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.

Facing the fear: Low dose naltrexone

When I started this blog, I was unsure whether to include posts on specific treatments. By writing on a public blog, you are inviting opinions from anyone in the world who decides to read what you’ve written. I have surprised myself at how willing I’ve been to blog about quite personal topics, like my recent post on infertility, but writing about medications/supplements really frightens me, and I’m not completely sure why.

Perhaps its because I worry that someone will get in touch with evidence that a treatment isn’t as effective as I think it is, or that it has potential side effects I’d not considered. Then what would I do, if I realise that my original decision was misinformed? Or perhaps it’s because, in letting the world know what treatment I am trying, I open myself up to giving the world the disappointing news, somewhere down the line, that the treatment hasn’t helped. I’ve tried a few things over the years to help my health and honestly, most of it has only had a small effect at best. I’m kind of used to this disappointment now and when I try something new I always go in with equal doses of hope and realism. But the rest of the world may not be so accustomed to such disappointment, and how sad I would feel to have to break the news to all those who are rooting for me, that a treatment I’d posted so publicly about has not helped.

Then I think there’s a degree of shame when it comes to drugs. Somehow you are a failure if you have to resort to medication. People frown upon drugs, tutting at the thought of someone so young and apparently healthy on the outside popping pills at night. Similarly, I feel a huge sense of embarrassment about anything ‘alternative’ like supplements or dietary changes. They are so massively unaccepted by so many people in the medical community that I think we are programmed to believe that if it’s not powered by a drug company, it’s useless. I am a huge believer in holistic health and in the importance of nutrition for a healthy body, but somehow I still feel like I have to convince people that this is common sense and not hocus-pocus.

Anyway, whatever the reasons behind my fear, I am trying to follow the attitude I always set for myself, which is – feel the fear and do it anyway. I have lived most of my life with varying degrees of anxiety and many years ago I firmly told myself that I would no longer let anxiety rule my decisions. That’s why I’m in a job that requires me to give presentations, despite being incredibly socially anxious…I’m sure my brain must swear at me on a very regular basis.

So here I am, posting about a new treatment: Lose Dose Naltrexone, or LDN. Naltrexone is an opioid antagonist, and it’s licensed for the treatment of alcohol and drug dependence. Preliminary research has shown promising use of low doses of naltrexone (1-4mg; about 1/50th of the dose used for drug dependence) in treating a range of chronic conditions including chronic pain, autoimmune diseases like Crohn’s disease and Multiple Sclerosis, and viral infections including HIV/AIDS. Unfortunately, since LDN is no longer under patent, no pharmaceutical company stands to make any great profit from it. This means, in turn, that no drug companies have any motivation to fund clinical trials into its use. There are some small-scale studies that have found it to be successful in treating a range of conditions, but none big enough or conclusive enough to say that LDN should be used as a first-line treatment. It is therefore up to patients like me to stumble across it themselves, and find a doctor that is willing to prescribe it. It is perfectly legal, but requires an open-minded doctor that is happy to prescribe off-label.

Because of the lack of definitive research, it is not entirely understood how or why LDN works. But it is believed that its main mechanism of action is in its ability to increase endorphin release. Endorphins modulate the immune response. I am yet to read enough science to understand exactly how this happens, but interestingly I read today about a link between oestrogen and endorphins. Apparently oestrogens increase production of endorphins (*fascinating tidbit: the soaringly-high levels of oestrogen at the end of pregnancy mean that endorphins are super high during childbirth, right when they’re needed for pain-relief. Isn’t the human body incredible?). So, this potentially provides an explanation for my EBV-oestrogen link. I have always had more frequent and severe EBV reactivations when my oestrogen is low, which could be because when oestrogen is excessively low, my endorphins will be low too, and low levels of endorphins impair the immune response.

