“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 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 short, I have multiple sclerosis.
In layman’s words: My brain is scarred. Literally.
My symptoms are extreme fatigue, excruciating trigeminal neuralgia, stabbing eye and ear 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, for example, feel dizzy, stiff or in pain after sitting or lying down for too long, your body is telling you to do something about it. Maybe you stood up too fast when your head is spinning, or perhaps exercise like walking or swimming might help with pain or stiffness. If you do have genuine symptoms that didn’t start after you spent hours on Google trying to self-diagnose yourself, there are real, tangible experts called doctors, physicians or GPs that will give you a real diagnosis.
Do I sound exasperated?
That’s because I am.
Sadly, some people refuse to accept the reality for as long as they can if it contains negative thoughts or events. It’s as easy as common sense, though.
The human body is master at interpreting and telling you it is one big piece of machinery that regulates itself as we speak. Most importantly, it uses common sense to get you back to your fit and healthy self because your brain can make perfect sense of what the rest of your body is telling you.
Just take the facial pain I have been experiencing the last four days. Trigeminal neuralgia (TN) is an unbearable nerve pain which stabs or burns on one side of the face. The pain comes on rapidly and, at least initially, lasts for seconds or a few minutes, and can recurring blasts can go on for what seems like forever. Anything between 5 and 50 episodes can occur in a day. This type of TN can change into the second type of TN where the electric shock-type pain can change into a dull, hot, nagging pain that can last for days.
On any given day, either pain, talking, smiling, brushing my teeth, a whiff of cold air, touching my face, temperatures or vibration can trigger a TN 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 – the 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 because of it, I am under constant 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. 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 this when the only thing you need is your duvet?
My TN-days consist of the bedroom, blinds, curtains closed and fairy lights on to create a soft glow of light behind me so they don’t shine in my eyes. The TV would be playing with muted sound and I would watch something to captivate my mind like history documentaries so I can move my mind from my face to the TV.
And after each bout, I go back to the thing that set off the pain and try to see it in a different light so I can deal with it when the next few TN-days arrive.
So yes, this is an MS-rant. One that was long overdue.
People are allowed to feel what they feel, and they can imagine having ten different illnesses if they like. If they genuinely want proper treatment, there are many professionals who will help. If they want to self-diagnose themselves instead, it’s still 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 persistent, untreated learned helplessness or illness anxiety disorder is again brought up while I am – at that 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.
Allow me to be selfish for once.
I may look OK, but inside of me, is a brain that is trying to misbehave as best as it can. And I need to be there when it happens.
So, rant over.
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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.