What you learn living with chronic illness

I’ve been trying to come up with a way to express to the people who love me what it’s really like to live with chronic lyme disease but I’m at a loss. How can I possibly explain to a healthy person what it’s like to live in a body that is no longer my own? To mourn not only the life you once had but also the future you had been working so hard towards? And even if I could, so few would want to hear it. The unfortunate truth is that most people want to live in a reality of their choosing and a friend or loved one being chronically ill doesn’t fit well into their picture frame so they crop it out, leaving the ill behind.

As much as this hurts – and believe me, there is no pain like it – if you can find a way to keep your heart open those holes will start to fill with new friends, ones who have the courage and worth to stay around through your illness and who see that you are not your disease. And they are there to remind you of this when you too, find yourself forgetting.

You will mourn the life you once had and the life you were striving for, deeper and greater than you ever thought possible It will feel as if your body has died while your soul is screaming and clawing to escape, leaving you wishing with everything you have, to be able to do all of the things you desire to do. To live the way you desire to live, and for all of the abilities that the average person doesn’t even have to think about. In this you will find gratitude for so many simple things that you also had taken for granted in the past.

The lyme bacteria is a spirochette that corkscrews deep into your muscles, tissues, organs, bones and brain, where it protexts itself inside of an antibiotic resistant shell called biofilm. Here it rests, hiding for years even after treatment just waiting for its opportunity to strike again.

While some are hiding, other are screwing deep into every inch of your body causing joint pain, fatigue, muscle aches and spasms, eye pain, shakes, blurred vision, weakness, nerve pain, numbness, severe bloating and cramping, sciatica, noise sensitivity, feeling of general overwhelm within body for no reason, weakness, hair loss, fatigue, dizziness, heart palpitations, trouble concentration, internal vibrations, headaches, vision changes, memory loss, poor balance, night sweats, cold sweats, hot flashes, chills, rashes, dots in vision, disrupted sleep, bruising, jaw stiffness and pain, ulcer pain, vision processing issues, collapsing, aphasia, unexplained weight gain, hallucinations, psychosis, panic attacks, suicidal thoughts, migraines and much more. Lyme disease being the “great imitator”, often looks like MS, Parkinsons, ALS, Lupus, Rheumatoid Arthritis, Autism Spectrum Disorders, ADD/ADHD, Alzheimers, Dementia, TMJ, IBS, Chronic Fatigue Syndrome, Central Sensitivity Syndrome, Fibromyalgia, Depression, Anxiety, Panic Disorder, Bi-Polar Disorder, Schizophrenia and Psychosis.

Healthy people tend to think you’re a drama queen or a hypochondriac because they can’t understand how you can be in so much pain and have so many different ailments or diagnosis’ and still look fine on the outside. You learn to live in more pain than they can imagine, and you learn to appear like an average person on the outside while everything feels like its shutting down on the inside. It’s not healthy people’s fault that they can’t see it, so you learn to ignore their comments about your so-called-drama or hypochondria, or when they use these tactics to downplay your symptoms. Even the closest to you will do this. You will be shocked and hurt and still will learn to let it go because you can’t imagine possibly losing more people than you already have. Also, chances are you don’t have the energy it takes to stand up for yourself anyways and by now you know that it is impossible to explain to someone what they cannot see or feel for themselves.

You will start to embrace every joyous moment and take every opportunity to spread love and remind people that you love them because you know that even though you still look fine on the outside, inside the bacteria can be drilling into your heart, liver, kidneys, and every other organ, trying to shut them down completely. You’re very aware that there is always a possibility of going into organ failure. You also know that it could be attacking the parts of your brain that control communication and you could be left unable to speak, write, see, hear, etc. Suddenly it is more important than ever that those you care about, admire, aspire to be, respect, trust, all know how you feel and that the world knows who you really are before you’re unable to show it. Chances are you’ve already lost the ability to communicate at least once in your lyme journey and you never know when it might happen again and for how long.

Typical stressful life events that an average person could cope with actually cause you intense physical reactions and can send you backwards in your treatment – or if you are in remission, can send you back to being unwell. You start to resent the saying “what doesn’t kill you makes you stronger,” and learn to fight back the urge to tell people who say that to you during these stressful events that no actually, in your case it doesn’t make you stronger it makes you weaker, giving the bacteria their opening to attack, and that yes actually, it could kill you.

Every single morning you wake up in pain. Your legs feel like they have cinder blocks strapped to them. Your throat feels as though its been clawed. Even if you did manage to sleep through the pain you wake up feeling as though you just completed a marathon that you never trained for. Every inch of your body filled with overwhelming fatigue and aches. Feelings that were once so foreign are now the norm.

