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
- 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
- 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
- Muscle pain
- Joint pain
- Pain all over/migrating
- Worse vision
- Eye pain
- Confusion/forgetfulness/memory loss
- 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
- 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.