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).

The paradox of being a brain-fogged academic

In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares.

One of the symptoms I find increasingly challenging to manage, is brain fog. Fellow Lyme disease patients will know exactly what I’m talking about. For those who aren’t so familiar, brain fog feels a little like an alien has invaded your head.

Cognitive processes like thinking and remembering come so naturally to us when our brains are working as they should, that we take it completely for granted. Even I am guilty of this on my good health days. From having complex thought-provoking conversations, to making a shopping list or recalling a story from the day before; when it is easy, it is so easy. Our amazing brains work at incredible speed to help us think, recall, imagine and decide continuously throughout the day without us even noticing. How incredible is that?

And yet, the speed and ease of a well-oiled brain makes it blindingly obvious and excruciatingly painful when the same very brain, the next day or even the next hour, suddenly turns into a pile of mush.

I remember the first time I read about brain fog. I was reading this paper about the prevalence of long-term symptoms in patients previously diagnosed with Lyme disease, so-called ‘Post-Lyme Borreliosis Syndrome’, which I think equates to the term ‘chronic Lyme disease’ often used by patients, the existence of which is painfully denied by many doctors (a complex, confusing and distressing debate that I will save for another day).

I came across this research paper with Forest plots showing the prevalence of persisting symptoms post-Lyme infection. For those who aren’t familiar with Forest plots, they are graphs that show the combined results of multiple studies that all addressed the same question, giving you one overall result from all the previous studies combined. They really are beautiful things. So I was reading this paper, scrolling through the Forest plots of all the different symptoms that had been reported in patients post-Lyme disease. Fatigue was first, no surprises there. Followed by musculoskeletal symptoms like joint pain and muscle aches, again, no real surprises.

And then I scrolled down to this: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding. I nearly jumped out my chair. These were exactly the kinds of problems I had noticed in myself, but I had never really talked to anyone about. Cognitive symptoms, much like fatigue, are so internal and subjective, that it’s hard enough convincing yourself it’s not just all in your head, let alone trying to convince Joe Bloggs or, God forbid, your doctor. So I never spoke about these symptoms because, I’m ashamed to admit, I was afraid of what people would think. Was I really having memory problems, or was I just being a bit forgetful like everyone else? Were those difficulties finding the right words or thinking outside the box really a chronic illness symptom, or was I just having a bit of a dumb day?

When you have unexplained, undiagnosed illness, it really does mess with your head. I have hidden many symptoms purely through fear of not wanting to look like a hypochondriac. If you are trying to convince your doctor that you really do feel terrible and your illness isn’t all in your head, then conversations like “sometimes I can’t think properly” aren’t exactly the best way to go.

So, for years I pushed these cognitive symptoms to one side and convinced myself that they were nothing unusual. And yet this paper showed that all of these symptoms: memory problems, poor concentration, difficulties in formulating ideas, and difficulties in word finding, were reported significantly more frequently in patients who had previously been treated for a Lyme infection, compared to controls with no history of Lyme disease. For the first time I felt like it was ok to admit these were things I struggled with, because the science said I wasn’t alone.

Brain fog is horribly distressing. I will often find myself mid-conversation, in full-flow of a sentence, to suddenly find that I have absolutely no idea what the word is that I want to say next. I know what I want to say. I can picture it in my mind. I am thinking it in my head. But the word is gone. It is as though, suddenly and without warning, my brain has been emptied of all the knowledge I had 30 seconds before. It is unbearably frustrating. Similarly, I often find it impossible to think outside the box, to come up with new ideas, to learn. My brain loses the ability to analyse, to think, to be remotely creative.

These symptoms, on the surface, might sound mildly irritating. But the truth is, they are huge. In the world of academia, I feel like a cognitive tortoise, surrounded by elegant hares. I am constantly doubting myself. Feeling inadequate. Anxious that I might make a fool out of myself at any given moment. And not only that, but it is exhausting. The energy and effort it can take to perform a task that, on a good day, would be completely effortless, means there is little energy left for anything else.

I always try to end my blog posts on a positive note. Like a lesson learned, or a silver-lining to take away. But the truth is, I don’t know how else to end this post other than by saying: brain fog sucks.

 

 

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/

The worst diagnosis of all

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

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

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

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

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

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

 

Reference

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

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

Other resources

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 

Where I’m at now

Read My story Part 1 and My story Part 2

8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.

But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.

My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.

My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?

In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.

My story Part 2

Read ‘My story Part 1’

So I was taking Zoladex, the menopause-inducing drug, for 6 months. And during that time, something amazing happened. My symptoms went into complete remission. I didn’t have a single day of feeling unwell. In fact, I discovered a new level of ‘well’. I had oodles of energy, I started a bunch of new hobbies and I experienced what it is like to not have to wake up and contemplate how sick you feel today, but to just get up and go, knowing that you’re NOT sick.

Zoladex was a blessing and a curse. GNRH analogues are licenced for use up to 6 months but no more, because of a long list of risks (the big one being osteoporosis). So after 6 months it was stopped, and my cycles were instead suppressed through a double-hit of progestins: the progesterone-only pill (AKA the mini-pill), and the Mirena coil. But a couple of months after my last zoladex injection, I got sick, and this time it was much, much worse. I was permanently sick. There were no periods, no cycles, and no let-up from the symptoms, just a constant existence of sore throats, fevers, swollen glands and fatigue.

It was at this point that I really started to take some control of my knowledge. Working in academia, I used the sources I had available to investigate the scientific literature, to try and understand what my symptoms could be and why they were happening. Since I had got so much worse on high doses of progesterone, my reading led me to some research on progesterone intolerance. Specifically, women with PMS are thought to be intolerant to  progesterone, and oestrogen therapy can be really helpful for them. It didn’t fit my symptoms – I’d never really experienced PMS – but it still seemed like it might be relevant. I asked for my Mirena coil to be removed and stopped taking the mini-pill. I didn’t know what was happening in my body, but I did know that all this progesterone was doing me more harm than good.

I felt at this stage that I had exhausted all the help available from the NHS, and decided to seek help privately. After many weeks of researching, I found a privately practicing doctor who specialises in both women’s hormones and medically unexplained symptoms. At the end of 2015 I had my first appointment with her and instantly felt reassured by her extensive knowledge and understanding. She felt that my symptoms were likely to be viral in nature, and she explained how the immune system is differentially activated and suppressed by different female hormones.

In December 2015, 11 years after first becoming sick, I had a diagnosis. The psychological impact was HUGE. A diagnosis means you can research, you can make sense, you can explain. Prior to that, I felt like I was lost in the middle of the desert, with no idea how to even begin getting myself out.

I had high levels of antibodies for the Epstein-Barr virus, and the combination of antibodies showed that I had been infected with it a long time ago, and that it was reactivating. My bloodwork also suggested that I had PCOS – Polycystic Ovarian Syndrome. My oestrogen levels were that of a post-menopausal woman and my testosterone was high. I was started on a drug called Metformin which is used for diabetes, but is also given to women with PCOS since evidence suggests they are insulin-resistant. In addition, I was given bioidentical oestrogen to try and get my oestrogen levels within the normal range for someone of my age. The hope was that by balancing my hormones, my immune system would be able to take control.

A ‘where I’m at now’ post to follow…

 

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’