I've been thinking a lot about returning to normal lately and constantly wondering what normal will be for me in recovery. After all, I haven't really been "normal" in a decade.
I think the first thing people wonder about someone who's gone undiagnosed with a chronic disease for as long as I have, or longer in some cases, is why that person didn't keep seeking answers. Isn't that what a normal person would do? It's one of those questions that only those with Lyme would understand. Lyme beats you down so much, you have so little in the tank to even think about where to look for answers if they don't exist in standard medicine or even homeopathy, so you begin to live a different life. For me, I quit looking after 12 doctors. For others they quit looking after 25, 40 or more doctors.
Instead of seeking answers and getting more dead ends, you adjust to your symptoms. Your new normal is living a life with and in pain. You cope. It never gets better. Every little change or stressor makes it worse and yet you become paralyzed to seeking help. Because you know, there are no answers. Your normal becomes more limited each week, each month and each year. I've been blogging as long as I've had this disease and it shocks me that I was able to write as long as I could. If you look through my archives you'll notice a change in post quantity through my recent years in treatment but not during the years of disease progression. I've learned that treating the disease can be harder than disease itself, but not treating is not a long term solution as the disease eventually becomes unbearable.
During those years untreated and the disease progressed, it was an enormous struggle for me to find words and compose sentences (abnormally so since my vocation was in writing). But finding humor in my own life and my dogs' lives and sharing it with my readers was a great coping mechanism. It became normal for me to use story telling as way to forget there was something gravely wrong with me that nobody could explain.
As an athlete and dedicated yoga practitioner, I'd been accustomed to handling many types and levels of pain and treating it as normal. I'd been used to pushing my edge safely. As the disease took over my body, I could no longer do "normal" athletic things. I had severe pain in areas of my body that were once strong and flexible for no apparent reason. I couldn’t even get out of bed without major support of a wall or table to help me. I'm a bright person---normally. I knew that his pain was far from normal aches and pains of physical activity. But Lyme, as many esteemed physicians on the forefront of this disease research will assert, quite literally dumbs you down and keeps you from making the important connections. For years, I tried to push through the pain as an athlete would normally do, until it became so overwhelming that it was nothing short of agony to simply lay on my yoga mat.
As diagnosis and treatment began, "normal" took on yet another definition. For the next two years, life was no longer defined by limits but by what little I had to do just to get through the day. "Normal" for me was spending the day in bed or on the sofa, next to my green bucket for cookie-tossing emergencies. It was quite a big change for a person so energetic, physical and athletic. Where once I looked at anyone taking enormous amounts of pills to live as freaky-deaky, normal for me became preparing 3 pill boxes of 50-70 pills per day to fight the infections. Normal for me became hooking up to a daily IV and expecting to crash shortly after my infusion--because damn they always hit me like a ton of bricks.
Singer Debbie Gibson remarked that she never liked describing her experience with Lyme Disease as a battle but as something she was “over coming.” I have to respectfully disagree with that sentiment. Lyme Disease is very much a battle and your body is the battle ground. If Lyme doesn't completely destroy your organs, nerves or digestive system, then certainly the drugs it requires to eradicate it, will. I can certainly understand why antibiotics are not an option for some Lymies. They are quite intolerable. When I consider how much my body can withstand in treatment, it leaves me in awe.
Winning the Lyme war takes a collosal effort from every angle, physically, mentally and emotionally. It's shocking, yet oddly comforting to hear from more than one person who's fought both Lyme Disease and cancer, that Lyme was always the harder to fight and more terrifying. I have to wonder if Lyme feels worse than cancer for those who've battled and won both, because Lyme is so systemic, invading every area of your body while cancer or other diseases can be limited to one area or bodily system. My own battle is nowhere near as severe as other Lymie's battles. Every time I read about Real Housewives’ actress, Yolanda Foster's relapse, it scares the hell out of me of what recovery really has in store for me.
