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Bettina Goodwin Tony on a bad day Aug 2020 - A Day of Living with Autoimmune EncephalitisNovember 7, 2020 | By Bettina Goodwin, caregiver to her husband Tony

It’s morning and you open your eyes, groaning.

“How do you feel?” you’re asked, as you struggle to find the words to explain the fogginess and confusion — the sheer lack of comfort you feel in your body at that moment — but you move forward, ready to face another day.

It’s breakfast time so you eat what’s given to you, or you try your best to get down at least half, wishing you could taste it. That’s followed by a handful of pills that you swallow, hoping they control the multitude of symptoms that often overwhelm you. If the pills encounter a “bad day” you’re now accustomed to going back to bed, donning your headphones and sleeping, blocking out the world 

Today, though, is a good day. You arise and, once more, attempt to solve what you consider a “wretched” therapeutic crossword puzzle, slightly convinced someone must be laughing at you somewhere, because you’ve never used or heard of these words before in your long life. “Who’s ever heard of…?” You solve the challenge by looking up the answers using your cellphone. 

You’re stunned that a half-hour on this crossword exercise can leave you so utterly exhausted. Then you watch a TV show that is now unfollowable, despite that you’ve seen it so often before. But you laugh about this, and make a joke that hiding Easter Eggs this year will be easy. 

Then, you flick to another channel and watch it through closing lids. Tiredness envelopes you, your brain is foggy and fluctuating blood pressure now rising, so you could rip off someone’s head if they looked at you sideways. Dozing on the couch will help you recoup your good humor. While nodding off, you wish you could contribute to the household — even simple tasks would be good — but that might have to wait till tomorrow, as today you are far too fatigued. 

Life has slowed down, narrowed into symptoms and medical appointments, blood tests and infusions, which are neither remembered nor enjoyed. You’ve learned that this condition is a marathon rather than a sprint, with each day representing a journey toward health. 

Some days with autoimmune encephalitis are dismal and you hold on to the knowledge that tomorrow is a new day and you’ll be one step closer to the goal of beating this. Communicating with family and friends helps you feel a part of the world once more. You learn to accept celebrating a good morning, afternoon or day, and finding pleasure in these snatched moments when stars align and the fog lifts. 

Kindness is what keeps you going. The kindness of others, especially caregivers who respect your need to take things slowly and calmly. Family, friends and random strangers, who share a moment or assist you, smiling in acknowledgement.  

Kindness to yourself, allowing time to rest when your brain is tired, taking a step back from the daily hurley burley and focusing on something that calms you and allows a peaceful space. 

And laughter. Laughing at the hundredth time your coffee has been taken by martians, or the stairs moved while you were trying to best to climb them. Giving yourself permission to find your trials just a little funny, while allowing humor and kindness to assist your repair. 

You know that AE has its own timetable, but your life is more than this condition. It is the joy you find throughout the day and the loved ones you allow to be part of your journey.

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In light of National Family Caregivers Month (November), we’re spreading the word on the Rare Caregiver Respite Program offered by the National Organization for Rare Disorders (NORD). Read more here.

NORD 237x300 - A Day of Living with Autoimmune EncephalitisThis first-of-its-kind assistance program is designed for caregivers (parent, spouse, family member, or signicant other) of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands signicant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single use.

Your generous Donations allow IAES to continue our important work and save lives! 

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Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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Be a part of the solution by supporting IAES with a donation today.

 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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