Living with an invisible illness (or several as in my case) has been an interesting experience thus far. I’ve been feeling a little overly emotional lately… well, to be honest, more than just a little. Tears have appeared at the oddest moments. I was telling my mother that I wanted to have a salad bar for an upcoming Sunday dinner and started crying as if the idea of having anything else would be the Sunday dinner equivalent of the apocalypse. Sitting with my family, trying to interact despite the fact that pain killers had derailed my train of thought, I suddenly start crying uncontrollably much to my embarrassment. I awoke from a nap the other day crying for no apparent reason other than I just felt like it.
I chalked it up to an increase in the dose of one of my pain meds since the timing coincides. As I’ve reflected further, I find that the emotions are running a little deeper than just a constant drug-induced crying jag. Imagine if you will, waking up everyday after a full night’s sleep feeling even more exhausted and worn out than when you went to bed the night before. Add to that the distinct pleasure of feeling as if you’ve been run over by a freight train, scraped off the tracks with a snow shovel, then re-deposited there only to be struck again by that stupid train, and it is difficult to convince myself to leave my bed. The hardest part of all of this is that it doesn’t go away. It won’t ever go away. Day after day after day this is my new normal. Or as my mom puts it, my new abnormal… because it certainly isn’t normal!
So what do you do when what you anticipate out of life is anything but normal? I believe we all experience times in our lives when the word “normal” is far from the descriptive we’d choose. I think what is happening to me is the comprehension that this is what life is going to be like every day from now until I die. I’ve mentioned that this realization has been slowly coming to the fore. It comes in waves and with each new level of awareness comes the need to acknowledge and accept the next stage of emotional acceptance. I know this all sounds melodramatic and morbid, but it’s the truth. When I started this blog I promised myself I wouldn’t sugar coat things. Much of what I write here is meant to be a record for my posterity, as well as a place at which I can record my thoughts and feelings as I attempt to navigate this season in life.
I am sure that many of my “chronic illness buddies” will understand where I’m at as I attempt to put my feelings into words here. As I was contemplating the emotions that have been so close to the surface I realized a profound truth. I am having a difficult time imagining living like this just one more day let alone the rest of my life. I have purchased the book “Oh, The Places You’ll Go!” by Dr Seuss for each of my boys. My plan is to have all of their school teachers from preschool through high school sign it at the end of the year. When they graduate from high school I’ll present them their signed books. As I was thinking about this project this morning I was shocked when I couldn’t imagine being there when they were graduating high school. It scared me for a moment, how easily I could go there in my mind. I imagined them standing with their father who would give them the book and tell them of the efforts I’d made on their behalf. For the life of me (no pun intended) I did not see myself there. The fact that living each day takes that much effort that I can’t even see past next week scared me half to death (again, no pun intended… well, ok maybe it was this time.) I don’t want to miss out on those things and I’m sure I won’t. The feeling stems more from the fact that living with illness and pain is hard, just plain hard. Imagining myself having to do this for the rest of my life is agonizingly difficult.
Each night as I lay down to sleep I know that at the break of day I’m going to feel even more worn out than I did the day before no matter how much sleep I get. It seems to accumulate and pile up on me. I keep thinking that one of these mornings I’m bound to open my eyes to a new and refreshed me. Alas, it doesn’t happen. Each day seems to me more difficult than the last. If I sound depressed, it is probably because I am. Wheh! There, I said it! Wow, now that I’ve actually put it out there I feel a bit of freedom. I’m usually so good at finding the bright side in life that I feel just a little guilty about being so intensely sad. Certainly there are many people who are suffering similar challenges and even more who face challenges much worse than mine. This is my reality though and I feel just a little better admitting the struggle I’m facing.
