What does it feel like to have the first month of treatment in the books? Bittersweet. Although I’ve actually felt better than expected; having days where physically speaking, I feel better than I have since 2015. This post really isn’t about the physical symptoms though.
These past four weeks have also been difficult, in March when we finally had the diagnosis, we knew what was causing this excruciating pain, extreme weakness and many other symptoms that weren’t allowing me to leave the house, and most days the bed. We finally knew the cause and could focus on moving forward. Now that we’re on the road to recovery, I’m realizing I don’t know how long and bumpy this road will be. Will I break the odds, recovering sooner than expected? How sick was too sick? What is the threshold before you get lumped into the less vs. more serious case of Lyme Disease? I’m quite certain that if it took another 6-8 months before finding out the cause, I’d have been bound to my bed or a wheel chair. Sometimes it isn’t until we look backwards that we finally gain some perspective. I was sick. Really sick. I probably still am.
So, even though I’ve been feeling a little better over all in my first month of treatment, I also find myself feeling suddenly isolated. Maybe it is going back to the beginning of the year, when January through to March the pain was so surreal that I didn’t have time to think about anything else because that kind of pain is so consuming. The only way out is through; and I quite literally breathed my way out of those months. One breath. Then another. Long deep inhales matched with long slow exhales kept my head above water. Don’t get me wrong, I’ve had the most amazing, understanding, accommodating husband, friends and family that I could ever ask for. I’ve had tremendous support from our community too. Despite all of this, it is still bound to get lonely.
It feels like there are worms crawling in my feet,
My feet feel like cement,
My muscles feel like they are slowly turning to concrete,
There is burning, searing, stabbing pain all over my body,
My body aches so deeply, it feels like my bones are slowly breaking,
The space between my vertebra feels so swollen I can’t sit straight,
I can’t sit or stand up on my own,
I walk into walls and doorways,
I can’t lift my head up,
I can’t brush my own teeth,
My stomach is so swollen, it looks like I am 6 months pregnant,
It hurts when I eat,
It feels like my esophagus has stopped moving food down into my stomach,
I’m choking on food and medication,
It hurts to breath,
My ribs aren’t expanding when I breath in,
The space between my ribs hurts,
I can’t catch my breath – even though I’m not moving,
My neck is so stiff, I physically cannot move it from one side to the other,
My face twitches uncontrollably,
My arms, head and legs flail out for no apparent reason,
It feels like everything is a dream, not reality, it is like being drunk all day,
I forget how to spell,
I forget what words to use,
My chest hurts and my heart starts racing at any given time,
I keep falling asleep everywhere,
I have large lumps that grow in my wrist,
There is an IV line coming out of my chest, and the rest of it basically leads to my heart.
I’m really not complaining. These are just the things I’ve said and felt, countless times. Some of you can relate. But not everyone, and likely not to all of it at once… and from time to time – it gets scary and lonely. I feel like I sound crazy when I try to describe how I feel; I also don’t want to tell you how I feel because 1) I don’t want to complain, and 2) I feel this ever-pressing need to be the tough kid. If you ask how I am and I say, “I’m ok” – you can bet it is a lie. I don’t’ want to call myself a liar, so let’s just say that I’ve become a really great actress.
I’ve also become very patient. More patient than I knew I could be. Right now my biggest question for the universe is how long this will last. How long will I have a central line and be on IV antibiotics? Well, as long as it is necessary. Sometimes we don’t get all of the answers at once. I know there are critics out there, but I believe this is working. I believe in my LLMD and his years of experience in infectious diseases that led up to him specializing in Lyme Disease. So, not only do I have more patience than I thought possible, I also have a lot of faith in the things that are uncertain.
This disease has a stigma though. My advocacy efforts and transparency put me in the public eye, which leaves room for judgment and criticism. I’ve received both from friends, doctors and strangers. I am uneasy when I say that I have Lyme Disease to someone new, I wonder if they’re going to look me over from head to toe and tell me, “well, you don’t look sick!”
I am worried for the next time I find myself in the ER; will the on-call doctor look at me and tell me I don’t have Lyme Disease and that I am endangering myself by being on IV antibiotics? Maybe the doctor will say it is in my head? Maybe they will think it is simply a case of rheumatoid arthritis, maybe MS or ALS. Maybe it is just a virus that is lasting an exceptionally long time? I’ve been told all of these and many, many more. And believe me, the longer you’ve been sick, the more opinions and diagnosis’s you get, the harder it gets. There are times when medicine is based on our best educated guess. Science doesn’t just show up when we need it with long term human studies that answer all of our questions. And yes, I’ve even chosen if and when to go to ER based on the doctor who is working. It is a sad truth, but it happens and unless my life is in serious jeopardy, I’ll continue to do this. The doctor-patient relationship and interactions influence care outcomes, for this – I am also extremely lucky to have a family doctor who I’ve always felt very comfortable with, and never judged by. I get to be a participating member in my care, this is important to me.
I really just want to be healthy again. I’d love to go for a walk. Hopefully I’ll run again, and one day be able to lift both arms over my head without it hurting.
One day I will. We just don’t know when yet. I keep reminding myself of something I was told to use; a mantra:
I’ve forgotten my past,
I accept my present,
I will embrace my future.
It is really easy to lose sight. It’s easy to relapse into old patterns and behaviours when life gets hard. Maybe it would be easier to feel defeated when life throws you a huge curve ball that hits you in the face and knocks your teeth loose?
I refuse to feel that way. But I’m also not full of super-human emotions. It gets hard for me too; despite my best efforts. I am beyond thankful, and I’ll never find the right words to express my gratitude to my husband, my family, friends and community. Everyone’s support reminds me to keep breathing, to keep my head above water and to push forward. The compassion we’ve received is heart-warming. I have a stack of get-well cards so thick an elastic doesn’t hold them together. Many of these are from strangers, or people I don’t know that well. The words everyone has written have struck us deeply. From the bottom of my heart – thank you – the encouragement gets us through the criticism and judgement. I need to remember this the most when things get difficult.
So, for now – I accept where I am and I embrace what is in my future. And I breathe. Long, deep inhales and long, slow exhales. Over and over until the storm inside settles.