Although sometimes you are ravenous and others you can’t eat a thing without vomiting, you’ve likely had a lot of unexplained weight loss or gain. It doesn’t seem to matter how much or how little you eat, this doesn’t change. If you aren’t too nauseous to eat you’re probably too fatigued or weak to cook. Or your joints hurt too much to chop vegetables. Or you’re afraid to turn on the oven in case you forget and leave it on overnight – again.

You forget things, alot. And people around you will try to say that everyone forgets things, but you know yourself and you know that its abnormal. It feels as though someone has gone through your brain like a filing cabinet and plucked out hundreds of random files. You start to get good at re-routing your brain to remember names, and even when no one notices it never feels less embarrassing and becomes one more daily reminder that you are not the person you were or want to be.

Sometime amidst each day’s confusion you have to juggle your meds. There will be hundreds of pills and tinctures per week, each with a different set of guidelines. With food, without food, together, alone, with dairy, without dairy, with 8oz of water, with 2oz of water, right before bed, don’t forget you can’t lay down for 15 minutes after taking, and more. I’ve only been on treatment for 3 months and I’m on 164 pills per week. So far we aren’t taking anything away, only adding. 164 pills per week just to function like a below-average human being. Just to be able to work one job part time when I once thrived with 2 businesses and 2 volunteer boards. You will also learn to carefully respond when well-intentioned friends come up with the idea that the meds that are keeping you upright must be causing your symptoms.

There will be times when treatment will make you so unbelievably ill that you pray to whomever you pray to to take you, and yet when you’re off treatment you’re so disabled that you can’t even recognize yourself. On top of all of this you will undoubtedly experience overwhelming guilt for all of the things that you can’t do, the events you miss,  and towards the people who have to care for you.

I hope that you won’t allow this disease to kill your spirit. That you keep your heart open to the incredible people who will undoubtedly appear in your life to help you through. That you will reach out and find other lyme warriors who will help you understand what is happening to you. That you won’t let condescending family, friends and doctors tear you down. That you will learn self-care and forgiveness. Most of all I hope that you too, will find gratitude and love and allow them to guide you through your journey, and that you never give up hope.

 

**Please note that I will have to come back and edit this later and may add to it, writing it has taken me a couple of days and typing it up took all the energy that I had for tonight. So although it is a first draft, I really just wanted to get it up!

Why your sick friends don’t “just call”.

Whenever I run into friends and they ask me about lyme and how I’m doing with it all, they will say “well just call me!” or “why haven’t you called me?”, “I’ll get you out of the house, I’ll come visit!”.

We don’t call you because on our bad days we can’t even fathom holding a conversation. Some people with late stage lyme disease can’t even remember how to dial the phone, let alone call you themselves. I am a lucky one who can still do daily tasks and dial a phone, but on my bad days I’m much too sick to try to hold a conversation.

We don’t call you because it’s really hard to make plans when we don’t know how we’ll feel next week, or tomorrow, or 3 hours from now and we don’t want to let you down. Also, if I can barely walk, or am struggling to hold a conversation, I don’t want to be seen that vulnerable.

We don’t call you because we don’t know what to say. Our days are spent sleeping, working if we’re lucky, or with doctors, medication schedules, treatments, rest periods, and symptom management. We know that just because our lives have had to slow down doesn’t mean yours has. We don’t want to bog you down or scare you off with our current state, and when you ask us how we are, we’re tired of pretending we’re okay.

We don’t call you because when we do have the energy to talk, we’re thinking about how to get the week’s worth of dishes and laundry and house work done that has piled up over all of the days we were unwell. We know we need to do it because we don’t know when we’ll be physically well enough to do it again. We’re making soup for the week because we know there will be days we can barely eat, let alone cook, and if we don’t do it now we might not get the chance. We’re preparing, because we know our good days are limited and important, and we don’t know when we’ll feel well enough to go to the grocery store again.

We don’t call because we don’t want to burden you. We’re happy that you’re happy and healthy, but sometimes it hurts too much to see life moving forward for everyone else when we’re drowning in darkness.

Just because we don’t call you doesn’t mean we don’t need you. We need you to check in sometimes, to make plans, knowing that we may have to cancel at the last minute even though we hope with everything we have that we don’t. We need you to come by, and when you do, our houses will be messy, and we will be embarrassed. We will not be near the host or hostess that we’d like to be, and we will feel guilty for that. We need you to come by anyways, with no expectations.

I have one friend who still visits regularly, and a couple others who check in or send food. My good days are still worse than my old bad days, but they’re good nonetheless and they seem to be coming more regularly in the last few days. I know I can’t expect those to last, as this disease is very up and down, but when they do come I hold on tight and enjoy and appreciate them. It’s on those days that I can write, go to dinner, maybe risk a short walk. Catch up on my cleaning and cooking. Sometimes I can even read a book, or go to the grocery store without the fear of collapsing. But if I am on a roll and do too much I pay for it the next several days. On the weekend I slept all day, walked two blocks into town for dinner and a drink, and slept all the next day to pay for it. But it was worth it to have one evening that felt normal. To be able to walk that few blocks into town and have dinner in a noisy restaurant was something to be celebrated.

