The New Normal

This is a rough day, and by rough, I mean I was overheard by my daughters muttering "I would honestly rather die than live through another year of this disease.". My body has had it. Every one of my cells is in some sort of pain. I have a growing mental list of things that need done around the house, and a shrinking reservoir of energy with which to accomplish them.

I can't decide what the worst part of Late Stage Lyme is... is it my metabolic system's special talent of gaining five pounds for every pound of food consumed (how is this scientifically even possible??!)? Is it the weakness that suddenly settles over me at random, weakness so intense that it feels like my bones are going to implode under the crushing weight of the atmosphere? The aching pain in my fingers and toes that feels like they are being perpetually pulled out to the side? The neverending sensation of invisible bugs crawling around on my skin, or water trickling down my legs and arms? Is it the exhaustion that never lets up, even after a full night's sleep on a high quality mattress? Is it the blistering rashes on my legs and chest when my skin comes into contact with water, like, say, every time I have a shower? The contact allergies that come and go, like the sudden intolerance to toothpaste that results in peeling and blistering on my gums and the inside of my mouth when I brush my teeth? Is it the sudden electric shocks that race along my spine, legs and arms if I move a certain way? Or the isolation that occurs because I'm too tired to get out and do things, and when I do drag myself out, I'm too tired to interact with anyone? Is it the constant ebb and flow, back and forth, up and down of feeling like I'm improving, and then going back to the starting line and having to change my meds for the millionth time? Or the fact that my own medical system doesn't recognize this as a legitimate disease and would rather diagnose me with something fatal (ALS) and shovel painkillers into me while I wait to die, instead of trying the long term antibiotic and antiviral therapes that have been proven to help, so I have to pay for all my treatments, medications and supplies myself, instead of having my healthcre covered by the medical insurance that is supposed to be there for me when I need it? Or maybe the irritation of having my ex husband tell our children that I'm not really sick, and that Lyme Disease isn't real?

Today I think it's the way my brain is compromised. I can't remember what I thought about five minutes ago. Just writing this post has taken hours and countless re-reads. I'm learning to compensate. Sort of. I'm learning that I can't trust my brain, which means that I have to trust my husband's and kids' brains and memories more. The kids got away with some pretty insane stuff until I figured out what they were up to and learned how to say "Look, I may have said you could eat chocolate cake for dinner, but now I'm saying you can't. So eat your dinner, or no cake.".

Have you ever seen the movie "A Beautiful Mind", with Russell Crowe? It's about a man with paranoid schizophrenia and a delusional disorder who learns not to trust his mind when it tells him irrational things. I feel like that guy. A lot. I'll have days where all I do is cry, and I'm convinced that there is absolutely no hope, I'm never going to get better, I'm never going to be able to get a job, and we're all going to be homeless and living on the street because we won't be able to pay the bills or afford food and housing. Honestly, looking at my bank account, some days it's hard NOT to believe that. But I'm learning to remind myself that my emotions will change soon, that I have a literal, physical, actual bacterial infection in my brain, and I will be able to process and deal with things differently as soon as this attack passes.

If I try and wrap my head around the looming probability of another several years of taking thirty medicines a day, putting in my own i.v. every day, weekly hour-long round trips trips to the doctor's office with the price of gas in Vancouver being the highest in Canada, trying to come up with the money to finance all the treatments and and this perpetual roller coaster of energy, emotions, pain, weakness and mobility, it's all too much and I just want to give up and die. Some days I seriously consider just stopping all my meds and just trying to stay comfortable until my heart eventually can't beat one more time and just quits.

This is the kind of day when I need to remind myself... repeatedly... not to think about the future. Just think about what I'm going to do today. I'm going to go upstairs (if I can get there) and take my meds, I'm going to try and start my i.v. (my veins are so fragile now that I couldn't get it to work the last two days, and now I am starting to feel very ill because the bacteria are taking over again), I'm going to see the kids off to their dad's for his birthday dinner, and I'm going to pop a handful of painkillers so I can enjoy Date Night with my husband. I can't plan my life like a normal person. I can't set goals for the future. It's too overwhelming to have to keep adjusting my view of life down the road. So I live in the here and now, and it keeps me from calling Dr. Kavorkian. This is my new normal.

Do me a favor... educate yourself about this disease, know how to recognize signs and symptoms, know how to cut down on your risk of exposure, and learn how to treat it and where to find treatment. Unfortunately, the vast majority of us believe that our doctors know everything about this disease and how to treat it, when in reality, until our medical systems and the CDC decide they can no longer put the almighty dollar ahead of people's lives and legitimize Chronic Lyme Disease, doctors will continue to deny its existence, put their faith in a blood test that is incredibly inaccurate and rife with false negatives, and continue to diagnose people incorrectly with such things as Fibromyalgia, Rheumatoid Arthritis, CFS, lupus, ALS, Parkinsons, Alzheimers, dementia, psychological disorders, and attention-seeking. Lyme is known to imitate all sorts of illnesses, and almost every person with Late Stage Lyme can tell a story of going from one doctor after another and receiving one wrong diagnosis after another before finally being diagnosed with Lyme, by which time there has been irreversible organ and body system damage.

I had a doctor tell me she thought I had "sero-negative inflammatory arthritis" because none of my test results for arthritis came back positive. Another doctor looked me dead in the eye and said "If we didn't know that Chronic Lyme Disease isn't a real thing, I'd swear that's what you have.". Yet another doctor argued with me that I couldn't possibly have Lyme Disease because "we don't have ticks in Canada". Uhm... the CDC in the U.S. just amended their figures from 3,000 new cases of Lyme per year to more than 300,000 new cases per year, but Canadian doctors believe those ticks just stop at the border?! The Lower Mainland of British Columbia, where I live, was recently classified a "tick endemic area", meaning we are literally overrun with ticks. We have brush, we have ticks, we're in a temperate rainforest... ask any veterinarian in Canada about Lyme Disease, and they'll tell you they see it in house pets all the time. The same ticks that bite Fido and Fluffy will be just as happy to bite you, believe me.

And that brings up another point... think for a minute about there being more than 300,000 people coming down with Lyme Disease every single year. So a million new cases every three years. Think about the fact that until this year, they were only diagnosing and reporting about 3,000 new cases. That's over 297,000 people with Lyme Disease every year for the last who-knows-how-many years, not being treated. Does a bacterial infection that's left untreated just disappear without treatment? Or does it slowly become worse and worse until the person is either an invalid or dies? How many people have been wrongly diagnosed, when a month of antibiotics at the beginning could have eradicated the infection? How many pregnant mothers have passed this infection on to their unborn babies, or to their infants via breastfeeding? How many men and women have passed this infection on to their partners through bodily fluids? Yes, it has now been officially classed an STD.

Chances are very good that you know someone, or more than likely several someones, who have or will have Lyme Disease at some point. In my next post, I will detail how to recognize, prevent and treat this disease. But right now I'm just too exhusted and sore...