(You may find the following distressing. It is written from my perspective 6 years ago).

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Heart pounding, mind swimming, drenched in sweat and struggling with every breath to fight back the waves of nausea coursing through me.   I want to reach into my chest and tear out my heart: the relentless 140bpm pace aches so much.

 

It’s 4pm and already it’s getting dark outside. After spending over 3 hours trying to eat my blended-up lunch – mush as I refer to it as – I am lying on my side exhausted. My tummy hurts; on top of the feelings of nausea, I feel bloated, full of trapped wind and I have the sharp pain of heartburn as well. The muscles in my abdomen have become so weak that now it feels that whenever I lie on my side everything inside of me collapses down.  This feels sickening.  My muscles feel terribly tight all over my body, with the sensation of pins and needles added in for good measure.  I am feeling very hot and the sweat continues to drip down my back.  All my instincts tell me to “sit up! Get up! Move! Change position and stretch!”, but I cannot.  I am trapped in a body that is so sick there is nothing I can do.

 

In just two hours’ time I will have to attempt to eat “dinner” or more correctly, “slop”.  It will not be pleasant.  I will have to raise my electric bed just high enough so that I can eat without choking, but no higher.  This will be torture.  Every mouthful will be torture.  My stomach will feel so full of gas but eating in this reclined position makes it very difficult to burp.  Again, I will desperately want to sit up to relieve this, but I can’t.  If I attempt to, with the aid of the electric bed, my head will start to swim, my heart will beat even faster, I will feel vertigo and it will become even more difficult to avoid being sick.  

 

As it is, each mouthful spoon-fed to me by my mother takes around 5 minutes before I can swallow it; even though it is blended up and should be almost like drinking a smoothie I just can’t do it.  I can only imagine the patience my mother must have to watch me chew on a mouthful that doesn’t need chewing.  But you have to understand that I can’t swallow it any faster.  If I do, If I force myself to swallow before I feel ready, I will be sick. Thus, every meal is like running the gauntlet, a struggle between trying to get as much food into myself as possible and avoiding the booby traps of being sick.  I have failed many times in this regard.  

 

There is nothing in my waking hours to look forward to. Eating, toileting and being given a flannel wash are my only occupations.  All the rest of the day I spend resting.  Nothing else exists.  Everything I do is horrible in its own way.  Anything that isn’t resting is exhausting and makes me feel hotter and more flustered, sweat more and generally increases the pain and nausea all over my body.  Resting is horrible because it is then that my own mind attacks me with terrible anxiety, making me miserable and spoiling any opportunity I have to ease my body through refreshing rest.

 

The only relief I ever have is in sleep.  Dreams are my only “entertainment” so I am glad that I have very vivid ones. But anxiety doesn’t respect sleep. There have been times recently when I have been so anxious that I couldn’t sleep.  It was in periods like this, when I haven’t slept for 3 nights and suffered so much more as a result, i.e., struggling to keep any food down, being in even more pain etc., that it felt difficult to understand how I was still alive.  

 

Yet, alive I still am.  Every moment is unimaginable.  And yet, it is right in from of me; I must accept it.

 

Bolted onto all of this is the deep sense of humiliation I feel.  I am naked, I cannot wash myself, feed myself, toilet by myself, or leave the bed of which my body is chained to by my illness. I also stink terribly.  The whole house is permeated with my stench, despite my mother’s daily attempts to wash me with a flannel.  However, the most humiliating part is how my illness is viewed by the general populace and even so-called “experts” in the field.  Chronic Fatigue Syndrome or CFS.  Many view it as a mental illness.  They may not say it directly but they certainly view it as such.  For my mother a few months ago to be told by a “professional” that the people who don’t get better from CFS are the people who “just don’t want to get better” is truly one of the most distressing things about my whole situation.  

 

Dear reader, this was my reality six years ago.  Writing this down has not been easy because in the past few years since I have been getting better, I have progressively blocked these memories from surfacing so as not to relive the terrible moments of my life.  It terrifies me as I remember the horrible hours, day after day that I spent in that situation.  No human being should ever be subjected to that level of torture.   It is degrading to the highest degree. 

 

 

The Present

 

All of the above is now a memory receding further and further into the distance.  I am writing now, sat up to my computer, listening to my favourite music (currently, George Michael).  Last night, I went to band practice for the pantomime I have somehow ended up playing the keyboard for.  Last week I came home from my first trip to New York.  I didn’t suffer from Post Exertional Malaise (PEM); I hardly even felt the jet lag!  I am also now working a 16-hour-a-week contract at my local convenience store, and successfully managing that without fearing a crash.  I am applying for full-time jobs in the field of data analysis.  I am confident that my body will be well enough to handle it.  

 

I owe my good health to the tireless efforts of my mother.  She took care of me 24/7 for years.  She fed and washed me.  She forewent sleep.  She was there to help with my anxiety.  

 

Through her research of what components my body was lacking in, and then making sure I ate the foods that were rich in these nutrients, as well the additional support of supplementing, she gave my body the ability to repair itself.  Without this, I would still be lying there.  Of this, I am certain. 

 

This same research can help you.  You are not in a hopeless situation.  

 

Choose hope.

 

Elliot.