Chronic Fatigue Syndrome – The Longest Rainy Day

16 May
“CFS has been classed by the World Health Organisation as a Neurological Disorder since 1982.”

Thirty years on, and it seems to me that no one is any closer to understanding this illness than they ever were. There are still nurses and doctors who don’t know the symptoms, treatments, or will simply call you a hypochondriac. This is NOT all just in my head; I know my mind and body inside and out; unfortunately, I just cannot rely on my body; trust it, like you can yours.

Chronic Fatigue’ really just isn’t a good enough name. So many people hear Chronic Fatigue and enthusiastically say, “I get tired, I have that, too!”
It’s like calling cancer ‘hair falling out’, or referring to a missing limb as ‘something might be wrong with that leg’.

This is still an undeveloped area of medicine, but I have hope that one day, science will triumph, and sufferers will have answers, perhaps even a cure.

Here is what I say to you, the unknowing stranger.
Your worst day, is my BEST day.

♥  ♥  ♥  ♥  ♥  ♥ 

I barely even remember, or am able to pinpoint a specific date that CFS ‘hit’ me. I know that all three of us girls, myself and my two older sisters, got very sick at the same time. We all had blood tests, but Kylie’s was the only one that showed a positive result for Glandular Fever. The doctors say that if you test at the wrong time, you can miss it, so I guess I will never know what happened.
Sam and I recovered, but Kylie never did. I went back to school just in time for year seven camp, Sam went back to work, and Kylie stayed in bed. She saw a lot of doctors. I remember she was diagnosed with CFS. I tried to understand it, but Kylie was a pretty angry teenager and didn’t talk to me unless it was a scream of rage and profanities.

Mum was under a lot of pressure to keep up at work and not miss too many days, while taking care of Kylie and taking her to her appointments.
It was nearly two years later that Kylie came home to stay with us; she’d moved out in that time. She had a terrible virus and was bed ridden for weeks.

She also gave it to me.

Suddenly I couldn’t get out of bed either, I was locked in a cage of fog. Mum would wake me to try to get me to drink water. If I rolled over and woke up, I’ll apply moisturiser to my lips to try to lessen the bleeding cracks. I honestly don’t know how long I was in my bedroom for, I could remember Mum sitting on the end of my bed at home and crying when she thought I was asleep, I don’t remember going to the hospital, I just remember being in the children’s ward, in a private room, and knowing time had passed. No transition. Suddenly Mum came in after work and I could sleep the day away, mostly undisturbed, apart from the obs nurses and the nurses replacing the emptied IV bags.

Blood tests showed I had Glandular Fever.

I know I was there for weeks, I know I watched the whole Hopman Cup series. I know I couldn’t walk to the nurses station and back. I was released the day I managed to walk the length of the corridor of the children’s ward.

                pa·tient  
                     adj. persistent, constant, unwearied in the face of
                           difficulties and hindrances.
                     subone who endures pain and suffers. 

So I came home, expecting things to return to normal. I tried to go back to school- but I couldn’t make it through two classes without going completely white, a talent for someone as naturally pale as me. Mum would pick me up from school, drop me at home and go back to work. I would fall over when I stood or sat up. I hated being a burden, a ‘sick’ child.

We began to see The Doctors. Many of them. Tests here, new medications there; never a break.

Brain scans, whole body scans, colonoscopies, endoscopies, small bowel MRIs, MRIs of my brain, CT scans of my brain.
Countless ultrasounds to try to find the source of the pain.
Internal ultrasounds, give by a long penis shaped tool covered with a condom.
Tubes up my nose, tubes in my privates, countless tubes spewing from the failing veins in my arms.
Three to four hour long sessions in Clinipath with nothing but Oprah and last year’s fashion magazines to keep me company, while liquid the colour of Betadine makes its way into my veins.
Adrenaline shots, for the allergic reaction that is guaranteed to follow. Scratching the itchy rash that it didn’t take away on my hairbrush- its on my arm and I can’t move it much with all the tubes.
Tests on my heart, injecting dyes and young doctors examining the position of the scanner while all I can think about is how exposed I feel.
Walking on treadmills and breathing into huge mouthpieces surely made for giants, and then trying to fall asleep in that getup.
Tests on my brain activity and functions, during the day and overnight, sometimes at home, sometimes in clinics or hospitals.
Tests involving cutting off a quarter of the hair on my head. Exploratory surgeries, with normal results.
Blood pressure monitors, a nice weight to carry around with a trendy fanny pack attached to track the readings.
Tablets in shiny new boxes and bottles, ‘Prescription Use Only’. Drug diets.
Potions brewed with God knows what, presented to me with a huge smile, “I had to work really hard, but I managed to get you on the trial for this!
That’s fine Doc, if you don’t have to taste it.
Night sweats became the norm; having two or three full sets of bedding was the only was I could guarantee I would get through the night.

