A morning with ME

I wake, I think. At this point it is hard to tell. I am lying on my front with my head pointed towards my bedside table. I try to lift my head to see the clock but I can’t. I fall back into semi-consciousness and doze for a while. It’s better than facing the pain.

I stir again. I still cannot lift my head, but my arm almost works. I reach for my phone. 9:20. I have had maybe five hours sleep. A good night. I notice the tweetdeck symbol. “5 messages about me.” I click to see them but consciousness deserts me and the phone falls out of my grasp.

10am. I wake with a start. My clock is beeping, its simulated sunrise glaring in my face. It did not wake me slowly, instead the beeping alarm hits my skull like a road drill and the sunrise light burns my eyes like being next to a real sun. My phone alarm joins in. Beep beep beep beep THUMP THUMP THUMP THUMP. I try to reach for the alarm and eventually hit the button. The phone is next, and I manage to swipe the unlock pattern on the fourth try. Then I attempt to turn over. Pain hits every part of me. Crushing weight bears down on me. I shove against the bed as hard as I can and drag myself on to my back, my legs following almost lifelessly. I gasp in pain and fall back on the bed.

Blank. Then wake. The sunrise lamp still burns me. I reach for it, managing eventually to hold the dimmer button until it goes dark.

Pain. I remain awake though, so I reach for my phone and load tweetdeck. I cannot speak, can barely move but the digital world responds to me. I can manage to type messages and feel connected to the world that way at least.

The cat wakes and walks over to me. She purrs loudly. I try to stroke her, my arm falling back to the bed. The cat is not happy. She headbutts my hand several times in an attempt to get more attention. Then, horror, she pushes me with a cold damp nose. I have no energy to wipe my hand. The cat leaves in disgust.

My wife comes in to the room to see if I am awake. She asks if I want coffee. I cannot answer, my words won’t form. I know what I want to say, but have no strength to say it. I answer, but too quietly. I try again. “Yes”, I manage to force out. As she leaves I remember my painkillers. I sit up, with huge effort. My legs still won’t follow. Packet. Pop out pills. They won’t go. I summon more effort. It hurts, but the tablets emerge from the packet. Glass of water. Am I holding it tightly enough? I manage not to drop it, and swallow my pills.

My wife comes back with my coffee but I have fallen back on the bed. A few minutes later I find the strength to pick up my phone and reconnect with the online world. I try to reach for the coffee but I can’t sit up enough to drink it. Eventually I manage to sit up enough, and even to adjust my pillow behind me. I drink the coffee.

I think about how a healthy person must view me, how lazy they would think I am. ME? Load of rubbish. Snap out of it and get a job you lazy bastard! I decide that I must write this narrative. Perhaps I can raise awareness of the reality of this crippling disease, change a few minds.

And so, I type this, my phone propped on my chest, my head barely lifted by my pillow. My legs scream at me in pain. My hands tingle with pins and needles, too much typing, held in one position too long. My wife brings me a coffee refill but I feel too sick to drink it. Time for unconsciousness again, I hope.

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

13 thoughts on “A morning with ME”

  1. Yep, that sounds like M.E. thankfully these days I don’t have days as bad as that very often, although I have also not yet made it out of bed today.

    It’s funny how saying things like ‘I’m having a bad day’ or ‘I’m really tired today’ sometimes don’t even start to cover how it is you feel, but it’s easier to say that and let people agree ‘yeah, I’m really tired today too’ than try and explain it.

    1. *Hugs*
      I’m worse today because of two train journeys in the last four days, although I’ve had a downturn in general for the last few weeks. Time to start a regimented timetable of rests again, I think.
      I’ve started to respond to the “I’m tired too” line by pointing out that I sometimes have so much fatigue that I can’t turn over in bed, or walk to the bathroom. They still don’t understand.

    1. I haven’t, but reading the link you provided, I see that a course of antibiotics is the treatment for Lyme Disease. I took antibiotics for a year to treat a staphylococcus aureus infection during my third year of illness so I think I can rule it out.

      1. It depends on which antibiotic you were taking. Many even broad spectrum antibiotics won’t touch the borrelia spirochaete. One problem that blood tests are not accurate (false negatives) and another is that not many GPs are ready to believe in chronic Lyme Disease. Getting more than a couple of weeks of a suitable antibiotic is very hard. May I suggest you join the EuroLyme http://health.groups.yahoo.com/group/EuroLyme and CFSFMLD http://health.groups.yahoo.com/group/CFSFMLD groups on Yahoo. The former especially has many useful documents and the members were especially kind and helpful to me a few years back. There are additional ME/CFS groups worth looking at as well. Good luck anyway.

  2. Hi, I agree with Sean above, After 6 years of ME my partner was treated with a concoction of different pulsed antibiotics for 2 years. I dread to think what his life would be like by now if he hadn’t. In fact I think he’d have given up on it altogether. Please consider educating yourself about Lyme, if it turns out not to be your problem (though difficult to prove it’s not, to be honest!), then you may well do other people a lot of good with your acquired knowledge.

    1. I will definitely read more on Lyme disease.

      I still think it won’t be my problem as I went and checked how long I was on antibiotics – I took several different types over a period of three years not one year. You are right in saying that it could help other people if I know this information though.

  3. Makes my hardships seem trifling. People completely underestimate the strength needed to live with these conditions. Good thoughts coming your way…

  4. *HUG* sorry to hear things are deterating again dude. and yes, somtimes people ill-informed stupid ass opinions are almost as bad as the desises it’self. I have a very visible disabilty and  still get people jumping to conclusions about me (one person claimed I didn’t need a stick to walk becuase they saw me take 2 steps without it, there’s a world of difference between two steps and walking all day)

  5. I had a really bad case of flu at Christmas it lasted about 8 wks but afterwards everything I did seem to tire me really badly.I had great difficulty getting up in the mornings when I look back however I had problems before energy would just drain out of me I had a physical job which I had to travel long distances to and sometimes I wonder how I got home at night I would be so tired sleep never refreshed me I had nausea headaches muscle pains cold hands and feet in fact so many symptoms but as I say since the bad flu I have simply no energy I can’t even walk the 50 yards to the postbox with out feeling exhausted for days afterwards Sometimes even a short talk to someone on the telephone would take hours to recover people say to me when I try to explain but you look so well I finally went to the Drs he said it was anxiety but apart from feeling as I did I had nothing to be anxious about Some one listened to my symptoms one day because I didn’t talk about it much she told me to ask the dr about M E and Cfs he immediately sent me for blood tests which I’m waiting for the results I have looked at sites on the net including yours they all describe what I’m going through there is much more I could say but writing this has been hard work thanks to you for your time if you’ve read this.. Mel

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