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Why I Don't Want to Be Me Anymore

The Injustice of Life with Invisible Illnesses

Photo by Raw Pixel via Pexels

Day in and day out, I ache.

I am weak and constantly exhausted, yet each night when I lay down in my bed, sleep fails to come as I toss and turn, trying to ignore the pain, strange sensations, and numbness in my legs.

I can do nothing without becoming breathless, dizzy, and breaking out in fevered sweats and waves of agony...

Even a task as simple as folding a few towels now takes a 30-minute recovery time to regain my breath, recover some strength in my limbs, and for the pain to lessen to a more tolerable level.

Every single day I suffer of either painful and uncomfortable constipation or explosive diarrhea, along with agonizing stomach cramps, all of which means that I must spend hours at a time, either in the bathroom or at least close by, rushing back and forth.

I am tormented by my own thoughts, mentally plagued by my own inadequacies and inabilities, haunted by memories of the past...

From a harmless and innocent conversation that becomes twisted by my own mental demons to my greatest mistakes that are flaunted constantly at the fore of my mind.

They all torture me until I am desperate for reprieve from the mental anguish that they evoke, yet they must fight against doing the one thing that would end my pain because I know that it would hurt my children, passing this torment on to them.

I suffer uncontrolled epileptic seizures of varying types from uncontrolled and random jerking of a limb where a kettle or pan has been dropped, to moments of absence where my mind momentarily switches off and I stare blankly into space, no matter what I was in the midst of doing...

Drop seizures where I fall to the ground as though in a dead faint, to full-blown clonic tonic seizures where I fall to the floor, I jerk and twitch, and often lose control of my bowels or bladder.

Day after day I must stick meticulously to a routine of medication to stop lupus spreading to my internal organs, which could prove life-limiting or even fatal, to try to get my epilepsy under control and keep my mental health problems from spiraling to a crisis point once more.

I take pills for pain, pills for inflammation, pills for epilepsy, pills for lupus, pills to counteract the side effects of pills, pills to protect my digestive system from all the pills, and pills to replace the nutrients I lack from having these illnesses and taking all of these pills.

I have been forced to give up even the smallest amount of alcohol, to give up dairy foods, give up carbonated drinks, give up fatty or oily foods, and give up any types of artificial sweeteners and food additives.

I have been forced to limit my sugar intake, limit my gluten intake, limit my caffeine intake, limit my spice intake, and limit the types of vegetables and fruits that I eat.

In the past year I have had four MRI scans, five CT scans, six ECGs, eight ultrasound scans, 11 x-rays, and 26 blood tests.

I have been rushed into hospital due to my doctor suspecting that I was having a heart attack twice, due to suspected kidney failure once, and I have also been diagnosed with blind spots in my vision and an extreme photosensitive reaction.

On top of all of this, I now have electric shock sensations in my feet each and every time that I move my head, a symptom of demyelisation—which I am warned is often a sign of MS, and I'm awaiting another appointment with my neurologist for even more tests.

My point for sharing this tale of woe is not to gain sympathy, but to educate readers of the struggle that those of us with invisible illnesses live with day to day because despite all of these symptoms, tests performed by doctors and letters that prove and list my test results and illnesses, there are still people in my life that are adamant that I am faking my illnesses.

They say I do so for attention or sympathy... as though I would actually want the kind of attention one gets when one’s bladder or bowel lets go mid-seizure in the middle of a supermarket.

As though I want to be struggling financially, virtually housebound, alone 99 percent of my life, frustrated at all the things that I can no longer physically do, and constantly worrying about the effects my illness has on my children and partner.

Because I look okay, because I struggle on, because I try to keep my home clean, because I fight to keep what independence that I can, because I hate fuss and try to hide my pain for fear of being judged... I must be faking.

Yet those that judge are not around at three in the morning when I have a seizure in my sleep and my partner has to change our bedding and help me into the bath. They are not there when I have choked on my hair during a seizure and my partners accidental presence was the only reason that I survived...

They are not there to see my post-seizure exhaustion and confusion, or the resulting hours of vomiting—especially during a mental health crisis when my seizures come in clusters.

They were not there when the anti-epileptic medication sent me into a mental health crisis, made me suicidal, and pushed me into periods of psychosis that led me to being on mood-stabilizing drugs for the first time in almost 15 years.

Those that are not there to see all, are in no position to judge.

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