I long for the days when I could be up at 6am, working out, meal prepping, working 3 jobs, sitting on different volunteer committees. I long for the days when I was ABLE. When I didn’t have to think about whether or not I could handle going to the grocery store that day, when I didn’t have to schedule a lot of rest time so that I’m able to work one job. When I didn’t have to consider whether the noise at a party or a restaurant would cause my central nervous system to flare up, possibly sending me to the ER. I long for the days when I could walk my dog.

At the same time I’m still so grateful. I am grateful for the days, like today, when my head is clear and I can write. I am grateful that I am not bedridden. That I can still work. That my grandma walks my dog for me. That I’ve met so many incredible people who are all living with lyme disease and helping me to navigate this journey. That I have family nearby to help me and support me. That I have a couple of friends who care enough to check in or bring food. That I have one friend who spends countless hours with me in our sweatpants watching netflix when its all I can do, and who forces me out of the house when I’m able, even if its just for a drive. Who walks around the mall with me when I feel like I’m walking so fast but really am walking worse than a 90 year old arthritic woman. Who holds my hand while I sob in the moments or days that I can’t take it anymore.

I know that I have a long road ahead of me. But I’ve had a few clearer days recently and it makes me feel like I’m starting to see the light. I know that its too soon to say that and that I can’t count on it to last, because worse days may come before the good, but I know that I am in good hands and will one day get healthy again. A year sounds like a long time, and many people have to have several years of treatment before they’re better, but I spent the last year only getting sicker and sicker with no answers or end in sight. At least now we know some of what we’re fighting. We know the road may take some turns but we’re on the right path. And whether they last or not, I am going to hold on tight to these good days and appreciate them for everything they’re worth.

How to get medical help with the red-flag of mental illness in your file

It’s no secret that I have become friends with my mental illnesses. I have denied them, hid them, fought them, accepted them, lived with them, shared them and embraced them. I have learned the things that I need to do in order for them to be my friend rather than my enemy. We now work together to allow me to live a happy, thriving life, and I use them to help so many other people in the process. They are a part of me just like any other part of me. I am comfortable with them and stronger than them; wiser than them, and they rarely try to fight me anymore.

Which is why I find the way that I am treated in the emergency room so offensive.

Someone warned me recently that if the ER sends me for a psychiatric evaluation it will put a big red flag in my chart. I told her, “Don’t worry. That big red flag has been in my chart for as long as I can remember. I’m used to it.”

On August 6th I collapsed in my home where I live alone. Thankfully I didn’t loose consciousness and was able to protect my head from slamming into the hard tile floor. My parents were out of town so I called my 77 year old grandma, sobbing. She rushed to my home only a few blocks from hers, and luckily she has a key. She put me over her back and practically carried me to the car where she took me to Delta Hospital Emergency.

I’m sure its no surprise to anyone that its not easy for a 77 year old woman to carry most of the weight of a 25 year old, so when we arrived she made me wait at the car while she got me a wheel chair, scared that I might collapse again and bring her down with me. This seems to be a common symptom for me these days – my knees or ankles giving out – usually I am able to catch myself with my other leg or grab onto something for support but once in a while I can’t, or both legs go out at the same time.

She wheeled me into the ER, got me checked in, sat with me a bit, and then left to get a newspaper. Of course the moment she left was the moment that the nurse began calling my name to take me in from the waiting room.

“Denise Askin… Denise Askin!?” the nurse kept calling as I waved my arms from the wheelchair.

“I’m over here,” I kept responding.

“DENISE ASKIN!!!” she shouts.

“I’m in a wheelchair,” I call back while flailing my arms in hopes she will come to help me.

When she finally approaches me she looks at me with disgust and without trying to hide the disgust or annoyance in her voice she asks me, “Well can you walk?!”

“Uh, umm, uh,” I stutter, “well, umm, I’m here because I collapsed.”

“Well did you walk to the car to get here?” she practically spits at me.

“Uhhh with a lot of help,” I whisper in shock.

“Well come on then!”

I think shes going to help me up, maybe take my arm to steady me. Instead she turns and walks toward the doors, me shuffling unsteadily behind her. As she approaches the doors, me struggling 10 steps behind,  she turns to tell me to hurry up.

Embarrassed, degraded, angry and sad, I sit in the line of chairs where you wait to be seen by a doctor. Over 3 hours go by without a doctor or a nurse even speaking to me. This is fine, I understand I was not high priority, I was managing my pain and sitting quietly with my grandma. I wasn’t gushing blood or on my death bed. I understood this and continued to wait patiently, grateful for my cell phone distraction and the company of my grandma.

