you will end up with a big foamy mess.
  3. Pour into a bottle. You can spend lots of money on a posh soap dispenser or if you’re frugal like me (read: cheapskate), just reuse an old soap bottle when you’re done with  it.

 

 

 

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!