“Oh no, what does that mean?!”
“Give me a break, please. Stop being so self-aware of every little nook and cranny in your body. Stop assigning it symptoms that are self-diagnosed. Stop wanting to be sick.”
“You want to feel pain? How about I lend you some trigeminal neuralgia laced with extra brain fog and energy levels that reach -50 at least.”
This is a five-second rant.
I am annoyed.
Annoyed at those who are as fit as a fiddle yet pretend to be sicker than some with serious disabilities. Envious because I wished I was still in good shape, half my size, running over hills and hanging of rock formations somewhere in the middle of Ireland. The only hills I now scale is the escalator in my local shopping centre and the staircase in my house.
In medical terms, I have multiple sclerosis.
In layman’s words: My brain is scarred. Literally.
Symptoms are extreme fatigue, trigeminal neuralgia, eye pain, dizziness, wobbly legs and paresthesia in my arms and legs aside from other, less desirable symptoms I want to think of. They make common sense if you have MS.
If you – as a healthy subject – feel dizzy when standing up, feel stiff or just tired, try making common sense of what your body is telling you. You stood up too fast, you should exercise more, and you should perhaps sleep a tad more also. Your body told you it’s one big piece of machinery that regulates itself as we speak and is using common sense to get you back to your usual, fit and healthy self.
Just take the facial pain I have been experiencing the last four days. Trigeminal neuralgia (TN) is an excruciating nerve pain which can give stabbing or burning sensations on one side of the face. The pain comes on rapidly and, at least initially, lasts for seconds or a few minutes. Anything between 5 and 50 episodes can occur in a day. In MS, the electric shock-type pain can change into a dull, nagging pain that can last for days.
On any given day, pain, touch, temperatures or vibration can trigger a TN attack. Talking, smiling, brushing my teeth or a whiff of cold air can trigger an attack. Vibrations caused by walking or music as well as sudden loud sounds like banging doors, coughing or sneezing… same. Quite often, waking up with the left side of my face resting on the pillow is the culprit. There are so many triggers that listing them all would scare people.
In technical terms, there is ‘cross talk’ between nerve fibres that carry sensations such as touch and vibration to the brain and those that carry sharp pain. In MS, this cross talk is caused by loss of myelin – fatty substance that covers nerve fibres – on the trigeminal nerve. The damaged nerves react to touch sensations and send incorrect pain signals to the brain.
It’s a handful, indeed.
And under chemical warfare trying to end the pain.
I would gladly change lives with someone who is fit, healthy and able to do things people with chronic, invisible illnesses can’t.
Like I wrote a while back:
“When physical restraints curb your potential, you realise that you want so more from your life, and out of your reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.
It merely reminds you that being chronically ill sucks. It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for manoeuvring when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.”
Let me just make it easy to understand. No, there is no end to life with a chronic illness. Chronic is chronic, and that is simply the unfortunate truth. There will be more doctors, more medicines, more hospital waiting rooms and more shattered hopes for a cure within my lifetime. Nobody will be able to take that illness away, or replace that hope for reality.
So, how do you get through days like today when you need a duvet day more than people who love nagging about themselves?
(Preferably I would start with Ben & Jerry’s ice cream if I had any).
My TN days consist of the bedroom, duvet, blinds and curtains closed and fairy lights on to create a soft glow of light. The TV would be on, muted sound, and something to captivate my mind like history documentaries etc.
After a while, I go back to the thing that upset me and try to see it in a different light.
People are allowed to feel what they feel, and imagine what they like. It is none of my business as I am not the master of their mind. It becomes my business however when I am talking with someone whose hypochondria is again brought up during our conversation while I am – at this very moment – having a four-day trigeminal attack and in desperate need of sleep.
In short, I do not have the energy or the frame of mind (and body) to invite the psychotherapist in me for an hour-long session. I have to empower myself first before I can address distressing situations of any kind.
I may look OK, but inside of me, is a brain that is trying to misbehave as best as it can.
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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.