Eventually I decided to try to walk and get a cup of water. I shuffle to the nurses station and begin to ask a nurse where the water station was. “Are you Denise Askin?” she asks.

“Yes.”

“Here, I have your ativan for you.”

I look in her little paper cup and see a large, white ativan that she seems to think I need to take. I recognise it with fear, as I’ve only ever taken that large of dose once before at the dentist and it made me so high that I had to phone back the next day to make sure I paid my bill.

“I didn’t ask for ativan,” I tell her, confused.

“The doctor wants you to take it. Just put it under your tongue,” she responds matter-of-factly.

At this point I’m very confused as to why this is being given to me, and I ask her why the doctor wants me to take it and how I can possibly be prescribed ativan without any doctor or nurse even speaking to me first. Is that even legal? I don’t think it could possibly be ethical. Then another nurse comes up behind me, “Denise? We’re ready to run some tests on you,” then to the first nurse, “did you give her her ativan?”.

“She’s refusing to take it.” the nurse replies.

Great. Now I’m crazy and defiant.

The second nurse encourages me to take the pill and still cannot tell me why or how I’ve been prescribed it in the first place. “Do I look like I’m having a panic attack to you?” I finally ask.

“Well, no…” she responds.

“Great. Then if I start to have a panic attack I’ll take it. But for now I am not anxious and I’d like to be able to explain to the doctor what’s wrong before being drugged.”

And guess what – I never did have a panic attack or get anxious during this visit, and my blood tests showed that my eosinophil levels were abnormally high. This is the white blood cell that fights infection. Imagine that. Someone with a history of mental illness coming to the hospital for something besides mental illness. Crazy right? Unfortunately, when you have that big red flag in your file, it is generally assumed that every time you walk into the hospital or doctors office, there is nothing wrong in your body and everything wrong in your head. You will never be treated with the same dignity and respect as someone who does not have that big red flag. Anyone with that big red flag will always have to fight harder for the same care and respect that someone without it receives. This is not just my opinion, ask anybody else who has it and I’m sure they’ll tell you the same – I know I’ve asked many people with history of mental illness and they’ve all said the same to me.

 

Tuesday I started to feel confused. Then I lost my ability to speak. I could see the words right there in the front of my mind, but I could not for the life of me figure out how to get those words from my brain to my mouth. And then I got a sharp shooting pain through the left side of my head and my legs went out from underneath me. Suddenly I was on the floor.

On our way to the emergency room I wrote on a napkin to my mom, “Do not mention Lyme”. Because my mom has sat in on Lyme support group meetings with me and also is in my online support group, she has seen everybody else’s warnings to not mention Lyme disease in Canada to an MD or in an emergency room because all they will do is send you for a psychiatric evaluation. Unfortunately my dad was not aware of this, and when the nurse was in asking questions he did what anyone unknowingly would have done, and said, “but I thought it was Lyme disease?”. And that was that. The nurse went on to explain that Lyme disease does not exist here, and I wrote down on a piece of paper (still unable to verbalise), “Canada does not recognise chronic or late stage Lyme.” The nurse read this and went on to tell us that the US doesn’t recognise it either. I know is not true because that is where my blood gets sent to and I have met several people through support groups who go to the states for their treatment. However, I still couldn’t speak and I didn’t have the energy to try to argue it so I let her continue to tell me that they would do their best to help with the immediate situation but would not be getting to the core of what’s deteriorating my body and brain.

After about 4 frustrating hours of trying to be able to get the words from my brain to come out of my mouth, my pain started to flare up. It started in my left knee, then trailed down my leg and into my foot, spreading through each of my joints and into my eyes. Then all of a sudden my head, neck, eyes, and ear pain shot through the roof. I went from calmly laying in the hospital bed to sobbing and kicking because the pain was so intense. I’m unsure of how long this went on for before suddenly I felt something in my head clear and I said “I think I can speak again,” and just like that the words didn’t get trapped in the front of my brain anymore and instead flowed freely out of my mouth like I had expected them to all along. So now my inability to verbalise was gone, replaced with unbearable pain.

The next bit is a blur and I’m really unsure of how much time passed but they hooked me up to an IV and filled me with fluid and pain killers. I’m not sure how long I slept for, it may have only been 20 minutes, but it was the best rest I’ve had in a significantly long time. It wasn’t until I had the relief from the IV pain killers that I realised just how much pain I’ve been living with for so long. I think after a while it just becomes the norm and maybe we aren’t always aware of just how much pain our bodies are trying to function with until its gone.

