One of the hardest things about Lyme+ is that no two days are alike. I have days when I feel fairly good. I rode a bike a few days ago. But today I’m laying in bed in a lot of pain and every time I get up I feel dizzy, weak and nauseated.

That doesn’t mean I’m going backwards – just as having good days doesn’t necessarily mean I’m getting better. This is not like other illnesses where you take a pill, start improving and keep improving. Healing is not linear…It’s up and down and sideways sometimes.

I’ve had some promising improvement lately, which can get my hopes up. We traveled for doctor visits the last few months – being away from the norms of daily life was hugely impactful on my progress. My Lyme doc has pushed an “island lifestyle” for years. I don’t think I truly understood what he meant until now.

I cannot balance healthy food management, taking all the necessary meds and supplements, doing various therapies, and getting the right amount of rest with cooking, cleaning, shopping and all the normal life duties. It just isn’t possible.

I can’t go to the dentist and take a shower and make meals on the same days I take all my meds and do all my therapies.

That’s pretty discouraging!

I don’t know how I’ll move forward with life at this point, but I know this for certain: I won’t give up.

I will learn to simplify.

I will learn to minimize.

I will learn to focus my energies on my health.

You’d think after 16 years of being sick, I’d know how to balance life. But I don’t. I’m not really sure I will ever learn how to be dependent on others. I want to do it all myself – I want to not be a burden.

My husband is in this with me – he rubs my neck every night, he helps me remember to take pills and drops (about 10 times a day), he helps me do my exercises, he makes me food, does my laundry, etc etc. Over the years he would get up with me at night to rub my feet or help me to the bathroom, he gave me hundreds of injections and thousands of IVs. He’s taken me to doctors all over the state and country, he’s held my hand in the ER way more times than I can count, and he’s supported all the crazy, voodoo treatment programs.

My daughters clean and cook and do the grocery shopping. They sit with me in dark rooms and watch movies with me just to keep me company.

I don’t know where I’d be without my family. I need them. But I also hate to interrupt their lives for my sickness.

That can be an overwhelming guilt. I want them to live their own lives! I want them to not be stuck here with me.

All the things I’m missing out on – they are too. Hiking, kayaking, potluck jam sessions with our friends – we have lost years of these adventures.

Still – I’m so very glad they’re here. I’d be lost without them.

To the caretakers of the world – know you mean more to your sick loved one than they could ever say. They need you. They need help – but more importantly they need to know they’re not alone.