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.

 

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.

An introduction

So, here it is. I’ve considered blogging for a while now but always found suitable excuses. I don’t have time, I’m crap with technology, who’ll want to read my blabber anyway? Today I convinced myself that a blog would be a good way to document the continual experiment that is my life. If it happens to help someone else along the way, great stuff.

So this is me. 28 years old, in my 12th year of an ongoing battle with the epstein barr virus AKA glandular fever. A scientist at heart, my life has become one long experiment of drugs, supplements, diets, lifestyle changes, and god knows what else. With so many factors to consider or – in science talk – too many variables to control, it can all feel a little overwhelming sometimes. So this will be my place to document the good times, the bad times, the diets, the pills, the doctors, the emotions, and whatever else I feel like writing about.