Tags
Chronic Illness, chronic Lyme disease, chronic pain, health, invisible illness, journal, life, Lyme Disease, Lyme disease awareness, spoonies
Today is a beautiful spring day. The first true day of spring we’ve had. The sky is a beautiful springtime blue laced with lazy wispy clouds, meadowlarks are singing for the first time, my first few crocuses are blooming, the first hints of new grass are appearing, and there’s just a breath of a breeze—enough to waft the fresh smell of earth into your face. It’s perfect.
I want nothing more than to sit outside all day. And you would think I could: I don’t have a job, I don’t have kids, my husband’s away for the day, and moreover—it’s Saturday. But that’s where things get complicated.
This spring marks my 23rd year with Lyme Disease. I didn’t know I had it until last year. I knew there was something wrong with me—I was getting “old” too fast—I started having problems in my teens that most people don’t have until well into their 60s: Insomnia, headaches, degenerative disc disease (bad enough to require 3 emergency surgeries before the age of 24), arthritis, pain everywhere, increasingly poor memory, and exhaustion that simply wouldn’t lift, even when I managed to get 10 hours of sleep a night.
I could write a whole book on my journey from the past 23 years up to this beautiful spring day. In fact, I’m trying to. But my focus today is just that: today. Today is beautiful, and I want to go out and enjoy it. But with chronic Lyme Disease, just like with many other chronic illnesses, I have to weigh the cost. I have to weigh the cost of everything I do, including when and how I open my eyes in the morning. This is the burden of chronic illness that most people have the hardest time understanding. It’s why the Spoon Theory was invented to help explain it.
An explanation of the Spoon Theory is easily found by googling; I know because I did it just yesterday. The original blog post by Christine Miserandino is well worth a read, and so popular that autocorrect just filled her last name in for me, even though I’ve never written it before. And that’s today’s problem: the spoons it takes to do something as simple as stepping outside to enjoy a beautiful day.
I am what they call “housebound”. Simply put, my level of illness dictates that I don’t leave my house. I am not quite “bed bound”, but I’m close—I spend all day on the couch, except when I’m feeding my cats or myself, taking pills, or in the bathroom. I spend a lot of time in the bathroom. Anything beyond this basic level of activity causes a marked increase in my pain and exhaustion—not just for a few minutes or a few hours, but for days.
So that’s today’s conundrum: is a few minutes’ enjoyment of a lovely spring day worth the toll it will take on my body? Mentally and emotionally it would be refreshing and satisfying on a level that few things are. However, in order to go outside I have a number of obstacles I have to negotiate.
The first is clothes. I am in my pajamas from 3 days ago. They are too thin for the current temperature, and I am highly sensitive to changes in temperature. If I get too cold, I will have extra muscle pain for days. I’m also dealing with walking pneumonia, a common side effect of chronic Lyme. Getting too cold could aggravate that, meaning I will be coughing so hard that I puke and involuntarily pee myself, possibly for days. So if I go outside, I need to put on warmer clothes.
The problem with putting on clothes is the extra movement it takes. Getting into jeans is hard for me. Long story short, my core muscles are very messed up and not happy with bending movements. Getting into a reasonably loose pair of jeans involves too much stress on my core, which will leave me aching and out of breath. (This is why I’ve been in the same pajamas for 3 days.)
After the pants I have to negotiate a bigger obstacle: socks and shoes. Due to the above mentioned muscular difficulties, I cannot reach my feet comfortably. Putting on socks is a strain, even with all the ways I’ve found to make it easier. And believe me, I’ve had 23 years of practice at creative ways of putting on socks, due to all the back surgeries.
Shoes are even more difficult. They are probably the biggest hurdle because putting them on requires more muscle involvement and finer control. Often by the time I get dressed and get socks and shoes on, I’ve used up all my spare energy, am breathless and aching, and am regretting my decision to leave the house. This is usually where the inevitable headache begins.
Assuming I make it this far, I can go outside and enjoy the day. Except that by this point I’ve used up so much energy that I’m unlikely to make it farther than the front step. If I do go on, I have to move slowly, and stay close enough to the house that I have enough energy to get back inside afterwards. And then when I do get inside, I have to take everything off again.
All in all, this entire excursion will leave me exhausted, flat on the couch, in at least a minor flare. This means my phone will feel too heavy to lift, my entire spine will be aching from my tailbone to the base of my skull, my head will be pounding, normal daylight will be too bright for my eyes, and normal sounds will make my eardrums physically hurt. I will be unable to think, unable to form basic sentences, and too tired to speak them if any occur to me. And I won’t be able to sleep. I’ll feel the need for sleep, and maybe doze fitfully for a minute or two, but actual sleep won’t happen, even if I use all the meditation tricks I know. If I’m very fortunate, because I’ve been staying within my energy envelope for the past few months, the worst of this flare may only last for an hour or so. But I will feel long-term effects for days.
I already struggle to think clearly and remember things, and a simple excursion like this can double my mental difficulties for the next 4 or 5 days. This means I will be unable to comprehend conversations, will have difficulty reading and need long rest periods, and be unable to distract myself with Facebook or Netflix because my brain will refuse to comprehend anything. I will forget to eat and take my pills on schedule, meaning half of them don’t get taken, which will further compound the problem. A lot of my pills are necessary vitamins and minerals, which Lyme depletes, and which my body needs in order to make basic energy molecules. Without them, I don’t recover at all.
I will also experience extra stiffness and cramping for the next few days, and will get several more headaches than usual. This means extra pain medication, which I try to avoid, and several days of existing in misery, minute by minute, just waiting for the day to be over.
This is the price I pay for something that sounds as simple as stepping outside for a few minutes. This is why I nearly laughed in my doctor’s face when she told me that taking a walk every day would make me feel better. This is why I, and many other people like me, stay home on the couch in 3-day-old pajamas, when it’s a perfect day outside and we’re aching to enjoy it.
All in all, for someone like me, this beautiful, perfect spring day is best enjoyed from my couch, with a window open so I can hear the birds and smell the fresh spring air, and glimpse a patch of sky. And don’t get me wrong, I am profoundly grateful for a perfect spring day.
The Novel Faery 