 keep fighting, gotta keep fighting 

”Yes, I sweat in my sleep, too. It’s gross.” You may say.
It’s not gross. It’s exhausting. Having to get up in the middle of the night because you’ve woken up completely wet and have to strip the whole bed- even the mattress protector. If it wasn’t for the ‘accident’ sheet underneath that, I don’t imagine my mattresses would survive long either.
My clothes weigh at least twice as much as normal. The pillows are wet on both sides, and I’m shivering from the cold.
Goosebumps pop up instantly and my palms begin to burn.
I run to the shower and crank on the hot water tap, shredding my clothes as quickly as I can. Dropping them into the laundry basket and stepping into the steaming spray helps the skin that the water is directly touching, but not my legs; they are blue.
I rinse my already wet hair, wash my face and body quickly, and get out to find yet another full set of clothes to wear.
With a dry towel over my fresh pillow to protect it from my damp hair, I get back into bed and try to fall back asleep.

This has been my routine for the passed nine and a half years.

The debilitating pain. It began in my bowel, and over time has spread to most of my body.
Yet it is still the worst in the bowel. This is where I feel nausea, cramps and a knife stabbing into me all in one.
I used to cry my eyes out when I was home alone. I have spent hours of my day on the toilet, bend over, sometimes with a pillow to hunch over if I’m too exhausted to hold my body upright any longer.
These days, not much has changed. I am usually strong enough to hold myself up, and I also try to hold off from going to the toilet for half an hour at a time.

My legs ache and burn all at once. I feel like I need to shake them, but this doesn’t relieve the pain, only temporarily distracts me and tires my limbs more, and brings a slight, comforting pain of having exercised. Being very warm seems to help a little, so I will often have a hot shower and dress in many layers. This pain tends to come in the evenings, and have been known to keep me awake all night, sobbing. Sometimes I have a day or two without it coming, but it always returns. I cannot find a link with the pain and anything in my diet or lifestyle, only that it is worse when I am tired; life being cruel again, the pain robbing you of the precious sleep you crave.

Headaches, soul wrenching coughs that seem to come all the way from your toes and leave you gasping for oxygen, almost constant nausea. The intense cold, on a hot 35 degree day. The anxiety, cyclic vomiting and ensuing panic attacks, followed by psych consults.
Again, no one understands.
The frustration from people; friends or acquaintances, when you have to cancel plans again; you cannot eat anything on the menu without getting very ill, or have to stop, either to catch your breath or your blood pressure.
Listening to your heart beating all over the place, feeling twinges of pain in your chest and waiting for any other symptoms that might signal that it’s more serious, this time.
The random muscle twitches, especially around your eyes.
The cysts that just keep growing, you just have to keep watching and waiting and hoping they don’t get any bigger, or leak.
I still feel guilty because I can’t get up and out of bed to do normal, everyday tasks.
Going anywhere is an ordeal, doing anything is a battle. I have to psych myself up to go to the chemist to get my meds. Sometimes I can only do one chore a day; I have to chose between laundry, dishes, shopping or cooking a nutritional dinner.
People don’t understand my frustration and emotional reactions when I end up having to give more of myself that I had expected, prepared myself for. But if you had been awake for 3 days, I’m sure you would react the same way; and that’s how my body feels.

This is what CFS is for me.

There were the comments of how lazy I was, so often that I began to believe them;

There was Denial; Realization. Life has changed, and the old me has died and passed on to an uncertain future.

I had to relearn my entire body- my boundaries, my daily battles. I had to relearn the inside of my own head.

Understanding those thoughts and feelings, and trying to turn them into something positive. Because now they are different- I am different.

In a dark time, the eye begins to see.
                                           -Theodore Roethke
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