Sometime during my rest the resident who had been tending to me came in with a doctor who I hadn’t seen before. This doctor then told me that there was nothing wrong with me physically, and to please wait for a call for a psychiatric evaluation. He then went on to explain that Lyme disease doesn’t exist here, and that even if it did, he has worked in Lyme-endemic areas before and that the main symptoms are joint pain and a rash, and that it wouldn’t present itself in this way. Well, that’s funny, because I have an online support group of 1700 other people in Canada who have the same symptoms as I do as well as an in-person support group that is run by an MD, who also agrees with the rest of us. My mom even posted in the online support group when I went into the hospital to see if anyone else has ever lost the ability to speak or experienced anything that I was experiencing at the time. Many people responded to her thread saying that yes, this is something that has happened to them and that usually the only thing to do is sleep it off. One woman even commented that she lost her ability to speak for 3 months.

“Actually, there is a public health map available online that shows that we live in a Lyme-endemic area here in Ladner, BC,” I told the doctor.

“Yes, well, we have found ticks here with the Lyme bacteria, however you cannot get Lyme disease here.” he responded.

Shocked at the blatant contradiction in his single sentence I gave up and let him go on about how someone would be calling me in the next few days to set up my psych evaluation.

I could skip the evaluation, but that, I’m sure, would only add fuel to their fire and give them more reason to not treat me next time. I have no reason to fear the evaluation either, so therefore I will go – and when I do go, and pass it, what will the doctors do then when they no longer have mental illness as their scape goat? Don’t get me wrong – I understand why they’re sending me there. I have a history of mental illness, the Canadian testing for Lyme is not accurate (they only test for antibodies which many people stop producing after being sick for a long time, please watch a short video here, this video is based in Europe but explains really well what is also happening in Canada and why we can’t get proper treatment and testing here) and they can’t or won’t figure out whats wrong with me. So therefore, they have to pass me off onto someone, and mental illness is the easiest scape goat. I also appreciate and respect the fact that they do need to rule out mental illness, and although my family doctor and I know that this is not due to mental illness, the ER doesn’t necessarily know that and still has to cover their asses, and since Delta Hospital does not have an MRI machine and I’m already waiting for a neurologist appointment that was marked urgent by one of their internists, checking my mental wellness is all that’s left for them to do.

What’s ironic is that 12 hours after leaving the ER I got a phone call to see if I could see a psychiatrist that day! In all of my years battling mental health I don’t think I had ever gotten in to see a mental health professional that fast. I battled long wait lists and can remember phoning and phoning different agency’s with no response and begging to get in to see someone quicker. When I was in the thick of my fight with mental illness I would have given anything to see a psychiatrist that quickly and get on the road to recovery. If that’s what I was battling now I would have dropped everything to be able to get to that appointment on Wednesday. However since its not, I wasn’t willing to miss work for it and will be going next week instead.

Meanwhile, the neurologist referral that was marked urgent and sent to Jim Pattison is what I really need right now. My Internist assured me that I would be getting in very quickly due to its urgent nature, and yet when I phoned to check on the timeline, the staff at Jim Pattison informed me that although it was marked urgent by the referring Internist, the doctors there deemed it routine, and I had been put onto a year long wait-list.

I know that a lot of people feel strongly that our medical system is the best in the world, but I have to respectfully disagree. I fought for years to receive the mental health treatments that I needed, and now that they’re not what I need they’re the only thing the doctors here are willing to give me.

Threads of Beautiful Lessons

Its funny how things change, and the threads of beautiful lessons that can be found, woven through seemingly utter chaos and pain.

I have time trackers on my computer from less than a year ago, documenting every minute of my day to see where I could squeeze in more productivity. Every second of my life was scheduled in attempt to do better, be better, grow my businesses faster. It was all just a coping mechanism to try to control the direction of my life while my home was in utter destruction. I was trying to manage it all – a home, a partner, his kids, two businesses, a third job, covering all the bills, leaving said relationship, starting over, keeping my businesses growing – and the only way to keep myself sane was to incessantly schedule everything. But trying to control my life and everything around me was like trying to rein in a tornado. I see that now, as I see that life has a funny way of showing us what we are doing wrong, as I’m currently struggling to schedule anything at all. Not for lack of time, will or drive, but for lack of health.

I went from having an unhealthy amount of structure, to no structure at all.

I feel like one day looked like this (random day copied from my time tracker):

6-6:15 – bathroom,  dog in crate, set up coffee

6:15-7:10 – meditation, personal development, video uploaded for team, 1 post, fed dog and let out, gratitude journal

7:10-7:40 – made breakfast

7:40-8:30 – ate breakfast outside while checked in to trainings and notifications, posted to groups,

8:30-9:40 – workout

9:40-10:00 – take care of dog, sit outside and create posts about workout

10:00-11:00 – shower, hair, makeup, dressed for salon, laundry,

11:00-11:20 – put away dishes, tidied up, made shake, set up work space

11:20 – 12:00 – power hour

12:00-1:00 – visit with friend and family

1:00-1:20 – filled out meal planner and made lunch, responded to a couple messages

1:20-1:40 – took care of dog, packed stuff into my car, organized for work

1:40-5:00 – work at salon

5:00-5:15 – had a break walked into town to run an errand

5:15-8:30 – worked at salon

8:30-9:00 – took care of dog, ate dinner

9:00-10:00 – started filling out mandatory questionnaires for before my specialist appt which is next week

10:00 – bed

And overnight it turned to this:

7:30 – wake up, absorb the pain streaming through my legs and body, tell my body to open my eyes, figure out what day it is, lay in bed adjusting to the pain.

