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.