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”.

The emotions of chronic illness

It seems strange that in deciding what my first blog post should be, I have focused on the emotions rather than the physical symptoms. I am a bit of a keep-it-all-inside kind of person. Battling with this illness for 12 years, friends have come and gone, relationships have ended, that’s just the way of life. There is only really one person who has been there through it all, and that’s my mum. So I suppose you get used to dealing with it all yourself. What’s the point of talking to someone about how you feel when they can’t possibly understand what you’re going through, and when they might not be in your life anymore come next week, next month, next year?

When I’m sick, all my energy is taken up with the sickness, so that talking about how I’m feeling becomes even harder than normal. I’m sure there’s a primal, physical aspect to that – your body needs to preserve energy to fight the infection, right? Social chit-chat is definitely very low down on my list of priorities when I’m feeling sick, which must be pretty hard for my loved ones to deal with sometimes.

Chronic illness is a constant cycle of emotions. When I’m sick I’m filled with sadness, despair, hopelessness, disappointment. When I get better there’s happiness, excitement, hope, but there’s still anxiety, fear, worries about the future.

I am always seeking new information that may help me – new supplements, a new diet, a new medication, a new doctor. But sometimes that information can be overwhelming. I have read about so many different diets that might help EBV. No gluten, no dairy, paleo, vegetarian, autoimmune protocol, low sugar, low carb, and my most recent discovery – low arginine (blog post on that coming up). Then there’s the supplements: multi-vitamins, fish oil, monolaurin, cordiceps, colloidal silver, lysine….I could go on and on. In theory, all this information is great. But where the hell do you start when you are all on your own with a million different things that ‘might’ make you feel better? How long do you try something before concluding it hasn’t helped? Do you do one thing at a time or just bung them all in there and hope for the best? This is where my scientist-researcher brain probably makes life harder. How can it be a controlled experiment with so many factors at play?

So then comes the despair and hopelessness. How can I possibly get better if I have absolutely no idea what might actually help? In science you’re always taught to think about your sources. A peer-reviewed academic publication is a more reliable source than a random comment from one person online. But what do you do when 100s of people say that xyz has helped them with their illness? Is it worth taking the shot, even though your doctor would probably laugh in your face if they knew what you were trying?

And then I feel angry that I am spending so much time and energy researching these things when I could be enjoying life. At what point does information-seeking become obsession? When should you let go and accept the situation for what it is? It is a fine balance between not giving up the fight for good health, and not aimlessly searching for a cure that doesn’t exist.

But the worst emotion, the absolute worst, is loneliness. I am very lucky to have a wide support network of friends and family. But none of them have experienced chronic EBV. Almost all of my friends see me only when I am well, so they truly have no understanding of what my life is really like, and I can’t expect them to. Even my closest loved ones still don’t have to experience it first-hand. No-one else can share my physical experience, it is mine and mine alone, and that is a lonely old place to be. I think that is why I spend so much time researching online. There is a strange comfort in reading a story that mirrors your own, in realising you are not alone. At least I can be thankful of living in the age of the internet, where I can connect to other people who are sick too.

In fact, I have a lot to be thankful for. Love, support, a career, a roof over my head, and a body that, despite its flaws, still allows me to practice yoga sometimes, or feel the sand between my toes. I am not sick all the time. The unpredictability of how and when I’ll be sick is one of the things I find hardest, but at least it means I have days where I can function like a normal human being. In fact, at the moment, I have quite a lot of those days. I get to play with my nieces, practice my headstands, make love to my boyfriend (sorry mum). And chronic illness at least means that I will never take those simple pleasures for granted.