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.

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 

My story Part 1

My health problems started when I was about 16. I had been on the contraceptive pill Dianette for a couple of years for acne. My skin cleared, but I became severely depressed. I now know that Dianette has been linked to depression, so who knows, maybe that was the cause, or at least a factor.

Anyway, a couple of years after being on Dianette my GP switched me to a different pill called Yasmin. And it was then that my life as I know it now began. For those who aren’t familiar with how the pill works, you take it for 3 weeks and then have 1 week off, during which time you have a bleed, akin to a menstrual period, although biologically speaking it’s actually not a period at all. My first ‘period’ on Yasmin I was sick. Really, really sick. A couple of days before my period began, I got a sore throat, fever, the glands in my neck swelled up like golf balls and I had indescribable fatigue. This got worse over a few days until I was bed-bound. After 5 or 6 days, as I began the next 3 weeks of contraceptive pills, it slowly dissipated and I felt fine again. The next month, the same thing happened again, and the next month, and the next month. It took about 6 cycles before I acknowledged I had a problem, and I needed to speak to a doctor. My GP told me it was nothing to do with my menstrual cycle or the pill – that was impossible. So I continued. In fact, this continued for several years. Every couple of months I’d be at the doctor’s office begging for them to do something, trying to convince them that this was related to my cycle. Looking back, I believe that that doctor really failed me. Every single month on the exact same day, I would get the exact same symptoms, that would last the same length of time. I KNEW this was linked to my cycle, but the doctor said it wasn’t, so that was that. I lived a very difficult life for those few years, in my first full-time job I got multiple warnings for excessive sick-leave. One week out of every four, I was completely bed-bound.

One day I saw a locum GP who suggested we change my contraceptive pill. Overnight, my sickness stopped. I had a normal ‘period’ (those pill-induced periods that aren’t actually periods, but no-one ever tells you that) every month, I wasn’t sick, I had energy, I was well. I was at University at the time, and life was pretty good. I put my previous years of sickness down to some kind of bad reaction to Yasmin, and assumed that was that.

And then one day, a couple of years later, it started to come back. Not as clear-cut this time, not a straightforward one week out of every four. I would still get sick with my periods, but not always as severely, and I started getting sick at other times too.The symptoms were always the same: a sore throat as bad as my childhood bouts of tonsillitis, hugely swollen glands, fever, and fatigue. The word ‘fatigue’ doesn’t really feel like an appropriate description. I always feel frustrated for people who have a diagnosis of Chronic Fatigue Syndrome, because I can only imagine they hate the word fatigue as much as I do. Fatigue is where you’ve done a lot of exercise and feel a bit worn out. Fatigue is when you wake up not quite feeling refreshed. You say ‘fatigue’ and you don’t picture a person who no longer has the energy to speak, who needs to lie down for an hour after making a trip to the bathroom, who as a fully-grown adult requires their mum to be their carer. The fatigue was absolutely unbearable.

These symptoms went on for a few more years, ebbing and flowing in severity, but always there, hiding in the background waiting to pounce at any moment. And then one day at one of my many GP appointments, I was advised to go the NHS walk-in centre in my town which specialises in contraceptive services. I think that in my GP’s exasperation, sending me elsewhere was really just a way to get rid of me; a way of dealing with a complicated case who was just too much trouble to spend time thinking about. But at that walk-in centre, I met the first health professional in all those years who understood. I still remember it now so clearly. She was a nurse. Her name was Penny. When I cried she put her arm around me. She listened to my whole story and wrote down notes on the only piece of paper she had to hand; a sick bag. She got me referred to a specialist GP, who then referred me to the hospital. I wrote her a letter to say thank you afterwards, and she sent me a card back, which I still have now in my drawer of keepsakes.

I was referred to a consultant gynaecologist, who was a lovely man. Once again, I told my story. When I’d finished he looked at me and said “How on earth have you coped with this?” I said “I haven’t”. He was baffled by my symptoms. His plan of action was a stab in the dark, but at least he was trying to help me. He wanted to use progestins (the artificial form of progesterone) to suppress my own cycle, hoping that with no periods I would have no sickness. But in order to get me there without causing me lots of unpredictable bleeding, and therefore unpredictable sickness, he decided to use a severe hormonal treatment called Zoladex. Zoladex is one of many drugs called GNRH analogues, which effectively put your body into a chemically-induced menopause. It is used mainly for women with breast cancer, because it completely shuts down your own production of oestrogen, which feeds many breast cancers. I was put on this drug for 6 months. When I tell people this, I often get raised eyebrows. It sounds kind of severe. It was severe, and it wasn’t a decision I took lightly, but I was sick, and I was desperate.

Read ‘My story Part 2’