I lie here, afraid to return to sleep and its nightmares, anxious how I will feel when the alarm for my next dose of medication wakes me at 6am.
For the past several weeks, on yet another drug I am trialling, I have at least been able to function in the guise of a human being. Albeit one without the ability to walk properly without a stick, or drive, or get out of bed by noon, or have enough energy to eat food I have to chew.
Or without #pain, my new permanent companion.
Then two days ago I woke as my ‘normal’ self. The dark excruciating #illness that lurks behind an extremely thin veneer of medication, that only provides symptomatic relief, had returned. Extreme #pain over every square millimetre of my body, my skin on fire and so sensitive I could not move. My wife was there to assist me, thank god, but crying and yelling ‘don’t touch me!’ was not how I had envisaged starting the day.
Yesterday I had a #migraine around five in the afternoon and it stayed with me until six the next morning. Probably the worst one I have sufferred from and I have many, many to choose from. I was only able to finally rid myself of this black burning beast through several ice packs (lovingly delivered by my wife of course…I owe her everything), much moaning and groaning and writhing around and taking more painkillers than I should have. What has that done to my system?
In a few hours time, if I am lucky enough to sleep that long, how will I feel when I wake? It could be anything, and that is what I fear.
It is not enough that sleep comes sparingly, now I am too afraid to sleep at all. In my slumber I might miss the signs of another downward spiral, whereas if I remain #awake I can catch it in time and medicate accordingly, so the day that follows is not a disaster like the previous two.
I should be more factual. It has actually been the last two years that I have been afraid to sleep, since my illness began.
Never a good sleeper at the best of times, always waking #exhausted for many decades and now, for two years, with my companion, pain, as well.
Will tomorrow be a ‘good’ day, so I can walk a bit further than to the living room and back? Maybe even walk to the car so my wife can take me to our local coffee place a few hundred metres away?
As I write this my wife sleeps beside me. A heavy sleep, richly deserved. She is my carer, my cook, cleaner, waiter, medication reminder, advisor and watchful observer for my monthly GP appointments. In addition she works hard three days a week, a mostly manual job that leaves her with little energy to care for me. Her efforts are Herculean and she does it all with a loving smile and sense of humour.
I have lost count of the times she has told me I must not feel guilty, but I do. This illness has taken away any downtime she used to have. She says it doesn’t matter, that love gives her energy. I believe her as our mutual love for each other has always been without limit, and she knows I would do the same for her. But I do not know for certain, as she drew the short straw.
The #guilt remains, as I am only human. A human who is afraid to go to sleep for what the morrow might hold.
If I were to fall sleep again now, how will I feel when I wake?
Uncertainty is my new enemy. The past couple of weeks on a new medication made me hopeful that I can at least cope, as long as I stay within my limits (the main being no more than five hundred steps in a day). Then two days ago I woke to incredible pain, completely destroying the tiny amount of confidence I had built upon.
No more expectations of being able to exist within my carefully choreographed existence. No expectations at all, except for pain.
Pain and I have grown used to each other, our daily contest having become a mutual ritual, until recently. Suddenly pain has the upper hand and I have almost drowned in its unforgiving embrace.
Sometimes I wake with a migraine and full body pain. Those days my complete quota of energy is expended trying to convince my wife that I will be “normal’ again soon. Neither of us believe it but we hope, and smile to reassure each other that neither of us believes me.
Will it be a ‘good’ day? A day where the medication works as it should and provides me with enough #energy to walk a little further, read a few more pages of a book or, more importantly, make my wife smile and perhaps even laugh? Will we be able to talk of ‘when they find a cure’ without all the doubt and uncertainty that usually accompanies this subject?
Will I be able to wake up when I want to? That simple process I used to accomplish, besides my exhaustion, achieved because pain had not yet made me it’s guinea pig? Now I wake and have no control over staying awake. The best description is jet lag where your eyes sting and the effort of keeping them open is beyond you. Sometimes I wake at seven and think I feel good enough to stay awake, until I wake again an hour or so later wondering what happened. Did I dream or was it real? This question is becoming more difficult to answer each day. This waking then sleeping cycle repeats until I have the energy to get out of bed and stay out, lest sleep overpower me once again.
A ‘good’ day means I can control my body before noon. I can extricate myself from the determined tentacles of sleep and actually walk from my bedroom to the living room, book in one hand and walking stick in the other.
A shower? Yes I still find them to be a source of healing, the hot water soothing my body. I stay as long as I dare, or as long as I can cope with the pain as the water hits my painfully sensitive skin. The stool I sit on helps, and also reminds me that I used to enjoy this much more standing under the hot water, exhausted but pain free.
So what will today bring? My condition is so unpredictable and the #medication for the symptoms more hit and miss than providing definite relief. I can only hope that today I can have coffee with my superhuman wife whom I love without limit.
For better or worse. Yes, she did say that on our wedding day, but probably gave it as much thought as I did.
It always happens to someone else, not me, not us, and certainly not this illness that provides the same pain and discomfort as a terminally ill cancer patient. Without the luxury of a known cause and therefore no proven prescribed treatment, I worry about what this day will bring.
My main goal each day is to make my wife smile. That is the only comfort I can rely on that will temporarily reduce my pain. Right now she is the only (temporary) cure I have. That it lasts but minutes and yet takes the effort of a decathlete is not my concern. I would do anything for her.
Making this illness easier on my wife is, and always will be, my primary goal.
Now I must sleep, as my body needs enough rest to make up for the previous 30+ years that I kept pushing myself through, not knowing why I was always so exhausted or that I was making this condition worse.
Hindsight is a loathsome creature.
So I must sleep, #anxiety over what the day will bring must be ignored. The alternative is not sleeping at all, and from bitter experience that only makes the day worse.
Please wish me well, for as I approach my bed each night I may wake having unleashed a monster. Please, let tomorrow be without such pain and effort, may I be able to get out of bed in the morning to spend more time with my beautiful, angelic wife.
May tomorrow provide me with hope, and the nightmares remain in my dreams.
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2 thoughts on “An invisible illness never sleeps”
Hi Craig, Thanks for the Invisible Illness article. You have managed to “tease out” the many confounding & inexplicable things surrounding this crazy ME/CFS condition with its multiplicity of symptoms. With best wishes for a better future soon….hd. (PS haven’t read your other articles as yet, but will).
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Thanks again Hal. Please consider becoming a follower if you haven’t already done so!