The Reality of Pandemic Living When You Are Immunocompromised
You are your own worst enemy.
A contradiction.
A cognitive dissonance.
You know you can pick up a needle lying on the table, yet your fingers refuse.
You know your eyesight serves you well with the use of contact lenses and glasses, yet it doesn’t capture light and shapes as well as it should.
You know you can wiggle around the house in high heels without doing a Miss Congeniality dive, yet your balance goes from hero to zero when a neurologist asks you to walk heel to toe.
You know you can talk about anything with anyone, yet your usual quick-witted mindset stops being a waterfall of possible strategies on how to live life to the fullest, yet it is only 10 a.m. and you already need a nap.
Despite your inner strengths, your body has, without your approval, adapted to a slower way of life.
Yes, you are a problem.
A liability. To yourself. To your family. To friends.
And in this day and age of pandemics, you have become a liability to the world around you.
You have multiple sclerosis (MS), a chronic, unpredictable, immune-mediated, neurodegenerative illness that is yet without a cure.
Just let that sink in for a moment, please.
Keep the words “without a cure” as well as “neurodegeneration” at the forefront of your inner dialogue, please.
You can store “unpredictable” in the same top drawer of your inner dialogue.
I began writing this article weeks ago. Because of a multiple sclerosis relapse, I am only averaging a paragraph a day. Being too much of a perfectionist, only two sentences remain after each edit.
In between takes, the other good eye gleams on the CDC website, the Washington Post, the New York Times, Politico and a few other quality news outlets to get my daily feed of coronavirus (COVID-19) updates. I hang onto world-renowned immunologist Anthony Fauci’s every word, for he seems the oracle the world’s most impacted countries should revere. Without Fauci, if I allow myself to dig deeper into a story, I dig myself deeper into despair.
By now, the 7.8 billion global community has met a similar match in a coronavirus that like MS, is equally without a cure. It equally attacks people without warning, and without logic.
In MS — remember: chronic, unpredictable, neurodegenerative, without a cure — there are now a plethora of medicines that try to slow down its disease progress. It comes with a warning though. If you do not stick to your disease-modifying treatment (DMT) and changed lifestyle schedule, you will give degeneration an entry to attack your immune system by stupid behaviors, or, make what was already unpredictable, a hell of a future spent cursing yourself.
I’ve been there, done that, and still regret thinking I knew better than my neurologist.
Yet, even without any stupidity of your good self, MS’s course will be faster and more severe than that of others; unpredictable doesn’t even begin to describe it. And unless you have brilliant scientific minds like Anthony Fauci, a cure will not quite happen during your lifetime. After all, multiple sclerosis will stay with you until your last day on the hallowed peanut we all trod on, and a peanut that now seems too toxic an environment even for the best, healthiest and toughest among us.
Just let that sink in as well.
Little did I know that life with MS could get even worse. It can take you down a rabbit hole without an emergency exit. If you do happen to find one, you might find that dragging yourself 25 steps upwards in a wheelchair doesn’t really work because your wheelchair is too wide and not fit for that purpose.
Of all the illnesses that crossed my life the past few decades, only multiple sclerosis continues to add so much irony, sarcasm and idiocy to my daily life, it almost becomes laughable.
It is until it isn’t.
I can give you a list.
You are under the supervision of specialists and professors across different medical branches like neurology, ophthalmology, physiotherapy and speech therapy to name just a few, yet the symptoms they treat are quite often keeping you from physically attending your appointments with them.
This reminds me of the fact that two years ago, one of my articles was shortlisted for the Blog Post of the Year in the Ireland Blog Awards competition. After initially agreeing to attend the award ceremony, I had to pull out despite being asked by its organizers to please be present.
The reason for canceling?
The very illness that made me win the Blog Post of the Year Award. Oh, the irony!
Other issues as eventful. A hospital-acquired superbug. Half dead in hospital. “Avoiding bacterial infections are not just a must, but a need,” I was told. In the meantime, keep taking 30(ish) tablets, a daily injection, vitamins, physio, light exercise and rest, most of all, rest!
Oh, the sarcasm of the coronavirus outbreak. “Don’t forget, you need to be very wary of viruses also.”
No shit.
More Dettol or Lysol here.
Dettol or Lysol there. Dettol and Lysol everywhere.
Let’s just say that I have this COVID-19 thing down to a tee.
Twelve years’ experience in trying not to catch any bacterial or viral infections. I so have this corona-thing down to a tee. After all, remember: MS is unpredictable, immune-mediated, without a cure. I wouldn’t be one bit surprised so should I be diagnosed with COVID-19.
So, here’s why I am rather annoyed with the world today.
While restrictions in Europe, the USA and the far east are being relaxed, I have this to say.
Governments, do you really, honestly believe that because everyone behaved well during the lockdown, they will keep on behaving that way once you loosen restrictions? Did you really, now? If you are that ignorant, wow. Just wow.
Even when you will open that door just a few centimeters, people will not just take an arm, but they will rip your whole body to shreds, zombie-style. After all, many believe they need to let loose of the illness that had dared them into experiencing “an unbearable life.”
