Archive for the ‘Psychological Aspects’ Category

Lyme/MSIDS and Psychiatric Illness

  Uploaded on Dec 24, 2016
Lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital

This excellent video has Dr. Jane Marke discussing psychiatric illness in TBI patients, and while the technical lecture is given to psychiatrists it will be highly illuminating to patients.  If you only want to know about psychiatric symptoms associated with Lyme, skip to around minute 28.

Marke states,

“Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.”

http://www.janemarkemd.com/services-provided/lyme-psychiatry/  Her website states:

“Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome.  Treatment aimed directly at symptoms can relieve suffering rather quickly.  These symptoms include insomnia, anxiety, “brain fog”, obsessive-compulsive symptoms, depersonalization, depression, and rages.  But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi.”

Other noteworthy comments:

15:12 – Marke describes the flagella of borrelia is more like the winged arms on a wine bottle opener which powerfully propels the organism.

15:40 – She questions if psychiatric disorders are inflammatory diseases.  She lists: Autism, Alzheimer’s, Schizophrenia, Bipolar, PTSD, Depression, Stress, Sleep Deprivation, Self-harm, and Suicid Attempts.  She also describes a study in England observing children for over a decade in which children with a high IL-8 at age 8 have an 81% change of developing depression by age 18 and a 2-fold chance of becoming psychotic.

18:04 – She states that TBI’s (Tick Borne Illness) causes an impaired Hypopituitary Axis (HPA) which on a chronic basis decreases cortisol and increases inflammation.  

20:40 – Neurotoxins in the brain contribute to mental illness by causing problems with Homosysteine metabolism, which supresses remethylation, but that apoptosis (cell death) which can be reversed by supplementing with SamE.

21:30 – She says Post Treatment Lyme Syndrome (PTLS) is like a “dog whistle,” and usually demonstrates a bias on behalf of the authors who believe that 3 weeks of antibiotics cures LD.  She then goes on to tell of a study that revealed that nearly 50% of those labeled as PTLS (with persistent symptoms) had anti-brain antibodies compared to 16.5% of Post Treatment Healthy Controls (no symptoms).

23:15 – She points out that the Lyme vaccine was taken off the market due to people getting sick from it not from “poor sales” as the cabal keeps saying.  http://www.nytimes.com/2002/02/28/business/sole-lyme-vaccine-is-pulled-off-market.html

25:34 – Babesia and Bartonella are of extreme interest to psychiatrists.

*Bartonella produces most of the psychiatric problems as well as photophobia, floaters, blurred vision, bone pain, pain in the soles of the feet, headaches, the hallmark rash that looks like stretch marks, migratory polyneuropathy (burning, weakness, and numbness, on both sides of the body that moves around) and POTS (a fast heart-rate when one goes from a lying position to a standing position).  Patients tend to exhibit OCD, self-mutilating behaviors, seizures, rage attacks, and psychosis (bipolar under this).  

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/  Dr. Schaller’s Bartonella Checklist

https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

*Babesia patients present with day/night sweats, severe fatigue, and low blood pressure and exhibit anxiety, panic disorders, and depression.

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/  Dr. Schaller’s Babesia Checklist

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

26:35 Persisting atypical and cystic forms drive local inflammation

28:23 Shows an excellent slide of the percentage of patients with late Lyme and various impairments such as Encephalopathy, memory issues, cognitive impairment, motor issues, and more.

31:15 She sites a study in which researchers set out to prove that there is no such thing as Late Lyme causing psychiatric problems.  Compared to controls, chronic lyme patients met criteria for adult onset ADHD (both inattentive type and hyperactive/impulsive types combined) more frequently.  She encourages doctors to take “syndromes,” and try to find an etiology, rather than the reverse, which is what is typically done.  In this specific case, she’s asking doctors to question and try to find solid reasons (etiology) why an adult would all of a sudden have ADHD.

33:30 She says TBI patients are the worst sleepers she’s encountered.  This is important because it is when toxins are cleared in the brain.

35:30 Depression is common in TBI patients.

36:50 She has an informative slide on suicides from those with Lyme collected from newspapers.

38:55 Shows a slide on Case studies of Intrusive Symptoms such as musical hallucinations, intrusive thoughts, Cognitive Tics, catastrophising, OCD.

