TOUCHED BY LYME: How iphones can mess with your head
Guest blogger Jennifer Crystal found “whooshing and zooming” of iOS7 a challenge to navigate.
Yesterday my Facebook status read, “In a stunning win for neurologically impaired iphone users everywhere, the latest update gets rid of the whooshing and zooming feature! BEST. UPDATE. EVER.”
While this announcement may have seemed melodramatic to some, I’m confident that late-stage Lymies and other patients with various neurological ailments were equally appreciative that the update to iOS 7.0.3 meant a downgrade from the vertigo, dizziness, nausea and brain fog we’d all been experiencing for the last couple months.
Unbeknownst to users before upgrading, iOS7’s design included apps that “fall in,” creating a flying effect each time a user switched screens. For most users, this feature was simply a cool step for technology that is increasingly fast and animated. For all of the people who complained to Apple that their new phones were making them sick—no doubt many of them Lymies—the feature forced us to face flashing animation that we otherwise work hard to avoid.
Like many setbacks, however, this one ultimately resulted in two steps forward: Apple provided a solution, and, perhaps more importantly, the forum through which users complained allowed patients to give voice to symptoms that are often invisible. Physical symptoms of fever, joint aches and fatigue can be hard to explain to people who say, “But you look great.” Bridging the gap between what’s happening on the inside and what presents on the outside is even harder when it comes to the neurological symptoms of tick-borne disease.
When I was first diagnosed with Lyme and co-infections, I didn’t even know they could manifest neurologically; I find the same is true for many people who have a basic working knowledge of straightforward cases of Lyme (bull’s eye rash, early diagnosis and treatment). The scariest aspect of these diseases—and the one that needs the biggest awareness campaign—is what can happen when TBDs aren’t treated quickly or effectively, when they reproduce and spread and ultimately cross the blood-brain barrier.
“The what?” classmates in my creative writing class asked when I recently mentioned what had happened when my own infections crossed that barrier. They were both fascinated and horrified to learn that the blood-brain barrier is meant to protect the brain from bacterial infections, and that once Lyme disease crosses it, the infection becomes virtually impossible to cure. The key is to catch and treat tick-borne diseases before they have the opportunity to invade the central nervous system; once they do, the bacteria and parasites burrow deeper and deeper, hiding from (and necessitating) intense treatment.
Neurological Lyme disease can manifest in different ways. At the most extreme, it can cause paralysis, seizures or schizophrenia. I was personally plagued with insomnia, hallucinogenic nightmares, brain fog, word and song iteration, a burning sensation in my extremities, and hypersensitivity to sound and motion. All of these symptoms were the result of a nervous system gone haywire, and they made doing “normal” sick things impossible.
Friends would ask if I had watched any good movies, or read any books. Just reading one paragraph of a tabloid magazine made my brain feel so full that I thought my head might burst. I’d try to look at pictures of George Clooney vacationing on his yacht, but even those images were too vivid for my aching head.
Before long the buzzing line of a migraine would creep over my left eye, across my sinuses, along the back of my neck, covering that whole hemisphere of my head in such a way that I wished I could slice it off and put it on the nightstand. Movies and TV were out of the question. The flashing pictures on the screen felt like an assault on my brain, increasing the running songs and racing thoughts and mixed up images that I couldn’t process.
Now that I am in remission, these symptoms have mercifully abated. Gone are the days when I couldn’t even read a magazine; now I can read books (and many of them, for school!), write papers, send emails, and even go to the movies. I just have to do those things within my new limitations, which means listening to my body and brain and backing off when something is too much for me.
In addition to pacing my physical exertion, taking naps, and getting adequate sleep, I’m also careful not to read too much at once, to monitor how long I spend on the computer, and to look down during particularly intense TV scenes. I step out of movie theaters during previews, which are especially loud and fast-paced. And I stay away from flashing, zooming screens.
This last one became impossible with the new iphone software; I found myself closing my eyes every time I turned on my phone, or tried to make a call. But now, thanks to the latest update, I can open my eyes when I send a text. I can continue to try to open others’ eyes about the neurological dangers of mis-or-untreated tick-borne illnesses. And I can do it all with a calmer, happier brain.
Now that’s an update worth liking.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
Thanks for making us aware of the small things that can have a big impact on those with neurological disorders.
This is such an informative, clever piece! Jennifer Crystal continues to find ways to make Lyme disease understandable through her insightfulness, creativity, honesty and sense of humor. Keep these blogs coming!
Jennifer’s description of the lesser neurological symptoms hit me not just close to home, but exactly as if it were me. Out of all the symptoms that I have from Lyme (including major fatigue & joint pain), the neuro symptoms are the worst and most frightening. It feels comforting to know that I’m not alone with sensitivity to music/sound, and song iteration! With Lyme, it’s hard to describe how much worse song iteration is, than the typical “earworm” that healthy people sometimes experience. With Lyme, the song iteration never stops or lets up, and often keeps you awake at night along with the typical insomnia, restless legs and muscle tremors. Thank you for this.