I am still trying my utmost best to find the positives, to search for the silver linings. I’ve been knocking at the doors of heaven for strength, guidance, and the ability to accept his will but I must admit that those shiny silver threads are becoming a bit elusive. Just this morning I was looking in the mirror trying to gear myself up to actually dry my hair. Why even bother you ask? Well, because there are a few rituals I like to maintain in an effort to preserve some sense of normalcy and sanity. First, I make my bed, no matter what, because if I don’t the temptation to crawl back in and throw in the towel for the day is too great. Once the bed is made I figure it is too late to back out now and I might as well move on with the day. I don’t shower everyday, don’t judge me, it is just too much effort. However, I do try to do something with my hair, put on a little makeup and get dressed in something other than sweats. On the days that I manage a shower I like to dry my hair, it is exhausting but worth it in the end. My fear is that if I don’t endeavor to do these little things than I might as well give in to the depression that is threatening to overwhelm me.
I’ve been down this road before. Let’s call it the “road to acceptance.” It is a hard road to travel with lots of twists and turns, boulders and large obstacles, and oftentimes I feel like I’m not up to the task of traversing it. The first time I had to travel this road started with endometriosis in high school, then my beloved Julie died, after that during the months leading up to and recovering from my hysterectomy, not to mention the failed adoptions etc… and now this. You’d think that with all that I’ve been through I would have learned a better way to manage this “road.” Actually I have learned one thing. You can’t avoid the emotional roller coaster it takes to accept what is happening. It won’t go away if you ignore it or try to stuff the negative emotions in a place where you think they’re hidden from view. The only way to get through it is to do just that. Go through it, not around it, not over it, not under it, but through it. (I’m sure there is a Dr. Seussism in there somewhere but I’m too tired to figure it out…)
One of the most difficult aspects of having an invisible illness and attempting to ride the coinciding emotional coaster with some grace intact is deciding who to lean on and who is just plain sick of hearing about it. I worry that I’m wearing thin on my loved ones. There are many, who mistakenly think that I will be getting better. They say things like, “I’m sure you’ll be feeling better soon…” Then I sound rude if I respond, “Well, no I won’t be actually.” So I smile and nod wishing so much I could pour my heart out and cry on their shoulders. Or my personal favorite lately, “You look like you’re feeling good….” Um, ok. What am I supposed to look like? Just like anyone else I don’t relish the thought of leaving my house with no makeup and hair askew. Like any girl I still enjoy putting on a cute outfit and at least making an attempt to look all right. It doesn’t mean I feel all right though. Having an invisible illness is tricky. You almost feel guilty for looking like everything is ok… like maybe people will only understand what you are really going through if your hair is greasy, makeup smeared, and clothing rumpled as if you just crawled out of bed.
Then you have those moments when people ask how you are and you wonder to yourself, “Do they want to know the whole nasty truth, the short and sweet, or are they just being polite?” So usually I answer with the socially acceptable, “I’m hangin’ in there…” or, “I’m ok.” I appreciate my friends who really want to know and expressly ask for the long, short, and everything in between of it. Sometimes I just want to vent or I really need to cry. It gives me great anxiety in these situations because I don’t want to be a burden to anyone. I’m sure my friends and especially my family are sick of hearing about it. It is an all-consuming, life altering experience for me and I find it difficult in conversation to talk of anything else. This is another reason I insist on going to school, I need to find someway to “be” outside of myself and these hard experiences.
So there you have it. Not really a very fun or uplifting update. I was going to apologize for my honesty but I promptly erased that sentence and decided that I’m tired of apologizing for the fact that I don’t feel good and I don’t feel good about it. I continue to pray fervently for patience, understanding, and grace. I pray that my children won’t be too damaged by my inability to do the things that I want to with them. I pray to keep my eye on that faint silver lining, I know that if I can keep it within my sights it can only get brighter at this point. I continue to express gratitude to God for my loving and patient family and friends. Most of all I pray that I’ll be able to endure one more day, one more month, and several more years. Someday acceptance will come, I know that. In the mean time if I break down into tears right before your eyes, just please hug me and remind me that I can do this.