Out of sight, out of mind

ME/CFS Awareness Day: "This is not a day to arouse your pity. Its 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 its 1:30 in the afternoon. Despite having been asleep for 12 or more hours, I feel like Ive 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 Ive finished taking a puff of my inhaler, brush my teeth and wash my face, its time to lay down again because Im already starting to feel a bit spent.

By the time I get up to make myself some breakfast, its 3:30 pm. I walk into the kitchen, but forget what Im doing by the time I get there. I pause and within 15 seconds or so, remember Im supposed to make breakfast. But Im 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 Im done with that distraction, Im 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 Im good, I rest after breakfast. Most of the time Im not. I push myself through the constant miasma of exhaustion and open my laptop to check my email and the days 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, its 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 Im ready to crash by midnight I wont 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 dont 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 cant understand why you just dont 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 cant be bothered to spend any money figuring out whats 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 youre 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. Its 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 its 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. Its 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.
Likes: Joh


I really like this. Yes, this day for me is hard to feel like, "Yay, today is a day for me and this illness I have, and to educate." I know I have this illness. I know how awful it is. BUT, to many it is a joke. To many doctors, it is a joke. And when I post it on facebook, how many of my friends say anything?....one. And my other CFS friend said something. I know if I posted something about cancer, it would be a different story. But alas, every bit counts right? I am not as enthused anymore. I am envious of those who are. I used to have that piss and vinegar for change and got excited when they found a new virus. Not anymore. What will they do about it and why are people surprised when nothing has been done? Oh, that's right, they are new to this crusade. Or, they are better than I am.

I can totally relate to your going into the kitchen and forgetting why you are there and all of the distractions. You start one thing..or hope to and end up doing something totally different than why you went in there in the first place. You are definitely not alone. Many of us do that I am sure. I am constantly looking for my phone. I wish I had a clapper for it so I could clap and it would make a noise. I leave things back at the house that I forgot to bring with me to where I am going....like directions to where I am going. The new technological gadgets...they remain on the shelves because I cannot process the info to make the thing work. I recently just figured out how to add a playlist to my iPod. People look at me like...WHHHHAAAT?

A very good and true to life story of what it is like to live with this illness. Thank you.
i also liked your blog michelle, we could be cloned. It's a shame on the day thats supposed to be for recognizing this damn Disease, i didn't leave my Home.
I also didn't tell anybody on facebook, or myspace, or any other site to please Help. Because the Friends i did have over the years have faded away.thier off on vacations, having kids, having grandkids,Working & building new houses. you know the Norm :(

every now and then someone will say dont your have some muscle disease....Sigh. It's like Talking to a wall, so i don't even talk anymore. But alas theres nooone to talk to anyway. My Husband asked me what i was reading last Night, i told him an article on XMRV....." Whats that" i have been talking about it for 4 or 5 months now, and he dosent remember what it even is. Thats because he dosent give a crap, like most people that have never been touched by illness. him and others don't realize, it could so easily be them.
Thanks for sharing you day with me, too, Michelle.

I DO sympathize with your plight.

I don't know how you & other seriously debilitated sufferers don't go "round the bend" with the limits imposed on your daily activities.

It makes me appreciate how well I am, & how lucky I am to be so active.

I can only hope & pray that sometime in the near future, someone will find a cure & bring you a future that you can truly enjoy with your loved one.
Thanks for posting. It always helps so much to know we aren't alone.

I spent many, many years never telling my internet friends I was sick. I hid it. I wanted to fully separate my net life from my real life. And then, one day, I realized there was no point in hiding it. And by hiding it, we end up just as guilty as the government at covering it up. So, now, when I get the opportunity, like on Awareness Day, I shout it from the rooftops online. I don't care if the core of my net fans aren't interested. It will reach some of them and maybe it will help in the real world when they encounter one of us.

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