Out of sight, out of mind

ME/CFS Awareness Day: "This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation."


The most depressing moment of my day is when I wake up. I turn over, look at the clock, and see that it’s 1:30 in the afternoon. Despite having been asleep for 12 or more hours, I feel like I’ve barely slept at all. I lay back down for a few more winks like a thirsty man in the desert shaking the last few drops out of his canteen. A half hour to an hour later I finally acknowledge there is no more sleep to be had and drag my weak, achy body out of bed.

After taking my morning meds I head to the bathroom. Once I’ve finished taking a puff of my inhaler, brush my teeth and wash my face, it’s time to lay down again because I’m already starting to feel a bit spent.

By the time I get up to make myself some breakfast, it’s 3:30 pm. I walk into the kitchen, but forget what I’m doing by the time I get there. I pause and within 15 seconds or so, remember I’m supposed to make breakfast. But I’m not sure what needs to be done first to make breakfast. I pause again to ponder the chronology of making breakfast and while doing so I get distracted -- the plants need to be watered, a can on the counter needs to be recycled, [insert other random distraction of your choice]. Once I’m done with that distraction, I’m back to square one, namely, why did I come into the kitchen? Oh right, to make breakfast. So, what do I need to do to make breakfast? Lather, rinse, repeat.

If I’m good, I rest after breakfast. Most of the time I’m not. I push myself through the constant miasma of exhaustion and open my laptop to check my email and the day’s news.

Soon my boyfriend will call -- the highlight of my day. He lives in the UK and since I am too ill to get on a plane and the US government will only allow so many visits a year, this is how we have a relationship. In addition to the tremendous barriers to immigration our government has erected, I -- like millions of others on SSI -- would lose my disability benefits if I married. Using a headset as I cannot hold the receiver for more than a few minutes, we chat for an hour or so. After saying our good-byes, it’s time to rest for an hour - or three.

Dinner is often a repeat of breakfast, except longer. After a hard day of sleeping and disorientation my bewilderment relocates to the bathroom as I get ready for bed. However, even though I’m ready to crash by midnight I won’t be able to sleep for another hour or two -- despite the many narcotics and sleep medicines.

This is the daily life that awaits you should you ever get ME/CFS -- along with the burning pain, constant flu-like state, and never-ending pseudo-hangover. Oh and don’t forget the ridicule, isolation, and constant battles with insurance companies and/or Social Security to prove that you really are sick. Losing your friends and family because they can’t understand why you just don’t get your act together. Having doctors tell you that you just need to exercise and/or see a psychiatrist. Being forgotten about because nobody can see the housebound. Left in bed to rot away the rest of your life because your government can’t be bothered to spend money figuring out what’s wrong with you and the little bit of money they do spend is on studies about how you surely must have been abused as a child, thus developing poor coping skills to deal with stress. Or if you’re in the UK or the Netherlands, they spend it on clinics to brainwash you about your “false illness beliefs”.

And yes, I say you because it could very well be you. There has long been evidence that this is an infectious disease and the recent research linking ME/CFS to the third human retrovirus, XMRV, (the other two are HIV and HTLV) makes this all the more likely. Indeed you might even have it already since as many as 3-4% of the healthy population may be carrying the virus, making you just one flu-bug away from a lifetime of spending a half hour each day trying to figure out how to make breakfast (and a lifetime that might well be cut short by cancer at that). The governments of Canada and New Zealand decided recently to ban anybody who has ever been diagnosed with ME/CFS from donating blood, lest the spread of XMRV continue unchecked (Australia is apparently soon to follow). The US, UK, and other countries have not yet chosen to protect their populations. As a fellow ME/CFS patient asked the other day, “Which country do you want to be in for your next car accident requiring a blood transfusion?”

Today is ME/CFS Awareness Day. It was intended to make people aware of the suffering of those of us who have had the bad luck to get this disease and to ask for your help in getting government attention and research funding. But this day is also to make you aware that you too could get this disease and lose much of the life you hold dear. It’s to make you aware that insurance companies have used a small group of psychiatrists (who have lined their pockets with insurance money) to make sure that if you do get this disease, you will be labeled “depressed” and refused the benefits you need to live on (and which you were paying for while you were working). And it’s to make you aware that for more than 25 years your government has not been particularly interested in protecting you and those you love from this disease.

This is not a day to arouse your pity. It’s to arouse your outrage, anxiety, and agitation. Your government needs to know it should be spending your tax dollars to protect you from a cancer-causing neuro-immune disease. Yes, we patients need your help. We are desperately ill and need proper, effective treatment. But please realize that by helping us, you may well be helping yourself.