I do love Easter, but to understand why you’ll have to read through to the end. Be patient, this isn’t pretty, but I think it’s worth it. Of course this is my blog so I’m obviously biased, but here, judge for yourself… There is a problem with having a good day. “Wait, there is a PROBLEM with having a good day,” you ask? Why yes. I’m sure you’re dying to know so I’ll tell you. I must begin with a glimpse into the life of a chronically ill person. We’ll call this “A day in the life of Stina.”
I’ve set an alarm that sounds like a rooster. At first I thought this would be funny. Let’s just say that things that are funny when you’re fully awake are not so funny first thing in the morning. It’s a good thing the rooster crowing is actually my cell phone, otherwise we might be eating said rooster for dinner. I don’t know how people actually live with those things on a farm. Seriously obnoxious, but I guess that is why you set an alarm, right? To roust you out of bed? When my rooster crows I’ve typically only gotten 2 to 3 hours of sleep thanks to the various illnesses that I live with. Even if I’m fortunate enough to have gotten more it usually only amounts to about 4 hours. If I can manage 5 or more, well watch out world, here I come! The reason I can’t sleep? Either I’m in and out of bed because I can’t get enough of my porcelain throne or I’m laying there trying to think of anything but the aches and pains all over my body. If I’m really lucky, the swelling in my knees and ankles pushes against the nerves there and I get sharp shooting pains all through my arms and legs. Yes, I know, you are so jealous right now. Stop envying my situation; you too can feel this way if you hit yourself really hard with a bat over and over again. Oops, am I being too honest? Well maybe it’s because I’m so tired and high on pain pills that I can’t control my tongue. Try living with me, not very fun I tell you. Crohn’s, RA, and AS all cause “flu like” symptoms and fatigue, you’d think this would help me sleep like a rock. Not so my friends, not so.
After resisting the urge to chuck my crowing rooster cell phone across the room I slowly attempt sitting up. You see, I’m usually really stiff in the morning and every movement seems monumentally impossible. I’m like the Tin Man from Wizard of Oz. I should really have Dorothy on hand with an oil can. You can actually hear each joint moan and groan as I stumble my way to my closet. Once there I think, “Wow I made it out of bed and I’m already in need of a nap.” In my closet I put on my workout clothes… don’t laugh, I’m doing my best to stay mobile as long as I possibly can. At this point I head out to my treadmill where I stand and stare at it for a long time. I used to love my treadmill, now it just glares back at me, challenging me to get on. I can almost hear it saying, “You wimp, you can’t do this anymore, I dare you to even try.” You know what? I do try. Every morning I get on that darned treadmill and I walk. Honestly it is more like hobbling, but I do it. I can only go at a 3 mile an hour pace for about 30 min before I practically fall off exhausted. Sad considering I had once built up to an 8 minute mile and could hold that pace for at least an hour. I realize that pace isn’t stellar, but it sure is a lot faster than I can go now. I’d like to start swimming but since my husband leaves for work at 5:30 am and I have a child who still hasn’t started kindergarten, the reality of the situation is that I am not able to go unless I leave Alex with a sitter. We can’t afford a sitter for that, we are paying for my medical care. So I force myself to get on that treadmill almost everyday in hopes that I can just keep my body mobile for as long as possible. If you thought I was tired after I clawed my way out of bed and to the closet, now I’m downright done for the day and it is only 8 am.
Alas, no naps for me yet, I have two kids to get up and one has to be to school in an hour. So I peel myself off the floor where I usually am after I stumble off the treadmill and wake the boys. I try my best to hide my pain and exhaustion from them by pasting a smile on my face before I open their bedroom door. We go through the motions of getting ready for the day as best we can. By the time I get everyone dressed, fed, scriptures studied, and out the door I want to lie down in bed and cry. I really, really do.
The next thing on the agenda would be a shower. Let’s discuss this for a moment, shall we? Well, technically I’ll be discussing it and you’ll be reading. I go up the stairs in my house and with each step I feel my heart rate rising. That sounds terribly dramatic, but it’s true. I dread taking showers. It isn’t so much the actual shower that is the problem; it’s the stuff that has to be taken care of in the shower. It hurts to raise my arms and wash my hair. It is agonizingly awkward and painful to shave my legs, and we won’t even talk about what it is like to dry myself, put on lotion, and then get dressed. Next I’m faced with the daunting task of drying my hair. The very thought of picking up my hair dryer makes me shiver. There are days when I walk into my bathroom and think, “Forget it, there is no way I can survive a shower today.” Sorry if I start to resemble Pig-Pen from Charley Brown, now you know why… Then there are those days when I know it must be done, so I dig down deep and do my best. On these days it usually means I’m going somewhere so, although I can avoid the makeup, sadly the hair must be addressed. There have been days when it takes me well over two hours to get ready, not because I’m vain, but because it just hurts. At this point I’m so worn out that all I can do is sit for a while and hope that my energy returns in some measure so that I can get my other son off to preschool. During those two hours I must either tackle homework or try to run an errand or two without kids in tow.