40:00 Pediatric Auto-Immune Neurological Disorder (PANDAS) – caused by a lot of different organisms, including TBI’s, and it can also occur in adults.  These folks do extremely well on antibiotics or Immunoglobulin.  http://www.mercurynews.com/2014/04/19/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards-before-stanford-doctors-make-bold-diagnosis-and-treatment/

http://www.pandasnetwork.org/understanding-pandaspans/ivig/

41:00 Depersonalization, Violence, self-harm, and schizophrenia can be a part of the picture with TBI’s. At 41:20 she tells the story of a little girl who would throw horrific temper tantrums in which she would destroy her room and then feel absolutely horrible after the fact.  She also had a psychotic episode.  Her MSIDS testing came back flagrantly positive.

42:21 Autism – There is vertical transmission of Lyme from mother to fetus.  Those with Bb in a study made remarkable improvement taking antibiotics.

42:56 Finding Spirochetes in Alzheimer’s patients as well as other pathogens.

https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/

https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

http://www.huffingtonpost.com/david-michael-conner/man-diagnosed-with-als-di_b_8891262.html

45:18 She points out the CDC guidelines and controversies, including the very poor testing and the vilification of small labs.  She recommends CLIA certified labs and that there is NO SUCH THING AS AN FDA APPROVED LAB.  She recommends IGeneX labs as they report the bands to you and uses more than 1 strain of Bb.

For more on IGeneX:  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

48:17 She shows a SPECT scan with marked improvement after treatment with antibiotics for Encephalopathy.  She also states that minocycline probably crosses the blood brain barrier the best.

49:02 is a slide with supplements that directly help detoxification, inflammation, and more.  (vitamins, glutathione, LDN, herbs, diet, and compounds such as NAC, etc).  For info on LDN:  https://madisonarealymesupportgroup.com/2016/12/18/ldn/ and on NAC: http://www.lifeextension.com/magazine/2010/5/n-acetyl-cysteine/page-01

50:40 Marke asks psychiatrists with treatment resistant patients to consider microbes.

For more information on psychiatric Lyme: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

For a great article for on-line counseling:  https://www.ruschellekhanna.com/onlinetherapy

Category:

Lyme, Lyme Vaccine, Psychological Aspects, research, Testing, Treatment

Sick-Shaming of Lyme/MSIDS Patients

An article in “The Mighty,” is a straight forward commentary on what many Lyme/MSIDS patients go through in their quest for medical treatment by medical professionals who verbally abuse them.

https://themighty.com/2017/01/chronic-lyme-disease-gaslighting/ by Lori Dennis

There is a term in clinical psychology known as “gaslighting.” Its origins are the 1938 play and 1944 film “Gas Light.” Gaslighting is “a form of mental abuse in which information is twisted or spun, selectively omitted to favor the abuser, or false information is presented with the intent of making victims doubt their own memory, perception, and sanity.”

Gaslighting, akin to “sick shaming” in the case of chronic Lyme disease, is a brilliantly orchestrated method perpetrated by those in power who either purposely or inadvertently damage your trust in yourself and in your own reality by making you feel both “crazy” and “wrong.” When you have an illness like chronic Lyme, it’s easy to be the victim of this tactic. Chronic Lyme disease is a perfect yet tragic example of this ploy in action, executed by a global cast of characters against the most vulnerable among us.

This sounds so outrageous. And it is. But as we all know, truth is often stranger than fiction.

Every single day in every corner of the world, Lyme patients are being gaslit in doctors offices, hospitals, clinics and the like. In fact, the very professionals in whom we place our trust, those we hope will care about our health and well-being, are doing far more harm than good by minimizing, trivializing, denying, discrediting, doubting, diverting, blaming, shaming, and patronizing Lyme patients and their symptoms.

The years of falsehoods, misinformation, greed, profit, ego, and arrogance driving this behavior carried out by the medical powers-that-be — the very people who have prevented chronic Lyme disease from getting the medical attention it so deserves — have turned Lyme disease into a universal experience of gaslighting, sick shaming, blaming and the discrediting of millions of patients worldwide.