Anyway, I first came across LDN about a month ago, and have had it in the back of my mind since then. After a few weeks of poor health, I decided to pursue a consultation with a UK doctor who prescribes it. Today, I had that consultation, and she agreed to support me in a trial period of LDN. So, as of next week, I will be taking LDN. I have been given all the warnings that a sensible doctor should give: that it’s not a miracle cure, it’s not guaranteed to help, and I could experience side-effects. Generally LDN is being used for autoimmune diseases, and the only evidence I have found for its use in EBV is completely anecdotal (confession – most of it is actually on a Facebook group, which in the academic world of ‘knowing your sources’, really is about as unreliable a source as you can get). Nonetheless, it has a good side effect and safety profile as far as the evidence goes, and having weighed up all the evidence I am pleased to at least be giving it a go.

Here’s hoping, with my ever-realistic hat on, that I may see at least some small benefits from LDN.

http://www.ldnresearchtrust.org/sites/default/files/2016-LDN-Factsheets.pdf 

Relationships, love and infertility

This feels like an oddly personal topic to be writing about on a public blog, especially for me; a private, reserved, keep-myself-to-myself kind of person. But as I’m getting older, infertility is creeping up my list of things I need to be worried about. For me, fertility is a multi-faceted source of conern.

A little under a year ago I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. Women with PCOS either don’t ovulate at all, or ovulate irregularly and infrequently. Without ovulation, there can be no conception. And so a common symptom of PCOS is infertility. In fact, many women aren’t diagnosed with PCOS until they attempt to conceive and find that they can’t. Luckily for most women with PCOS, there is a drug called Clomid or clomiphene, which can be used to stimulate ovulation and has a pretty good success rate. When Clomid is unsuccessful, IVF is usually the next option.

For me, however, those options are pretty much void. Because my EBV symptoms are so closely tied to my hormones, I currently take bioidentical oestrogen. My own oestrogen levels are excessively low due to PCOS, and when my oestrogen levels are lower, I get sicker. So I supplement with oestrogen and I feel somewhat better. I’m still trying to get my head around this relationship. It seems like friggin’ sod’s law that I would have chronic EBV which is activated when my oestrogen is low, AND PCOS which means my oestrogen is chronically low. I often think about this. I believe that a healthy body is a healthy body, and an unhealthy body is an unhealthy body. I just don’t think that diseases can be independent of each other, and I wonder if my hormones and therefore my PCOS, would improve or even resolve if my body could effectively deal with the EBV. Whether or not I will ever find out the answer to that question, I don’t know.

The catch-22 is that fertility drugs, including Clomid and those used for IVF, would require me to stop taking oestrogen. And that would mean being horrendously sick. It would mean giving up work, giving up my social life and hobbies, and spending the vast majority of my time in bed, horribly sick. This isn’t just a glass half-empty moment; I’ve been there before, with my own super-low levels of oestrogen and the EBV in pretty much a permanent state of activation, and it wasn’t pretty.

So, if at some point in the future I wish to have children, there’s a good chance I’d need to stop the oestrogen in order to do so, and I have to seriously question whether I want children that much or not. The other factor of course, is that raising children whilst chronically sick would be quite a challenge. I already struggle to keep up with the demands of life. A full-time job is extremely difficult at times, and if it weren’t for my current employer’s flexibility with working patterns and allowing me to work from home, I probably wouldn’t have a job at all. Household chores are also difficult at times, and I’m lucky to have a boyfriend who shows me endless amounts of patience, understanding that sometimes I can do more, and sometimes less. But add looking after children to that mix, and I honestly don’t think  I would manage.

So ultimately, I think my ability to have children rests entirely on finding some answers to EBV, and finding a way to improve my quality of life. I gave up on any realistic chances of finding a complete cure some time ago, but I do hope that I may be able to achieve a level of health that will allow me to conceive and raise children.

I’m 28 years old and, for the first time in my life, I have a man by my side who I think I’d quite like to be the father of my children. That is a wonderful thing, but it brings with it many emotions. Sadness and grief that I may never be able to fulfil that dream, disappointment that it might never be the happily ever after I dreamed of as a child, and worst of all, guilt that not only may I not be able to realise my own dreams, but that I may kill someone else’s dreams too.

