I’ve expended so much energy over the last 7 years trying to convey what this illness feels like, or pretending that I’m feeling fine when the truth was otherwise. It is unique to me though shared in its awfulness with many others. Its only constant is relentlessness, predictable only in its sheer unpredictability. Nigh on impossible to describe as it ebbs and flows, suffocating and confining me to a glass case of existence, but allow me the privilege of this effort:
From the onset the pattern of the illness has been that I have suffered an acute episode, or series of them, predicating a collapse in function and capability from which I have recovered slowly, reaching a plateau of health, only for that to relapse, followed by an acute episode…and repeat, several times since 2006.
Imagine you’ve just had a near car accident. Your body has responded to that threat by a sudden increase in heart rate and blood pressure. Your heart is hammering, you’re shaking and feeling scared.
Now imagine this happening when you’re perfectly calm and remaining in this state for hours on end, with your gut in spasm causing continuous burping ,your chest so tight you can’t breathe, tremors, spasms, high temperature, swirling head and your heart feeling like it’s going to explode. No apparent cause and no way of relieving other than to keep calm until it passes. Like an accelerator jammed to the floor when a car is in neutral. It is shocking and terrifying and I have to use every ounce of strength not to panic and make it worse.
There is an even more frightening variation: ventricular tachycardia where my heart feels like it’s stopping and starting, bumping and grinding, fighting against itself to get back into rhythm.
Or a sudden collapse in blood pressure or blood sugar leaving me faint, shaking and unable to stand.
I’ve heard this described as an amalgam of your worst hangover and the flu, after having run a marathon. It’s worse than that. It is not, emphatically not, about being tired. It is about being so ill that my body is incapable of handling normal stimuli. Everything hurts: light, sound, touch, eating, sitting up, standing, having company, sleeping (if I’m fortunate to sleep). My body is fragile, overwrought and depleted. It is a living death. For me, this state is short-lived though can return at any time. My heart aches for those who remain in this condition.
My experience is of various states that vary in intensity, duration and prevalence, involving a cocktail of symptoms, listed at the foot of this post. Progression isn’t linear: it’s chaotic like a fiendish maze; or a game of snakes and ladders where there are hidden snakes and dice; or an elaborate game of chess where you cannot see you opponent’s pieces or moves.
Omnipresent–headaches of every kind.
Weary–this is a variation on the collapsed state. I feel ill and exhausted, devoid of oomph, but can drag myself around and manage to do stuff. It’s like every cell of my body is fighting for breath. I try to perform a delicate balancing act, allowing me to live a little without doing myself any harm.
Wobbly Head– Nasim Marie Jafry described it in her wonderful novel , The State of Me, as your head shifting inside. I feel variously like I’ve just stepped off a ferry, or am on a rollercoaster: undulating, pulsating, having a sudden fall. All while sitting or lying still.
Wired-my body is hyper-vigilant, a sentry on 24 hour duty. Sleep is elusive, poor and unrestorative. Every cell of my body vibrates unpleasantly. If you want to know how this feels, go and get mortally drunk, stay up all night, go to work the next day and keep doing this for a week. Actually, please don’t do that, just imagine it!
Over-reactive–resembling an acute episode, on a sliding scale of misery and alarm, this causes me hellish trouble. I spent Christmas day lying flat because my body couldn’t tolerate being upright without shooting my heart rate into the stratosphere, my gut into spasm and my head swirling like a scene from the Exorcist. Currently, I can sit up and potter round the house a bit but even a short stroll is beyond me.
Painful–speaks for itself!
Weak–sometimes my neck cannot support the weight of my head.
Wonky Brain–aka cognitive impairment. Largely this involves taking longer to complete simple mental tasks. Or struggling to find words to complete…….
Emotional–I’m blessed in that I’m upbeat most of the time, grateful for what I have, and open to life and all its ordinary miracles. I do confess however that there are dark moments where the thought of dealing with this illness until I die is unbearable.
2011 was my zenith. With great care, I managed to do lots of stuff. Would I describe myself as having recovered for a period? No, it was just that my body was able to regulate itself better, I had more energy and fewer symptoms.
I experience this as an incremental decrease in function. It’s like energy leaking from a battery, the states increase in duration and intensity. I’m left with an excruciating sense of helplessness in the face of an inexorable slide towards collapse.
Not yet. I hope at some point to come back and fill this space with exciting tales of life in a recovered state where I’m brimming with energy, vitality and joie de vivre….
The last acute episode I had was in June 2013 from which recovery is proving a slow, frustrating process. I need to understand as much as I can in order to help myself break through the glass case and out fully into the world again.
List of symptoms:
Headaches, varying in location, sensation and intensity | Sensations in head of flips, pressure, swirling, shifting, dizziness, near syncope, vertigo | Tinnitus and sensitivity to noise | Visual disturbances; sensitivity to light, difficulty in focusing properly, pressure behind the eyes | Sinus pain, inflammation and infection | Muscle pain and weakness | Orthostatic intolerance | Tachycardia, ventricular tachycardia, ectopic beats, regular pounding palpitations | Oesophageal spasms and tightness; oesophageal reflux; IBS and diarrhoea | Chest pain, costochondritis, breathlessness, hyperventilation and wheezing | Hypoglycaemic incidents | Nausea | Exhaustion, fatigue, malaise, post-exertional malaise | Rigors, tremors, tics, spasms, restless legs | Pyrexia, temperature intolerance | Flu-like symptoms: temperature, sore throat, extreme malaise, headaches, aches in muscles and bones | Chilled extremities, clammy hands, hot and cold sweating, hot flushes | Intolerance of emotional stress | Anxiety | Insomnia, hypersomnia and unrestorative sleep | Wired but tired.