Not a day goes by when Lyme patients, in response to their cries for help, are told by their doctors that they can’t possibly have chronic Lyme disease because…

“I don’t believe in Lyme…You were nowhere near a tick-infested region, were you?…I would have tested you for it if I thought it was Lyme…Something would have shown up in your blood test…Your blood tests were indeterminate, so you can’t have Lyme…Your blood tests were negative so you don’t have Lyme…It’s a false positive, you don’t have Lyme…You got better after a round of antibiotics so it’s cured…This disease is very rare…There is no Lyme in this country, city, town, region…If you didn’t see the tick, then you can’t have Lyme…Did you have a rash?…If you didn’t see the bull’s-eye rash, then you don’t have Lyme…It’s post-treatment Lyme disease, don’t worry, it will resolve itself…It’s post-treatment Lyme disease syndrome and there’s nothing more we can do…Go home and find some distractions…Everyone with Lyme has made it up…It’s a figment of your imagination…There is no such thing…The internet is wrong…Stop Googling…When did you get your medical degree?…With all due respect, Google is not medical school…Remember, I’m the one with the credentials…I can assure you that ticks don’t cross the border…You didn’t go hunting in the highlands of Scotland, did you?…You don’t have an elevated white blood cell count so you can’t have Lyme…You don’t have arthritis so you can’t have Lyme…Your joints are fine, aren’t they?…No one gets headaches with Lyme disease…Lyme doesn’t cause your symptoms…I don’t know anything about Lyme disease but I can tell you, you don’t have it…No one can have that many symptoms…No one can be that sick…You look too good…You’re a beautiful girl and you don’t need this illness to get attention…It’s just menopause…These are just normal signs of aging…Everyone feels tired…You’re just lazy…Get some fresh air and exercise…You just need to get out and get busy…You’re depressed…You’re stressed…You’re just feeling anxious…It’s likely an inherent weakness…You just need to think positively…It’s all in your head…Stop dwelling on your problems…Try praying…If you just stop thinking about it, you’ll feel better…Are you familiar with Freud?…Here, I’ll refer you to a psychiatrist…An antidepressant and some therapy should do the trick.”

These inane pronouncements are made by doctors daily causing Lyme patients to feel like they’re “crazy,” lazy, not smart enough, overdramatizing, misinterpreting, histrionic, hypochondriacal, malingering, and just plain wrong. And to make matters worse, they are rarely given any alternative diagnoses and treatment solutions that are of any use. The best many doctors can do, it seems, is to tell their patients it’s all in their heads and then offload them to a psychiatrist for meds and therapy.

I can assure you that chronic Lyme disease is very real, the pain Lyme patients are forced to endure is very real, and the number of people affected by the disease — both directly and indirectly — is growing exponentially while the medical establishment continues to do very little to address it.

You may ask, “Why is this happening? Why would doctors go to such lengths to dismiss and shame their patients?”

The best I can say is the answers are complex. Just know that it’s a 40-year-old, multi-faceted construction of falsehoods, obfuscations, opportunism, trickle down effects, herd mentality, and the like, orchestrated by those who have much to gain by gaslighting and a great deal to lose if they don’t.

Lori has written the book “Lyme Madness” which is now available on Amazon. Please visit www.lymemadness.ca and www.facebook.com/lymemadness/ for more posts and messages about chronic Lyme.

Lyme Madness™ chronicles the journey of Lori’s son’s chronic illness and their headlong plunge down a confusing, overwhelming, and mind-bending rabbit hole to help him recover his health.  It reflects their eighteen month experience of desperately trying to procure a proper clinical diagnosis; it chronicles the subsequent months they spent searching for treatments that would hopefully make a difference; and it details the daily researching and seeking of a myriad of alternative approaches for his ultimate healing – all to release him from the unsympathetic grip of this complex neurological condition.

 

 

Category:

Activism, Psychological Aspects

Bug That Hijacked My Mind (Part 1)

This article, copied in full from the Huffington Post, is an example of how MSIDS (multi systemic infectious disease syndrome, or Lyme with friends) can cause horrific psychiatric manifestations.  If you are experiencing these symptoms, print out and take the ILADS brochure to your doctor.  The link is found about half way through the article.  Also, please note that treatment ameliorated his anxiety.

http://www.huffingtonpost.com/david-michael-conner/the-insanity-of-lyme-disease_b_8696794.html  by David Michael Conner

I sat in my Honda Civic watching people arrive one by one at Lynnet’s house, feeling like a stalker. So many other people were showing up, but so far not a single person I knew. You’re 27, I told myself. This is no big deal. And then I braced the bottle of wine I had bought for the party as I shifted the car into drive and pulled away from the curb. Somehow a panicked sparrow had taken up the space in my chest where my heart should be, beating its wings madly against the breastbone, and my whole body was burning and stinging. I thought I was going to pass out.