For now, I am trying to live by the rules I always made for myself. Live for today, not tomorrow. Focus on what you can do, not on what you can’t do. And think about what you have got, not on what you haven’t.

 

When life’s an experiment

For the last couple of years, my life has been one giant experiment. Since getting a diagnosis, the experiment has at least been somewhat focused. When you don’t even know what the problem is, finding a solution is next to impossible. In fact, for most of the years prior to getting a diagnosis, I don’t think I really even bothered to look for solutions outside of my GP’s office. I think we live in a society where the doctor is assumed to have the answer to everything. If you’re sick, they’ll do a test, tell you what’s wrong, and give you a pill to fix it. Putting so much faith in medicine’s ability to fix it means that if medicine can’t fix it, life feels pretty grim. Where do you go from there? If the doctor doesn’t know, who the hell does know?

It was probably just over a year ago that something changed. I spent several months being sicker than I’d ever been, and my mindset changed. This couldn’t just be it. This couldn’t be what the rest of my life was destined to be like. If the doctors didn’t know, I’d at least try and work it out myself. It was at that point that I started looking for possibilities outside of medicine. Nutrition and wellbeing became a large focus of my efforts. Coming from a science background, I think making the transition away from medicine was hard for me. A lot of ‘alternative’ (which I now know is really just a word for ‘not funded by the drug industry’) treatments are really scoffed at by people in the medical community, and I was surrounded by that community both in my professional and personal life.

At this time a year or so ago, I read a lot about food intolerances contributing to chronic illness, and I decided to get tested. There are a LOT of nonsense food intolerance tests out there. And this is where it gets tricky – trying to tease out the sensible from the stupid. But I found a blood test that detects antibodies to certain foods and food components, and I was happy with the science behind it, so I went for it. It showed that my immune system was reacting to gluten and dairy, so I eliminated both completely. It’s hard to know exactly how much of an effect that had. Ultimately, I was still sick. I still had the usual symptoms of EBV. But there was a definite improvement in my fatigue and some other weird symptoms that I’d never really even th0ught about. I used to get really severe mouth ulcers. I almost always had at least one mouth ulcer and anything up to 15 at once. They were so horribly painful that I dreaded anyone speaking to me, knowing that the pain of talking back would be unbearable. I also used to get a rash called folliculitis, inflammation of the hair follicles, on my chest. When I cut out gluten and dairy, both of these things improved significantly.

Gluten has been permanently removed from my life ever since, and I don’t really miss it. You can get gluten-free everything these days. But last Christmas, I was craving cheese. Dairy felt much harder than gluten because there aren’t the same dairy substitutes, unless you want to consume soy all day long. So I reintroduced some dairy, starting with cheese, then butter, then yoghurt, and finally, a couple of weeks ago – milk. I went for organic whole milk thinking it was least likely to cause upset. For the last two weeks, my mouth ulcers have come back with a vengeance. Just as one starts to heal, another one rears its ugly head. God I hate those things. And that weird little rash has started to creep back in too.

So, it is with much sadness, that dairy has been booted out the door again. When I think about it, I don’t really agree with eating dairy anyway. I believe that cow booby-milk was designed to be fed to baby cows, not adult humans. It kind of makes sense to me that a lot of people might have problems with dairy, because I just don’t think we’re designed to consume it. But alas, there’s no denying that having a big dollop of clotted cream on your strawberries just ticks an awful lot of boxes. Eating out becomes tricky too – most places cater for gluten free, and a lot are ok with dairy free too, but somehow when you ask about both, you get an ‘oh-she’s-one-of-those‘ eye roll.

Of course, if it helps me become ulcer-free once more, it’s a small price to pay. But that’s the trouble with this god damn experiment. It’s just that – an experiment. I really have no idea if dairy is the issue here. It’s a stab in the dark based on a rough correlation I think I’ve seen. But who really knows? There are so many factors at play at any given moment that it could be anything. And honestly, when the uncertainty and potential risks of every single life choice, down to whether to have whole milk or soya on my granola this morning, are so huge, life feels a little depressing.

The advantage of disadvantage

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

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

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

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

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

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

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

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

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