7:45 – get up, feed dog, realize how difficult it is to function, take medicine, wait 10 minutes before I can lay back down, and go back to bed.

10 – attempt to get up again. Self-talk my way to the kitchen while I debate if my stomach is up for eating, and if it is, what it can stomach. Realize that I have no energy to cook anyways and it hurts too much to stand, and make a shake or toast instead and go back to the couch.

11 or 12 or 1 or whenever happens to be an hour before my day at the salon starts I begin the self-talking again in order to shuffle to the shower, because my legs still aren’t ready for the day.

If it’s a day that I have to wash my hair (every second day) then I don’t wear makeup, because I can only manage shampoo and blowdry OR makeup, not both. And if it’s a day off then probably neither – although if it’s a day off I’m probably still on the couch and it doesn’t matter.

I put together some yogurt and an apple, and if I’m lucky anything else that I feel I can stomach that day and head to the salon where I spend the day standing, forcing a smile, listening, sympathizing, and being grateful for my incredible clientele, all while pretending that I’m not in pain from head to toe, the walls are not closing in on me, and I don’t have electric shocks shooting through my skull.

8pm – I come home, I feed the dog, I go to bed.

I’m so tired of fighting every day. Of having to put a positive spin on every shitty symptom and flare up and loss. Of knowing each morning before I have to get ready that in 15 minutes I will wipe my tears, shuffle to the shower through the pain, get dressed, go to physio or whatever doctor appointment I have and then put on a happy face for 8 hours of styling people’s hair. I know that I will keep fighting because it’s the only choice I have. But this sucks. And I’m tired of fighting. I’m tired of pep-talking my way through each day and pretending while I smile at clients and friends that I don’t have electric shocks randomly slicing through my head or that the smell of the chemicals doesn’t make my head feel like it’s going to burst or that I don’t feel like vomiting or that I didn’t just talk myself through piercing pains through my chest or down my arm or legs going weak. Or that I don’t feel like I am watching the walls closing in around me as I colour my clients hair.

I don’t schedule my life anymore because I simply don’t know what I’ll be able to do when. This past Sunday I had an awesome day. I cooked, I cleaned, I went to the market, I visited my brother and his step-daughter, I had a friend over, I lived like I normally would. Monday, I crashed. I spent the rest of the week slipping out of the salon between clients to cry and trying to figure out how I’ll make my life work if I become unable to work.

I miss when every day was like Sunday.

You see when life gets rough, or when extra expenses arise (which they sure do when the only available treatment is private!), its in my nature to work harder and longer. To schedule every second of my day so that I can be the best, most efficient, most productive person I possibly can be. To organize every penny I spend into a spreadsheet so that I can most effectively see where I can cut and save. To take control over every aspect of my life that I can, to power through the storm and come out stronger on the other side.

Life has now hit me with a giant corn maze in the fall. Its foggy and grey and has no clear route. One has to stumble down many dead ends before they may find the clearing on the other side. And its heavy. It weighs you down more and more as you crawl through the thick, sticky fog until eventually, someone has to carry you the rest of the way.

I don’t like to be carried. So I kept pushing. Even when my body said stop I kept working. Picking up even more shifts in order to cover the piles of medical expenses. Scheduling clients earlier and later than normal, squeezing people in to accommodate them without considering my own needs. And spent the week crumbling more and more as each day went on.

Tonight I finally slowed down and I realised that I’ve been trying to rein in a tornado.

Its funny how things change, and the threads of beautiful lessons that can be found, woven through seemingly utter chaos and pain. And I do believe that there is a twisted, beautiful lesson interwoven here that may stitch up a few wounds. Keep the routines that include self-care. Be flexible. Be kind to yourself. Slow down long enough to see the lessons. Then find a way to adjust, recreate, and continue moving forward.

When I finally find my way out of this maze I will be a new person with new lessons learned and gifts to give. I believe I will be more grateful for every day life. More empathetic to those with chronic physical or neurological illnesses. More able to let go of the negative things and people in life. I believe that when I crawl my way out of this I will live more beautifully. I will be greater than I ever was when I was incessantly scheduling, and I will have more to give back to this world. I will be more forgiving of not only others, but of myself. I may even be able to forgive our distorted medical system; but then again, lets not push it.

Grateful

Less than a year ago by this time in the morning (8:45 am) I would have already completed my meditation, personal development reading, affirmations, to-do list, workout, breakfast, and be sitting at my desk helping all my incredible fitness challengers and coaches prepare for their days.