My first panic attack hit hard during graduate school. Although I had never been a socialite and never enjoyed forcing small talk with stranger, I had never before been afraid of people. I never had a disorder that scared me away from others and which limited my capabilities. I only recognized what I was feeling because I had for years read information from the National Institute of Mental Health (NIMH) and National Alliance on Mental Illness (NAMI) as part of my job. Huh, I thought. I have social anxiety. Who knew?

I had flourished as an undergraduate, but the undergrad lifestyle didn’t require schmoozing at professors’ homes with respected and award-winning authors, agents, et al. I wasn’t cut out for it. I made it through, but certainly not on the strength of my ability to wine-and-hors-d’oeuvre Very Important People.

I accepted the limitations this placed on my life as panic attacks became more frequent in social situations, even as they encroached on my professional life, which involved a lot of receptions, group dinners and related functions. But by my early 30s, anxiety events were getting out of hand: as a personal challenge, I went to a networking function co-hosted by CNN and the National Lesbian and Gay Journalists Association, and after only mustering the will to speak to one person (who turned out to be the event caterer), I felt suddenly as if I had been placed under a broiler, burning hot, disoriented, faint. I ran, literally, outside and walked home with tears flowing uncontrollably down my face from the pressures of inexplicable panic and a general feeling of failure.

Within months, I began to experience recurring visions of my body toppling over the edge of my 10-story apartment building. Over and over, like a film reel on a loop. I had never had any sort of mental vision before. This was totally new and disturbing, like a nightmare intruding on waking life. Eventually, I was so afraid of people that I ran out of food because I couldn’t handle grocery shopping, and I began to order Peapod delivery service. I had developed an intimate relationship with depression since my adolescence, but this was something else entirely — something far more active, aggressive and almost demonic feeling. At 32, I found a psychiatrist to cope with these increasingly disturbing and totally new problems, which coincided with an array of physical health problems that doctors at the time thought might be caused by multiple sclerosis.

My psychiatrist immediately loaded me up with Zoloft, Wellbutrin, Clonopin and a low dose of Seroquel — typically prescribed for bipolar disorder and schizophrenia, but sometimes prescribed “off label” in very low doses for use as a sleep aid and to treat obsessive-compulsive disorder. She said the visions and paranoia were a kind of psychosis that could fall into OCD or other severe anxiety categories, or perhaps could be a manifestation of bipolar mania. Although I had read a great deal about mental illness as a primary part of my job, and interacted with mental health advocates and researchers, I wasn’t immune to the stigma; I didn’t want to be prescribed an “atypical antipsychotic.” Yet I was desperate enough to reluctantly agree to take it. This was a life-or-death situation, as the constant playback of seeing myself fall from great heights was disturbing from the beginning, but was now beginning to feel like an inevitable prediction of what was to come.

Years into treatment, the scary visions had ceased but the high anxiety still rode alongside me, if not usually in the driver’s seat.

I was diagnosed with Lyme disease last February, at age 36. Several months into antibiotic treatment, the constant feeling of agitated panic I had come to accept as a part of my intrinsic personality had diminished so much that I had no feeling of dread whatsoever about an upcoming three-day meeting that involved networking with 30 people, some total strangers. This unusual lack of panic was almost as jarring as the first panic attack I experienced; it was that novel.

If I, or if any one of the dozen-plus doctors I’ve seen over the past five years, had seen this brochure from the International Lyme and Associated Disorders Society (ILADS), http://www.ilads.org/lyme/lyme-brochure-psych-2014.pdf life could have been so much easier so many years ago. It is written for mental health practitioners, but the brochure details emotional and psychiatric — as well as, crucially, cognitive — symptoms of Lyme, as well as non-psychiatric symptoms that in combination can lead to a differential clinical diagnosis of Lyme. And such a diagnosis and resulting treatment for Lyme disease can be just as important to improving neuro-psychiatric symptoms of Lyme as can cognitive-behavioral therapy and psych medications.

In the next post, I’ll discuss the case of my clinical doppelganger — the subject of a recent medical case study whose age and psychiatric and physical symptoms almost exactly mirror mine, but whose outcome has not fared as well as mine. I’ll also talk about how a little awareness can prevent these journeys into madness, which unfortunately are common symptoms of Lyme disease, and whose symptoms are treated with a Band-Aid approach using antidepressants, antianxiolytic, and antipsychotic prescription medications instead of treating the infectious disease at the root.

___________________

If you — or someone you know — need help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you are outside of the U.S., please visit the International Association for Suicide Prevention for a database of international resources.

