From the minute my failing bladder wakes me, I start a new day in the war against the army of microbes ravaging my body. There are several bad actors in my two decade long health collapse. Bartonella is the featured player at the moment, and the rifampin prescribed for it is pushing the Herxheimer effect to new limits of undesirability.
Every day begins with the same routine. My feet hit the floor and my dog Mimzy’s four feet hit the floor right after mine. If Kitty has opted to join us for the night, her feet are next. In typical cat form, she is in no rush. Everything is on her terms. Mimz and Kitty are my constant companions and source of unconditional love. I tend to their needs before I do anything else. After getting up, I stand still for a moment to get my balance, because it is awful these days. After stumbling downstairs to let the girls out I race to the bathroom to conduct my own business. The morning begins with diarrhea, nausea and unbearable anxiety.
Concluding the pet ritual, I refocus on the battlefield with my own body. I have to eat, take medicine and not throw up. These are key goals of my daily life. The nausea is overwhelming so the thought of having to eat ratchets up the anxiety. As I walk in circles delaying the inevitable, the long list of things I must tend to pushes its way into my consciousness. I begin an immediate assessment of my physical and executive functioning and decide what, if anything, I am capable of completing. My ability to function and will to perform necessary tasks are strangled by neurosis and physical weakness. The anxiety skyrockets. “I need to take my medicine.” I think to myself. It stares at me from it’s holding container waiting to inflict its misery. I take the morning dose out and set it on a tiny dish. “Ugh”, I grunt as I notice it is a rifampin day. I only take rifampin three times a week. Three miserable days a week.
For about a half hour I wrestle with my psyche and limitations until I finally come to terms with the reality: The nausea and anxiety won’t subside on their own. That is when I gather my supplies and head outside to the patio, chastising myself through every step. “I shouldn’t have to do this”, I mumble under my breath. Mimzy and Kitty circle around me as if to say, “We understand. You do what you have to do.”
After a few long puffs of weed, I head back inside. I contemplate, “Should I empty the dishwasher or throw in wash?” The medicine continues to taunts me from it’s little dish. The next part of the ritual is to make my own seltzer with double filtered water and a soda stream. I fill a glass, put a few Stevia drops and squeeze in some lemon, lime, orange or grapefruit. I toss in some ice and a stainless steel straw to minimize the acid erosion of my teeth. I freaking love my stainless steel straws.
Next is food preparation. By now the nausea is subsiding, so looking at and smelling food no longer triggers the gag reflex. Breakfast could be anything from a handful of almonds and dates to steak and potatoes left over from yesterday’s dinner. I just go for anything that appeals to me and will prevent vomiting. I have vomited enough for five people for a lifetime.
With ADHD grabbing me by the throat, I try to stay focused on eating. A rogue glass in the family room could catch my eye and launch a dish round up mission that could pull me off track for a half hour. I FORCE myself to stay focused by incentive. After I swallow my medicine, I permit myself to visit my favorite FB group- A Little Lyme Laughter. It has become an integral part of my treatment.
As the medication “preparation treatment” kicks in, I start eating with great joy. After a few bites, I take all 10 pills at once with one big sip of seltzer. If I swallowed every pill in my daily medi-minder one at a time, I would literally spend an hour a day just swallowing medicine. The mid-day and late night supplements go down in two gulps, because there are about 15 different pills, and a few look like horse pills. The glutathione and magnesium alone would choke the smallest of elephants.
With the meds down, I finally, I get to look over the new posts in Lyme Laughter. Without fail, members of the group have worked magic in the wee hours of the morning posting new items to review. And so begins the laughing — ache in the side, tears streaming down my face laughter. These are my peeps. We suffer so terribly and depend greatly on one another to keep fighting. There is a lot of inappropriate material. I think we all purposely see how far we can push the envelope until someone cries, “foul”. It is strangely cathartic to behave badly in unison. Although we offend from time to time, it is only in jest – the way Key and Peele would poke fun at a situation. To show my appreciation for my healing team, I made a video. This is true lyme life; complete with bedhead, bathrobe, no makeup and of course, my beats. Lyme is not a glamorous disease, so there was no attempt to glam up for this. A Little Lyme Laughter
Once I’ve cleared through the feed, I get up, go about tidying the kitchen as my mind begins to swell with all the things I want to write about. I move from task to task and relax within my bubble of thought. While shoving cloths into the washer or putting away dishes, I realize I am no longer anxious, nauseated and distracted. I’m functioning. And I ask myself, “Why do you beat yourself up every morning for using weed to survive?” It is a natural herb that enables me to fight pain, tears and the dark thoughts that coincide with chronic illness. I re-affirm that I am on a good mission and that I should work hard to change the perception of using marijuana to manage symptoms of chronic illness.
One of the most frightening symptoms of bartonella (and in my case, exacerbated by rifampin) is rage. For the scientific and physiological explanation for lyme/bartonella rage, you can review the linked presentation prepared by Dr. Robert Bransfield, Psychiatrist. I’ll provide the context of the madness. Allow me to illustrate.
I picture my nerves like frayed electrical wires. This illness strips away the myelin sheathing that surrounds nerves leaving them exposed and over sensitive. Continuously operating in a state of fatigue and having to play a contributing role to the household cocks the trigger of my psyche. My mind and hands are always twitchy as I face the ordeals du jour . I drag myself through daily routines by having an ongoing dialog with myself. This keeps me moving forward.