Today, instead, I am grateful that it’s a nice morning and that I’m able to get myself outside to sit for the 10 minute period after my meds that I’m not allowed to lay down. I’m grateful that I have other coaches helping me run my groups so that I can keep working. As I try to balance out what pills I can and can’t eat with and can and can’t take together I’m grateful that this week I only have 9 to juggle instead of last week’s 15. I’m focusing on how good a day Sunday was and how productive I was able to be instead of on how much I paid for it yesterday and this morning.

I’m focusing on being grateful because I know that no matter how many mornings I wake up in pain or feel like I can’t keep fighting there are so many other people who have it so much worse than I do and I have an incredible life that I worked really hard to create that I have to keep fighting for.

My healthiest to my sickest in 12 months

Last August I was at the healthiest and happiest I’d ever been. I was down a total of 38 pounds, loved my new lifestyle, was eating right and exercising daily. I was stronger both mentally and physically than I’d ever felt before. Although I was super stoked on having arm muscles instead of jiggly wings for the first time in my life, it was so much more than a physical thing. I could officially say I was off of all of my meds, and had overcome my anxiety and depression, and that when anything like that did pop up I was able to cope with it in comfortable, healthy ways.

I felt so at peace with my own self. This was it! I was ready to live the happy, healthy life that I’d always been waiting for!

Then mid August, soon after a trip to Dawson Creek, where I had been visiting family, hanging out with farm animals, riding horses, walking trails, atv-ing etc., I came down with both a sinus infection and bronchitis. At the same time. In the middle of summer. I was going through a highly stressful transition at home and blamed stress for the infections and tried to go on with life, but my body seemed to have other plans for me. Now whether this was when I contracted what caused the sudden and drastic shifts on my life, or if this was simply the trigger for what was already living inside of my body, I may never know.

The following months I knew something was off. I tried going to a naturopath, I continuously told my GP that something was wrong, but my blood tests always came back normal. I started getting numbness in my limbs and fingers and toes, then came sciatica and other electric shock-like nerve pain. I kept telling my mom that it felt like I wasn’t recovering after my workouts like I normally did. I remember telling her once that it was as if even though my brain really liked the more intense workouts that I was doing, my body didn’t. She of course told me that it was just me adjusting to stronger workouts and basically to suck it up, which I did. But I found that couch time was becoming more and more frequent, I was starting to really struggle and I couldn’t figure out why.

Fast-forward to February 2015 and my symptoms had increased to the following:

  •  Bloating and severe cramping in pelvic area
  • Sciatica
  • Found 3 minor disc bulges
  • General feeling of over-whelm in my body
  • Noise sensitivity
  • Weakness in hands, wrists, legs, ankles and feet, both sides
  • Hair thinning from the scalp
  • Exhaustion
  • Dizzyness/lightheaded
  • Heart palpitations
  • Trouble concentrating
  • Electric shock nerve pain
  • Feeling like all my insides are vibrating against my skin
  • Feeling like my eyes are vibrating
  • Feeling like my brain is vibrating
  • Involuntary movements/muscle spasms
  • Shakiness
  • Weak
  • Muscle pain
  • Joint pain
  • Pain all over/migrating
  • Headaches
  • Worse vision
  • Eye pain
  • Confusion/forgetfulness/memory loss
  • Unsteadiness
  • Tingling /pins and needles
  • Muscle fatigue
  • Intense night sweats
  • Intense, bed-soaking night sweats

But my blood tests were all still clear. Finally my doctor told me I had Central Sensitivity Syndrome. Well excuse me but I believed this was a bullshit answer. “WHY do I have CSS? What has CAUSED my CSS?” my doctor was unable to answer. I was put on a 2 year wait list for the Complex Chronic Disease Clinic and basically told to learn to live with it. I continued to get sicker and sicker, and it seemed that no one in the medical industry could or would help me.

As I continued to get sicker, a few people kept mentioning Lyme Disease to me, to which I responded “no one gets Lyme Disease anymore, obviously I don’t have that.” But after several people mentioned it to me I decided I should look up some of the symptoms, and they were all a match. I asked my doctor for the test and he told me that we don’t get Lyme Disease around here, but he would test for the antibodies, which came back negative.