For more information on psychiatric issues with MSIDS:

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

http://up.anv.bz/latest/anvload.html?key=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“>http://up.anv.bz/latest/anvload.html?key=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  (Amy Hilfiger on Fox5News)

https://madisonarealymesupportgroup.com/2015/12/06/tips-for-newbies/

 

Category:

Activism, Lyme, Psychological Aspects, Uncategorized

Dr. Frid – Neuro Lyme

  Approx. 19 min.

Published on Nov 21, 2016  FOX5NY
The full interview with Dr. Elena Frid for Lyme & Reason 2.0.

Excellent interview with Dr. Frid on Neurological Lyme. http://www.elenafridmd.com  She is honest and humble enough to give patients credit for teaching her a lot about Lyme Disease.  She also states it’s imperative to deal with autoimmune issues throughout treatment.

Dr. Frid sees clients with complex Neuro-Lyme manifestations which often hide behind other illnesses including: Multiple Sclerosis, ADHD, Autism, Arthritis, Alzheimer’s, Parkinson’s disease, Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue Syndrome and many others.

She frequently collaborates on complex pediatric cases with Dr. Charles Ray Jones, a world leading pediatric Lyme disease specialist with over 40 year career experience in dealing with children with Lyme disease and other Tick Borne Illnesses.

In addition to her practice, Dr. Frid lends her expertise to various organizations and news programs by speaking about Lyme disease and its effect on the nervous system. She has been featured on NY1 news, 710 talk radio, interviewed for a Fox News Special on Lyme disease as well as various podcasts. She offers her medical knowledge to patients on her YouTube channel with weekly posts of interesting and complex cases that she comes across in her practice.

To stay connected and up-to-date with Dr. Frid’s monthly newsletter and weekly YouTube posts as well as other announcements please follow the News Link to subscribe. http://www.elenafridmd.com/copy-of-news

  Approx. 1 hour  FOX5NY

Published on Nov 18, 2016
A replay of a Facebook Live chat.

FOX5NY started doing pieces on Lyme Disease due to Lew Leone, vice president and general manager of WNYW-FOX 5 and WWOR-My9, FOX Television Stations’ New York duopoly.  While saddened to hear his wife has LD, we are the grateful recipients of his desire and ability to give this pandemic and epidemic the air time it deserves.

Thank you Mr. Leone and FOX5NY!

Category:

Lyme, Psychological Aspects, Treatment

Keeping Your Fighting Spirit in the Face of a Lyme Relapse

The Mighty is an online newsletter for the Chronically ill.  There is a section for Lyme patients to submit and share their stories:  https://themighty.com/category/lyme-disease/

A Lyme Relapse

https://themighty.com/2016/11/lyme-disease-relapse/  By Susan Pogorzelski

I thought I’d put it behind me. Not for good — I’ll always advocate for those with Lyme disease and do whatever I can to spread awareness and education — but I thought I’d moved on, that it was a thing of the past, that it was something I could say I survived and now I was ready to live my life.

Another chapter. A different story. The life this disease stole from me was right there, for the taking. But there is no separation. Just like I can’t separate myself from this illness, I can’t separate living my life with having a voice connected to the Lyme community.

I say community like it’s some kind of club, but it’s not one you ever want to be a part of. Because this community is made up of thousands upon thousands of people suffering every day, fighting a relentless disease. It has no end — just cycles of feeling good until you don’t anymore.

I fully understand why it’s so easy to deny this disease, especially when there’s so much misinformation out there by the people who are supposed to be helping us. It’s why this disease has become so political in nature, why there’s this so-called “war” between patients and doctors when patients should have only one battle to fight — that against this illness. I’ve lived with this disease, I fought that battle. I thought I won.

But it’s not just one battle.

When you have Lyme disease and its co-infections, you’re fighting a war — just you and the bacteria, with your body as the battleground.

I was tired of fighting.

Which is why, after 15 years of being misdiagnosed, two-and-a-half years of hell in treatment, and six months in remission, I chose to ignore the familiar pain that snuck back into my joints, the fatigue that fell in waves across my mind and made my body feel weak, the tingling in my fingers that’s a sign of neuropathy, and the headaches that crawled up the back of my head. I made excuse after excuse and tried to find ways to manage these symptoms: holistic remedies and essential oils, methods of detoxing and changing my diet, walking the dogs when even small bits of exercise tired me out…

But it was all just padding — a Band-Aid on a much larger problem that I didn’t want to admit.

