What I Want (and Don't Want) as Someone With ME/CFS

“How are you?” Three relatively innocuous words, a conversionary preamble, a courtesy, a pleasantry…but go on, be honest – how ready and prepared are you to hear the truth? The real truth – with no judgment, without feelings of “oh god, not again?” You see, we don’t like a
“moaner.” No one actually likes to listen to someone tell the truth, the real truth, particularly when it’s painful and uncomfortable and unpleasant pretty much every day.

Why is that? Is it because we think it’s self-indulgent? Is it because we in society think we should just “get on with it” and not dwell on what is unpleasant and difficult, or is it because we have grown to only share the reality of our lives with those closest to us and only on occasion with ourselves? When asked this question a year or so ago, a friend who shall remain nameless said to my reply of “meh:” “Oh, come on Em, try and a be a bit more positive, you may feel a bit better if you do!” And therein lies the problem for me – and M.E., too. These three relatively innocuous words are actually a loaded gun. So invariably what comes out of my mouth tends to be an excuse for the real answer because, to tell the real truth, some days are just too hard, too boring and who the hell has the time to actually listen to the truth, the real truth? Before I became really ill I wouldn’t.

But the truth is hard and difficult and painful. It is that way for the 250,000 individuals in the UK who struggle with a condition that for so many years was poo poo’d by the medical profession and is still today in 2017 not given the credence and attention it deserves. For those of you who know me well, you will know that since my late teens I have never been “quite right” – never quite as energetic as the rest of you, always prone to infections, viruses and those inevitable two-day “blackout days” every six to eight weeks or so. Undiagnosed but not hidden was my myalgic encephalomyelitis – bubbling under, not violent and holy destructive like it is today, but present enough that for 25 years I was always waiting for the next virus or infection and the next day off because it would always come.

I became relatively adept at dealing with it. I never went out on a school night, attempted to sleep in late at every opportunity to make up for the constant feeling of tiredness and exhaustion (which I always put down to being a teacher) and didn’t participate in as full of a life as someone in their early 20s and 30s should. I kept the energy I had for teaching, a job I loved for most of the 23 years I was doing it. During those years in my 20s and 30s I tried loads of different therapies to treat what was hidden – what set me apart from everyone else. Juice fasts, whole food diets, no strawberries, no potatoes, colonic irrigation, exercise, no exercise…nothing ever changed for any extended period of time and the viruses and blackout days remained.

I would go back to those days in a heartbeat now. Even though I was compromised to a certain extent, I still had relative freedom compared to where I am now (despite being considered by those who knew me as someone who was always ill). There was respite between the viruses and blackout days, sometimes as much as eight weeks. Yes, there was tiredness, but everyone gets tired, right?

It’s where I am now that’s hard, and when I say hard I mean really, really hard, the kind of hard only a very few people know about. I’ve not adequately managed to coin a phrase as to what life is like now, but my partner, Steve, says that our lives are on hold. I guess I think of it as living a half life at best, and having no life at worst. And I want to live. I want to have a life. I don’t want to be here lying on the sofa day in and day out, conserving the energy I have to just go and pick my gorgeous Harry up from school. I want to go and be having adventures, the adventures I see everyone having on social media every weekend.

I don’t want to have to consider the aftermath of going beyond my body’s capabilities, of using more energy than my body can make. I don’t want my parents who are in their 80s to still be looking after me. I don’t want to have to ask for help because some days I physically cannot get up and am not safe enough to drive because of the vertigo. I don’t want to look in the mirror and see a gray face with dark circles under my eyes. I don’t want to see this changing body that is getting larger and larger because I am unable to exercise. I don’t want to have nights when the insomnia is so bad that I have to go downstairs and lie on the sofa so as not to wake Steve up.

I don’t want the vertigo that makes sitting up so painful, as the swelling in my neck and face is so intense. I don’t want the pain and tenderness in my joints that make moving painful. I don’t want days when I feel so ill I can’t get out of bed. I don’t want days and weeks when I can’t make it out of the house because I am too weak. I don’t want to have to keep going back to square one and building back up my physical activity. I don’t want to have to cancel arrangements with friends because I am not well enough to go. I don’t want to have to try to sell theater tickets I have booked because I am doing too poorly to go.

I don’t want to have to inject myself twice weekly with Vitamin B12. I don’t want to have to pay for a PCP to pay for prescriptions that don’t change things. I don’t want to wake up at 9:30 a.m. every day wondering if today will be a good day or a bad day. I don’t want to fall asleep during the day. I don’t want to have 25 kg bags of Epsom salts delivered every few weeks so my body can absorb magnesium trans-dermallly.

I don’t want to have the time to be able to sit and watch an entire season of some trashy American drama in a day. I don’t want to be alone from 7:40 a.m. – 5:10 p.m. every day of the week. I don’t want to feel my body shake as the energy starts to deplete. I don’t want to need assistance at an airport. I don’t want to be the owner of a blue disability badge or feel guilty about using it. I don’t want to empty the dishwasher and have to sit down immediately afterward. I don’t want to have to “pace” and think about what I can and can’t do.

I don’t want to feel dizzy. I don’t want my glands to be up. I don’t want to miss seeing Harry perform or take part in sports events. I don’t want to feel envy that other people can go and exercise and I can’t. I don’t want to sit in front of doctors who haven’t got a clue how to cure this. I don’t want chronic to be everyday. I don’t want to feel guilty that this is stopping Steve and Harry from doing things because they don’t want me to be alone on the weekend too. I don’t want to have to write this for M.E. Awareness Day to bring some more understanding about the impact of this condition. I just don’t want to feel so goddamn tired anymore.

I want to live with no restrictions. And most importantly, when you ask me those three innocuous little words as a courtesy to start a conversation, I want to say “Great!” and really mean it.

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Thinkstock photo via fizkes.