Fast-forward to August 2016 and me at my sickest, adding the following to my symptom list:

New or worsening:

  • Dots in my sight
  • Stomach pains
  • Disrupted sleep
  • Random bruising
  • Heart palpitations
  • Jaw stiffness and pain
  • Tingling pressure sensations in my forehead
  • Eye pain
  • Antsiness in my muscles
  • Extreme upper abdomen pain
  • Weak legs
  • August 6th collapsed
  • Feels like my eyes aren’t processing properly
  • Upset stomach
  • Intense pressure inside of my head, neck and behind my eyes
  • Intense joint pain
  • Knee gives out
  • Pain in the bottom of my foot
  • Intrusive, uncontrollable thoughts
  • Depression
  • Anxiety
  • Panic Attacks

I now know that against popular belief, I live in a Lyme endemic area. I have now met several people in my town and surrounding towns who have Lyme or Chronic-Lyme Disease. I now know that the doctors in Canada do not treat for chronic-lyme out of fear, that the testing in Canada is much less than accurate, and that they cannot read the private testing from the states. That our testing only tests for one antibody, not the disease itself, and that when you’ve been chronically ill for a long time your body stops producing those antibodies and white blood cells that are used to fight the infection. And that even though there is a public health map showing that I live in a Lyme-endemic area, the doctors here refuse to admit that Lyme exists in Canada. I now know that the only way to get properly tested and treated for Lyme Disease in Canada is to find a Lyme-Literate Naturopath (LLND), or, a very rare Lyme-Literate Medical Doctor (LLMD) who has opted out of MSP in order to be able to treat Lyme, or to go to the US to a LLMD there. All of these options are private and expensive and the only option to save your life. I now know that other illnesses such as Fibromyalgia, CSS, Mental Illnesses, Chronic Fatigue Syndrome and many more are often related to Lyme and mis-diagnosed. I have also learned that Dr. Dietrich Klinghardt from the Sopia Institute has stated that in 5 years they have never found an MS, ALS or Parkinsons patient who did not test positive for the same bacteria as Lyme (Borrelia Burgdorferi). I’ve now personally experienced the judgement that can come from both doctors, family and friends when you say you might have Lyme disease, and I now understand why those who suffer with it often suffer in silence.

When I was first battling the idea, and I mean seriously battling, partially because I didn’t believe it could be true and possibly because I feared that it was true, I reached out to a long time friend who I thought would see me through everything and he responded with “obviously you don’t have Lyme don’t be ridiculous”. When I showed him my symptom list, which as you can see was extremely long by summer 2016 when this conversation happened, he responded with “hah, I’ve had each of these symptoms at some time or another, does that mean I suddenly have Lyme Disease too?”. I allowed this judgement to silence me.

As of August 2016 I am now being treated for Lyme and co-infections. This experience has opened my eyes to our health-care system and its life-threatening flaws in a whole new way. It has shown me some of the battles that people with chronic illness fight. It has taught me the lessons of the spoon theory, and the battles of not looking sick. I’ve learned which friends stick close, checking in and supporting me and which ones bail – most will bail. But I’ve been pleasantly surprised with the ones who have stuck around and I will never forget it. No one has seen me at my worst, but I have one friend who has really shown his true colours and seen me worst than anyone but my mom. Although most of our visits are still laughter and fun and a lot of crib games, he’s also sat with me through 30 minute long panic attacks, the panic hangover, severe pain and weakness, met me at my house after emergency room visits, and today spent the entire day with me while my symptoms were so high that I could only stop crying for short periods of time from 9:30am until mid-afternoon, when he dropped me at a fellow Lyme-friend’s house and returned to pick me up, make me toast, cure my head pain with peppermint oil and distract me with a game of crib before taking me home in the evening. This is more than I could ever ask for in a friend and an incredible glimmer of hope when I thought everyone gave up on me. There has been no judgement, no need to defend myself, just friendship, laughter, competition, a lot of Netflix, a safe push to get out and do things when I can, and a shoulder for when there are tears.

I’ll never give up on the friends who appear to have given up on me, because that’s just not who I am. But learning who has the guts to stick around is only one of the many important lessons that I am and will continue to learn on this twisted trail.

As I’ve begun to meet other people who are fighting Lyme, I’ve learned how lucky I am to have found treatment within 1 year of my symptoms progressing, as well as how lucky I am to still be able to work. I am so grateful to work in two jobs that I love surrounded by amazing, incredibly supportive peers and clients. I don’t know how I’d make it if I had to lay in bed all day like some people do; they’ve found the strength to keep going and I’m sure I would too, but I’m so forever grateful that I’ve started treatment before that happened.

I’ve been keeping most of this to myself out of fear. Fear of judgement, fear of what I have yet to learn, but I think most of all, the fear that saying it out loud will make it true. But it is true, and the truth has always set me free. A diagnosis doesn’t have to be a sentence, it can be a relief. A door that leads to a greater understanding and treatment and the ability to heal.

I may struggle for now, and I’ve had to slow down, but I am still working, attending meetings for both of the boards that I sit on, and enjoying as much of life as I can. I am grateful for all that I can still do, and am so looking forward to going into remission and returning to the healthy, happy person full of life that I was last July!

And, thanks to a push from a friend, I am writing again. And I hope to keep going.

Sometimes I may have to crawl, but I’ll never give up.