I cried nearly every day when I was sick with Lyme disease, feeling guilty because I couldn’t go into work. I could barely walk and wasn’t lucid enough to focus on the computer screen, but still I berated myself for not being there to help my colleagues and do my job. I pushed myself to get better, even though I knew how fragile my health had become, and when I finally went into remission, I constantly feared I would always be two steps away from a relapse.

I didn’t take care of myself then. But I was taking care of myself now.

Resigning from my corporate finance job was a long time coming, as increased pressure, unabated stress, and feeling undervalued despite my dedication to the job threw me into a depression. Being sick for so long didn’t help with those coping abilities, but it was being sick for so long that helped me learn the lesson that I think has been shadowing me my entire life:

A drowning man will pull you under in an effort to save himself. To keep yourself from drowning with him, you have to save yourself first.

I was in a position where my job had begun to affect every other aspect of my life, and suddenly small problems that normally would be only a nuisance became insurmountable obstacles that I could no longer cope with. I didn’t expect to make the decision when I did. I wanted to wait until I had something lined up, until I knew what my next step in my career would be.

But life doesn’t always come neatly packaged like that, and even though I’d tried taking steps back towards happiness, back towards myself, it was like there was this blockage, and nothing else — nothing good — could come through.

I hit rock bottom. And then, I tunneled through rock bottom and hit rock bottom again.

Something had to give, so I made the decision to resign.

While I signed up to supplement my income through temp work, I waited to take on any new assignments, learning the hard way that I needed to take the time to separate myself from my last job and whatever work I was going into next. I was so stressed and burned out, caught on the verge of a relapse, that I didn’t think I could manage taking care of myself, let alone a new job.

So, I spent a few weeks recovering and discovering myself again: I picked up more hours at the vintage bookstore where I’d been working Saturdays, I finished writing my book about Lyme disease, I took the dogs for long walks and watched them play in the yard as the weather grew unseasonably warm. I napped by choice, not by need. I read books for pleasure again as my mind cleared, effortlessly sliding into new worlds. I took on a new editing client. As the days passed, I felt my soul expand.

Here was Susan again. I was healthy. I was happy. I was doing everything I loved and becoming more me because of it. I was giving myself the time to recover not just physically, but mentally and emotionally — time I’d never given myself at the height of this illness.

But then, after a month, I was asked to go back to a portion of the job I’d just left, to fill in for five weeks during the summer rush.

I went.

Truthfully, it was what I needed— a means of earning back some lost income and the structure necessary to return to the 9-5 working world for future temp assignments. But that stress crept back up quickly, and suddenly I found myself fighting every day for the ability to focus when exhaustion drained me, for some relief from pain that had me back in the Epsom salt bath every night, for time off on the weekends because I need two whole days to recover when familiar symptoms slowly started to edge their way back in.

I finally had to accept what I’d been denying for months: I was in the middle of a relapse.

Back on the medicine, back to taking all those supplements — a dozen and more bottles that fill the bread drawer — and back to monthly visits to my doctor upstate.

This time, I vowed it was going to be different.

Those first few months of the relapse, I sank into a mild depression knowing just what a relapse meant. For the first two-and-a-half years of this illness, the thought of remission alone fueled me forward, motivating me further along in my recovery as I fought for life and for my dreams. I knew what I was working for, and when I reached remission, I thought I finally had the energy to get there.

I thought, I finally have my life on track as I pursue these dreams. I thought, I can finally show the world what I’m capable of. I thought, now I can live the life I always wanted – I can be healthy, too!

No more pain! No more naps unless I want them! No more limits!

But this disease creates limits, where everything becomes a choice. I could mow the lawn or clean my house. I could do the dishes or cook dinner. I could write or visit with my family. I can never do both. Not when you’re running on empty, anyway, and you have to decide how to use that last bit of gas that’s reserved for emergencies — just enough to get you to safety on the side of the road.

This disease sucks the life right out of you, and even now, a full year since I relapsed, it’s hard to accept that I’m back here again. There has been so much anger, so much resentment, so many tears of frustration at being given a glimpse of something I’ve longed for — a glimpse of a healthy life — only to have it taken away again.

But I’m not back there again — at least, not at the very beginning. And when I look back, I can see I’m not the same, either. Maybe that’s the difference.

I know what I’m facing now. I know what I’m capable of. I know that I’ll carry that determined spirit and everything I’ve been through and learned with me as I keep fighting — for others, for myself. I got through this before, and I know I can get through it again. I have to.

Because I’m not giving up.

Category:

Psychological Aspects