Some may shout, “Good work, guys, we flattened the whatever so we can throw away the facial masks! Yeah, baby, we’re talking without a mask again so let’s have a party! We will party like it was 1999 and we will forget there was ever such a thing as social distancing!”
What a bunch of malarkey.
Downright insanity, and selfishness
People with chronic, neurodegenerative illnesses, or those fighting cancer or other severe diseases in the meantime, will say this, “Great. Just Great. You just flattened the whatever and go behave like animals as if you had been kept in eternal captivity. Do you realize however that from now on, you hold the fate of people with immune deficiencies and chronic, incurable illnesses in your hands? You may have come out of lockdown and full of quarantine fatigue, but ours will remain until we’re physically terminated, expired.”
In short, while you refuse to wear facial masks, observe social distancing, and do as your momma told you how to wash your hands, we — the immune-deficient of this world, are being used as biological warfare targets.
Indeed, no stringent governmental and medical measures will ever be enough as long as people do not give a damn about others once they are given an inch on how to break free from what they perceive as “police state tactics.”
I am not speaking from a place of hate or ill will, nor am I a drama queen. It is understanding human behavior both from morality and from an evolutionary psychology standpoint. At its core, is survival selfish? Will it always make us think selfishly first, rather than selflessly in fight or flight events?
A prime example is what is happening all over Europe and the U.S. Cities relaxed their COVID-19 restrictions, and the first thing they do is running to beaches as if to welcome D-Day soldiers. However, they wore no masks, didn’t apply social distancing.
You can ask yourself how altruistic you are when it comes to it. Did people throw away their masks because they were sick and tired of them? Or do those who still wear them do so from a standpoint of knowing that you are protecting others from yourself, instead of you protecting yourself from them. It is but a tiny line in the sand, but it will have grave consequences, and this has already shown that restrictions being lifted have to lead to an increase in new coronavirus infections.
As long as there is no vaccine, contamination will be everywhere whether it will be in the form of reinfection or reactivation.
Since March 26th, I’ve left the house just five times — aside from leaving the garbage on the pavement on my driveway to be picked up by the recycling company. Remember: chronic, unpredictable, immune-mediated, neurodegenerative, without a cure, do not catch bacterial or viral infections.
That is how much I fear a completely free opening up of the world. Evolutionary psychology tells us that no, you will not adhere to outlined, strict warnings and measures; as soon as you see others not giving a hoot anymore, you will all too gladly join the pack. In the meantime, people with serious, life-threatening illnesses will continue to remind you of your inability to grant us a life well-lived as well.
Hell, we have been begging you for months.
Your lockdown was just temporary.
Ours has only just begun.
And will never end.
Getty image by abc17
I am Willeke-Maya, a quirky, tenacious and neurologically compromised female expat living in Ireland since 2002. Two and a half years after emigrating, I was diagnosed with MS and trigeminal neuralgia. Both seemed awkward, puzzling and easier said than done at first. Any illness is unwelcome, and life often feels and sounds like a war zone, especially when excruciating facial pain (trigeminal neuralgia) joins the sound of screaming children, banging doors and sudden loud noise into auditory hell (hyperacusis) and fatigue that belongs in the narcolepsy category of life. Elsewhere, neuropathic pain, vertigo, ataxia and prospective memory issues are just a few of the other symptoms that occupy my day. Despite having accepted my illness and all that it brings, MS is the type of illness that carries this tagline, "The illness is mine, but the tragedy theirs,” when asked how loved ones feel about your condition. Buzzwords like the above don’t calm down overactive minds. But, life goes on. Fifteen years with a progressive, neurodegenerative illness beg you to keep your chin up, for there is no other way to go through life. I hope you will find some solace in what I write and do feel free to comment or send a private message in the Contact page. I began my blog 'Ireland, Multiple Sclerosis & Me' (IMSM) in a bid to convey optimism through writing. It turned into an award-winning blog that recounts my journey on becoming normal when life with MS is a beautiful mess. By sharing thoughts, hopes and fears, it turned into a mix of personal stories and info about MS. My goal is to connect with people who like me, found themselves in front of MS's door, and were dragged in for an extended stay in one of its uncomfortable, dark-lit backrooms. Hopefully, we will connect somehow to share its burden and be an inspiration to each other. After all, IMSM was created to do just that: trying to make sense of MS nonsense. Now 17 years in Ireland, I remain fiercely independent as always, I hope to help change people’s perception of invisible illnesses like MS. AWARDS 2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland ◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019 ◾ Ireland Blog Awards: Finalist 2014, 2015, 2017 ◾ MyTherapy: Best MS Blog for Simplicity 2018 ◾ Everyday Health: Top 10 MS Blog of 2018 ◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019 Contributor to: ◾ Novartis MS blog Living Like You ◾ Teva’s MS blog Life Effects ◾ MS Ireland’s blog MS & Me ◾ The Mighty ◾ Guest contributor to MyTherapy
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