It is a good day if my first use of the word ‘fuck’ doesn’t occur till I leave the house. When the first ‘f’ bomb drops at 7:15 a.m. because I can’t open a bag of oatmeal, I know the next twelve hours will be a challenge. These are the times that simple tasks like driving can be an absolute nightmare. Running errands, using technology and talking with customer service professionals paves the highway to hell. Now that I manage all my mother’s affairs following her relocation, my life has been a continual stream of phone calls, faxes, notary visits, account changes etc. I can barely keep my own affairs in order. This added burden ups the stress level to “caution – stroke possibility high”. Each transaction is fraught with frustration that nudges me closer to the edge of the cliff. Add to this my mother’s toxic and delusional behavior. It inevitably causes a release of stress hormones in my body. My nerves tingle. Every moment I have to interact with the woman that brought me into the world is physically and emotionally draining. It is profoundly sad. My reserve tank of patience has been running exceedingly low. For the past two years, I have been running on emotional fumes.
The other day, started off on a sour note. I woke up with bartonella rage simmering in my subconscious. There I was, standing at the cliff of insanity, toes curling over the edge waiting for a breeze to blow me to my final resting place. All I wanted to do was smoke weed to calm down, take a bath and rest, but I couldn’t. I had to drive out to my Mother’s to take her on a few errands and review (for the fifth time in two weeks) the status of her finances. The fact that I carry this burden alone because my sister checked out of the relationship and left me holding the “mommy bag” makes my whole body feel hot with anger. I hadn’t even left the house and I felt twisted up in knots at the idea of facing the day’s events. I would surely be vomiting by 10:00 if I took my medicine with out smoking pot, so I skipped my morning dose of both. Driving stoned is not an option. Unfortunately, although not surprising, my mother shoved me right off the cliff that day. She pulled the virtual trigger to my psyche and kicked off an episode of blind rage unlike anything I have experienced.
It has been building up over a lifetime. My mother’s childhood was indescribably miserable. She was one of 14 children and exceedingly poor. My dad was one of nine and the same. Neither had any decent parenting role model. My childhood; had less indescribably misery than either of theirs, but it was not a healthy environment. The times when I needed a mother the most were the times she drove the knife in the hardest. I’m covered in invisible scars. Regardless, a child wants parents that are happy. Having always been made to feel like the source of their misery, I tried to make up for it. I made my parents’ happiness my responsibility and it destroyed me. With a father that could be described as a loving Hitler, I never dared to express my own opinions or ask for my needs to be filled. Whenever either of them bruised me, I swallowed hard and accepted my badness. I have no clue how I managed to reach this stage in life. It is rather miraculous that I’m not dead or institutionalized.
Without getting sidetracked by writing an extensive narrative of the events that lead up to it, I will summarize by saying this: After six months of putting everything in my life on hold (including my health) to tend to her every need and demand, she verbally abused me one time too many. I snapped. Mommy decided to spew her venom at me while I was driving her to the bank. Her bitter attack and nasty allegations brought me to the emotional state of an unwanted puppy that pooped on the rug. As we rode along a two lane country road, a physiological change of some sort engulfed my entire body. I started spitting my own vile words. I was aware of the fact I was coming completely unglued, but was unable to control the rage. Fortunately, I was aware that my vision and functioning was hugely momentarily impaired. Before I drove much further, I swerved off the road and temporarily parked on the side, half of my car in some poor soul’s front lawn. I threw the car into park and unleashed a beast that was hiding inside for quite some time. In a dire attempt to defuse my fury, I smashed the palm of my hand into the navigation display of my jeep – creating a spider web-like system of cracks through the entire display rendering it unusable. This was among the top five most frightening experiences of my life. If I told you the other three or four, you would probably need to make an appointment with your own therapist. I’ll spare you. What I know for a fact: I would never have exploded as I did if was under the influence of weed. I have prevented many similar volcanic-like eruptions in the past by taking a few hits and letting the anger burn off.
By immediately apologizing and confessing that my outburst was a combination Herxheimer bartonella meltdown, I managed to pull myself together, complete the errands we set out to do and returned safely back home a couple hours later. I was mentally and physically depleted. I felt like all my bones and organs few out of my body through my mouth during my tirade. All that was left was a flesh pile filled with Morgellons fibers. I knew this episode would lead to a seizure later in the day when my fatigue hit its peak. I have begun to notice a pattern. Since it was only 2:00 in the afternoon, I lit up hoping to head it off, delay it till later, or at minimum, reduce its severity. Perhaps my next blog will be about what it is like to have one of these “seizure” like episodes. But, I digress.
The rest of the day was a blur and I don’t recall much aside from telling my husband that I destroyed the navigation system and watching his face pale when I explained why. He has seen a similar wrath before. In fact, many years ago (long before diagnosis) he had to catch a full, half gallon milk carton I threw at him like I was Tom Brady.
Temporary insanity is real, my friends. I believe I am on point when I say “It is the darkest corner of neurological disease that exists.” We as a nation wonder why there is an up-tick in violence. Perhaps is runs parallel to the escalating epidemic of misdiagnosed, untreated, misunderstood microbial infections causing mental illness. The crisis is made worse by an overwhelming 45,000 person deficit in mental health practitioners and mental health care facilities.
Research conducted by Dr. Robert Bransfield provides an eye opening perspective into the world of infectious disease and mental health. Below is a link to his presentation. It is time to change the narrative about mental health. Our collective future depends on it.
Featured song: A Million Reasons – Lady Gaga