Here is a link to my disclosure story: http://www.wilddingo.com/2013/10/15/the-enemy/
My daughter has late stage neurological Lyme Disease with multiple co-infections.
She had been experiencing 12 migraines per month. Then suddenly these increased to 24 per month with accompanying vertigo, nausea, blurry vision, tinnitis and heart palpitations. A year later we heard about “smart meters”. These new electric meters are being put on residences without the owners permission or knowledge.
Now instead of a meter reader coming to your home monthly, this smart meter
sends out a signal every 30 seconds about electrical use in your home. All of
your homes electrics are pulsing this information through the wires in your walls so your entire house is now full of dirty electricity. We looked into this and found out that to the day her increase in symptoms coincided with the installation of the smart meter.
Our electric company on their website say that there are no health concerns with these smart meters. My daughter now sleeps in a tent in the living room which is the room farthest from the wall with the smart meter. On the other side of our house we are close to our neighbors smartmeter. We bought a device to measure electromagnetism and the readings are extremely high.
Anyone with Lyme who has noticed an increase in their symptoms should check to see if one of these meters has been attached to their home. Many European countries have banned these but here in the U.S. they are installing them.
They say they save electricity but they do not.
These smart meters collect information about you which is a violation of your privacy. They are a health risk to persons who are already ill and sensitive to them. There is an unknown health risk to longterm exposure for the rest of the population. They never stop….every 30 seconds a signal is sent. Some houses “piggyback” which means they pick up the signal from other houses on the block and then transmit from your house making your exposure greater than a neighbors. They are also a major fire risk. Houses are burning down with these devices. Especially houses with older wiring that cannot cope with the constant
pulsing from this meter. How many houses need to burn to the ground.
How many families have to sleep outside of their bedrooms to minimize their
exposure? I know this article is about iphones but if you have a problem with iphones then you most definitely will have a problem with “smart meters”.
My A/C repairman told me that many of his customers have migraines and are
rescheduling their appointments due to illness. He said this has been in the last 2 years which coincides with their introduction to our community. No one is
connecting the dots here. I have yet to see major media cover this story.
So please if you are reading this and if you have Lyme disease see what is attached to your house. If you type in ban smart meters you will find many sites that are organizing against the utilities. We are not getting anywhere though
because these utilities are big and powerful.
Excellent piece by Jennifer Crystal once again. Having had a previous traumatic brain injury (TBJ) in which I experienced similar system overload, I really appreciate the vivid way in which you explain this technology and information assault on the senses. I hope that those with current and previous TBJ’s can show even greater solidarity with Lymies moving forward.
Hello Catherine Wilson: Thank you for posting your very important comment regarding electromagnetic exposure and “Smart Meter” exacerbation of Lyme disease. To all readers I highly suggest you watch the complete video in the link below. Although this (older) video deals with cancer issues related to cell and wi-f exposures, it also details the criminal deceit and dictatorial nature of the Smart Meter campaign. The companies that “provide” these devices need to be shut down. The entire power grid is a known biological hazard (Please read the 2012 BioInitiative Report) and the companies who install these “smart” devices know there are serious health hazards originating from smart metering.
Governmental agencies that force you to comply with hazardous radiation exposures need to be challenged and/or directly counter attacked. Electromagnetic assaults from cellular phone towers, wi-fi mesh networks, portable DECT phones, and government surveillance systems, ALL represent a lethal and criminal biological assault on public citizens. Those that support the Smart Meter installations are indeed terrorists and assassins. This video will introduce readers to some of the symptoms reported by electrosensitive persons. Note how EM radiation symptoms are similar to chronic Lyme disease.
“Released in 2000, Public Exposure is the first – and still definitive – independently produced investigative report on this key issue, the human health dangers of Radio Frequency Radiation (RFR) from cell phones & cell towers… and what we can do to protect ourselves.
First Place award, EarthVision Film Festival.
Co-Produced by EON’s Mary Beth Brangan and Libby Kelley of the Council on Wireless Technology Impacts
http://www.youtube.com:80/watch?v=IJbCa-MZwXM
All I knew was that I have no feelings and I enjoy music a lot less than I used to… While at the same time, my brain has developed the annoying tendency to repeat the same tune over and over and over like a broken record. Good to know i’m not alone in suffering this creepy symptom. It’s interesting how I’m finding these and other obscure complaints I’ve had for years (along with the standard pain, stiffness, brain fog, fatigue) fall into the Lyme pattern.
I have the exact same symptoms of the song and word iteration. And noise sensitivities. It has made my life a living hell. I feel like Im never gonna get better.