What Birthdays, Anniversaries and Holidays Look Like With Lyme Disease
It is Lyme Disease Awareness Month, my husband’s birthday month and our anniversary month – yes, these special occasions should be celebrated all month long in my book. However, since beginning my husband’s aggressive Lyme disease treatment protocol, special dates and occasions look a little different.
First let me present some facts:
Lyme disease symptoms change on a daily basis for most – that’s what is atrociously beautiful I guess about the debilitating disease. Those with Lyme joke that if you feel like you’re dying with your symptoms being at an all-time high, don’t worry – tomorrow is a different day, a different set of symptoms. The same goes if you are having a great day with high energy, low pain levels and a clear mind (no brain fog!) where you think, Yes, thank the Lord – I’ve got this sh*t in the bag! Things are looking up! You unfortunately know all too well that tomorrow you could wake up and be unable to get out of bed.
This is a key part in why this brutal disease goes undiagnosed or often misdiagnosed. You go to the doctor saying one day it’s my hips that hurt, the next day I feel like I can’t lift my arms, then sometimes I feel perfectly fine. Some days I get up to stand and nearly fall over, some days my head feels like it’s in the clouds, some days I have no energy and feel so run down, but I sleep for 10 hours and feel like I haven’t slept at all. These are just a small list of some symptoms my husband claimed for nearly four years before he was diagnosed. And these are some things he was told by multiple doctors when most of his labs and scans came back with normal levels: you probably got up too fast, you need to drink more water, maybe you should stretch, maybe you are depressed – have you tried an anti-depressant? The list goes on and on. Except something he never heard until the end when a younger medical student examined him before the doctor came in: maybe you are telling the truth – and maybe besides giving you half answers we should dig deeper to find what is causing these vastly different symptoms that come and go.
It is because of these above listed facts that we really are unable to truly plan anything for a birthday, holiday, party we are invited to or our anniversary because we never know what the day will bring. Instead, we now plan options A, B and C.
Option A: A is for Amazing Awesome
My husband wakes up with manageable symptoms, maybe even feeling halfway normal, so we go all out and try to find a restaurant where his strict doctor-prescribed diet allows him to eat, take his medication with us, laugh and enjoy the day, soaking up a dose of “healthy” knowing full well it most likely will be gone tomorrow, and talk about our plans for when life as we know it is calmer and steadier. We speak with teary eyes of the beautiful word “remission.” We try to remember that at the end of this dark, dark tunnel, better days are ahead if we just hold on and stick to the plan.
Option B: B is for Blah
My husband wakes up with pain that makes him unable to bear the thought of leaving the house or going out. Dinner at a restaurant would be wasted money as he would squirm in a barely padded seat, shifting his weight back and forth attempting to elevate sharp, stinging back pain. We stay in, still sending our kids to the grandparents as intended. We watch a movie and I make a Ketogenic-approved meal. We talk a little. I remind him there’s no place I’d rather be and then I help run him a detox bath. We head up to bed early and hope tomorrow is a better day.
Option C: C is for Cry, Cringe and Crack
These are the hardest days of the journey. I cringe talking about them because they are so raw, but they truthfully make up a significant portion of this brutal disease and our path to getting my husband’s life back, so in order to spread awareness of what this disease truly does to a person and a family, I have to be honest. These are days where my husbands wakes up and immediately knows he is herxing, that it will be a day mostly spent in bed, waking up only to eat or take medicine. These are days where the kids go to their grandparents as intended, or I leave the house with them as well in order to give my husband time to rest and to have no screaming, rambunctious, beautiful children left in a house where someone vastly ill is trying to sleep – a mandated and important part in recovery. If I stay home and send the kids off, these are days where I see my husband at his most vulnerable moments – moments where we both cry and half try to reassure the other one that these days hopefully in our future will be no more. We take turns being the strong one. I’ve looked into my husband’s lost eyes and told him that I loved him more than anything in this world, that we can get through anything, that we got this sh*t. There are days where I’m maxed out and can’t take another setback, and my husband’s had to reassure me that he won’t stop until he is well. These are the hardest days, but they are also the days we truly realize the true meaning of perseverance – and what “in sickness and in health” means.
My husband’s birthday is this week and our anniversary is the next. It would be a nice birthday or anniversary treat if it was an Option A kind of day. Being realistic, if it’s an Option C day I hope it’s the last birthday he has where this disease has temporarily won. I hope that in a year from now when he rings in his next year of life or another year married, he can also celebrate kicking Lyme disease’s ass!
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