Do you feel sorry for me yet? That isn’t my purpose, so don’t. I don’t want or need your pity, what I need is your understanding, so I’ll continue. The errands I run are typically to get my prescriptions. I gave up on grocery shopping several months ago. Thankfully my mom does that for me now. I know most people hate grocery shopping but I actually miss it. It is hard to adjust to, what a dear friend of mine called, “my new normal.” Things that I used to loathe doing, that I took for granted as being a chore, are actually a rare treat for me. If I could do my own shopping I think I’d be beside myself with joy. I really would! Funny the things we take for granted, right? The errands I’ve kept for myself usually involve the pharmacy or sometimes I try to squeeze a Dr’s visit in while Alex is at school. Although at this point I’m feeling even more fatigued, I still need to get Alex from preschool and feed him lunch. Then, of course, there is my own homework to be done. At this point you’re probably wondering why I bother to add school to my plate. It’s because I love it and so much of what I love about life has either been taken from me or put on hold due to illness that I felt I must stand my ground on this one. It helps me keep my brain occupied so that I don’t dwell on the negativity that threatens to set in. I’ve written about this before in a previous post so I won’t elaborate here, if you want to understand why I insist on going to school then read the link. Needless to say, I refuse to surrender that opportunity. I refuse to let chronic illness turn my mind to mush as well!
By one o’clock I can hardly keep my eyes open so I try to take a nap. Some days this works really well and I can squeeze about 20 to 30 min in before Alex needs me. Other days he needs my time and attention the entire afternoon and so what usually happens is that I lay down on the couch and watch him play. If I fall asleep he wakes me every few minutes to show me what he is doing. I do my best to stay engaged and involved with him, after all, it isn’t his fault I’m sick.
At 3:40 Sean gets home from school and I must give him the attention he needs and deserves as well. After Sean is settled in it’s time to think about what to do for dinner. I really have used up all of my energy reserves at this point. I can hardly move I’m so sore and if I haven’t had even a short nap, dinner seems impossible. You have to remember that I was already feeling completely exhausted after my little walk to the closet first thing in the morning. At this point in the day I just want to scream in frustration at the thought of putting an evening meal together. I’m very lucky to be surrounded by loving friends and neighbors who’ve provided frozen meals and quick dinner options or I really think we’d all starve to death or die of coronaries from too much fast food!
After dinner the kids need to be put to bed. Greg usually takes care of the kitchen while Sean supervises the bedtime routine. In this instance his Asperger’s proves to be a blessing. He is wonderful at remembering to brush his teeth, say his prayers etc… even better? He makes sure his little brother gets those things done as well. Kids with Asperger’s thrive on routine and they typically are strict “rule keepers.” This means that he is great at helping his little brother along the way. What is wrong with this picture you ask? As a mother I WANT to be more involved in these things but I’m just not capable, especially if I’ve overdone it during the day. And how do I overdo it? Well, anything from doing a couple loads of laundry, to attempting to fold said laundry could send me over the edge, not to mention I hate laundry. (I have to be honest and say that if the ability to do my own laundry goes away I may not actually be too sad about that!)
What is hardest for me is that now each and every thing I choose to do throughout my day takes thought and planning. It takes great mental and physical effort that was never required before. The worst part of all of this is that it isn’t going to go away or get better either. In fact, it is going to get worse. I’ve been warned that I’m only in the early stages of my diseases, that even though I’m taking nasty drugs, they will only delay the inevitable unless something drastic changes in my lifetime. Just the other day someone said to me that she hoped I felt better soon. I just looked at her in my exhausted haze and thought, “That’s just it… it isn’t going to get better, I have to accept this as my ‘new normal’.” There are limitations that I have to respect that weren’t there before. I can’t do everything that healthy people take for granted.
Back to my original statement, the problem with having a good day is that I haven’t figured out how to accept my “new normal” yet. My mind wants me to go, go, go! So when I wake in the morning and for the first time in months feel as if I’ve only been hit by a small minivan and not a Mack truck, I get a little overzealous. I try to do too much, like instead of leaving most of my errands to someone else I might actually attempt Costco by myself. While it feels fun in the moment, this is a very bad idea. Within a few hours I’m already paying the price. It is things like this that I took for granted in the past. Who doesn’t? Who goes to Costco and gets exhausted? Well, ok, if there are a ton of samples and you spend the afternoon revisiting those stations several times you might wear yourself out. Truthfully though? A healthy individual can usually tackle a trip to Costco, no sweat! Me? Not so much, I sweat, then I hurt, then I regret going because those samples I tried are now sending me bolting to the loo! That’s right; I’ve adopted a terrible English accent just to prove my point.
What brought this rant on? Well I’m actually going to get all positive and mushy on you now. Are you ready? Here I go… I LOVE EASTER. I love the hope that it brings, I love the thought of a resurrected Lord who paved the way so that I too can be resurrected. For those following my blog who are not overly religious, I’ll briefly explain my beliefs. I am a Christian, obviously, and I also believe that because of Christ’s sacrifice I too will be resurrected. What this means is that this sad, pathetic, worn out body of mine will someday be made whole and perfect again. Oh how I look forward to that day. How I long for the days when I can run and jump and play. I dream of the time when this body of mine is no longer a burden or my prison. I have faith that someday the blessings of a body, fully renewed and forever made perfect, will be mine to cherish. On that day I will dance my way into my Savior’s arms where I will finally be able to rest from the cares and concerns of this world. Easter reminds me to hope; even more, this holiday reminds me to NOT lose hope. During this Easter weekend I will rest in the knowledge that, because my Heavenly Father loves me, there will come a time when I am made well and whole again! So let’s all raise a candy coated chocolate Easter egg and celebrate the fact that there will come a time when having a really good day, everyday, will be my “new normal!”