The Mighty Logo

What Life as a 'Functioning Lymie' Looks Like on Days You Don't See Me

The most helpful emails in health
Browse our free newsletters

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for others – just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.)

But what people don’t see are the days in between – the days I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability. Thankfully I have been blessed over the years to stagger along in this manner as a functioning Lymie.

I also have a gathering to go to after work tomorrow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But I don’t usually do anything after a work day because I just spent the day giving 100 percent to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue, and rather than enjoying myself I will be a half-human whose mind is only about 30 percent present and therefore will get about 30 percent benefit. These are the challenges faced by the upright and mobile Lymie. Spoons, anyone?

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced), how can I convey what it’s like to be a functioning Lymie?

I also know that the yoyo-ing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me, it’s complicated. Frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. So what is life like when I’m not doing so well, and you don’t see me?

I wake up at 10:00 a.m. and don’t feel like moving. I feel groggy and heavy and “hungover.” I had a hard time falling asleep last night, like most nights. It’s a catch-22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting nine hours of sleep I don’t feel rested at all. I may need to take a nap today. My brain feels like it is still in that state of shutting down – you know, like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being as I am trying to wake up.

I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether creamy fluids (hemp and flax milk) are a problem. As usual, the matcha green tea latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway, hoping it will be my nectar of life. Sigh. I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices, choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there, but on most days like this, breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night, that have to be taken two hours away from food and other pills. I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken four hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audiobook, reading my Bible app and playing Candy Crush and Words With Friends.

I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker. I’m more lightheaded, struggle a little with feeling breathless and have a harder heartbeat. Something to do with POTS, I think…

I finally get out and get dressed. My equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to a herxheimer die off reaction. I look down at my body, which I usually try and avoid at all costs; it is swollen, the edema is especially bad and my legs are jiggling like a waterbed (you think this is an exaggeration – it is not). The water retention makes my legs much bigger than they would be. It has been about seven years since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced. Now picture the deep muscle ache of a hard workout after having not worked out for months. Got it? OK. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (Although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully, for the most part, it has been improving. Today the fluid is bad , but the pain is maybe a four out of 10.

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is also my normal now and I wonder what I would look like “un-puffed.” I do get glimpses from time to time. It’s now into the afternoon. I haven’t eaten much, I feel fuzzy in my head and I’m tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or a bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low-grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache.

Many of you wonder why I don’t paint or do something artistic on my days off like this. It’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself even if you wanted to. Believe me, I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen. So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls, one apathetic day at a time.

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my 20s, and now most of my 30s. Only Lymies will understand this, but this disease eats youIt eats your body, your mind…what makes you you. It also eats your time on this earth, like water eroding the shoreline. Today I need to focus on spiritual things, because on days like today that are empty nothings sucked into the void, I have nothing else.

 We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Thomas Northcut.

Originally published: April 20, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home