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.