As I move into the New Year, I feel better than I felt in 10 years, and yet still not "normal." Life is now defined by the hurdles I'm overcoming and progress I've made. My doctors predict that I'll be off all meds by summer. I want desperately to be done with the meds part of all of this, yet I’m terrified to go off them. Even after going off the meds, I still won’t be done with Lyme. My new normal will be acutely watching daily and weekly for any symptoms to arise that may indicate relapse. I will always wonder, "did I kill it all," or "did I kill enough of it?"
I’m proud of the accomplishments I’ve made through treatment. I’m eternally grateful to the medical team who’ve gotten me this far. The headaches, migraines, tremors and twitches are gone. I have a bit of energy back and I can walk around the house hooked up to the IV and do small chores. I don't spend my days in bed but I still need several hours of downtime if I've had a busy day. I even retired the green bucket back to the laundry room, where it belongs. Yet, I continue to misplace multiple items daily, lose focus on tasks and still have incidents like placing the ice cream in the refrigerator. Yes, these things happen to the normal person. But not at my rate. I sometimes take 4 hours to make a dinner when it should take 90 minutes, tops.
Believe it or not, these are all a step up from the Lyme-brain incidents I’ve had this year such as, running a red light, misunderstanding basic road signs, and forgetting that I was driving an automatic only to hit my brake like it was a clutch. I swear Internet, I could write a book about the crazy shit I did with Lyme Brain, but it would still pale in comparison to the stories I hear in the waiting room at my doctor's office.
Sometimes I think I'm functioning more normally. Thankfully, I still have Mr. Wild Dingo to be brutally honest in terms what normal looks like. Recently, I offered to make a one-page web site for him. I've been struggling with it for days.
"Before Lyme, you could do this in an hour," he tells me, like it doesn't even occur to me.
I'm still spacy, cognitively slow and my insomnia is much better. Only 20% of my nights are sleepless --as opposed to 80% sleepless nights that was my normal amount for years. I'm getting closer. I can listen to most music again, but there is still a variety that will send me into a tailspin. I really do miss the Cowboy Junkies but that high pitched harmonica is no match for Bartonella still in my brain.
I have no idea what my new normal in recovery will look like. But I'm placing odds that it will be a hell-of-a-lot better than what it was pre-treatment and during treatment!
Happy New Year Readers! May it be filled with wonderfully normal goodness!
This Side of Normal
Fear of going off medication is common, but so is the joy of being off medication! Once you cross that threshold, you will be on an uplifting journey of building back your physical strength and cognitive function. You'll need to make peace with the 'new you' each step of the way, as things may sometimes not progress as quickly as you would like!
This piece, as all of your writings on chronic illness, hits home. Isn't it crazy what we pushed ourselves through when undiagnosed, hoping we'd feel better the next day? If someone where to magically feel the way I did on some days, they would have driven themselves to the hospital! You are right, you keep adjusting to and accepting the new low. You speak for everyone that has ever endured a long term medical struggle.
But things for you are turning around and I am cheering you on! Cannot wait to read an update from you that says, "I've had a productive, happy and comfortable week - and didn't think about being sick once".
I'm glad that you're feeling upbeat and optimistic. Having been through some medical trials myself, I'm glad that you're calling it your "new normal". In my experience, these things change you forever - not necessarily in bad ways... In any case, I'm still thinking of you, hoping that you find your new normal before too long.
I hope your new normal finds you becoming comfortable in your own skin again, even if things have changed. I've missed your voice on the blog, but knew you were dealing with tough things. We're hoping you, Mr. WD, Loki and Juno will be back to bring us tales of adventure sometime this year!
Thanks again for honestly sharing your journey through such a nightmare. I'm so glad you were finally diagnosed and are getting treated, and that the meds will be over come summer! Since I live close by, please don't hesitate to call if you need anything. I mean it. 408-307-4071
This sounds like cautious optimism...our paws continue to be crossed!