For now, i'm battling the day in and day out struggle with this demon called chronic pain. It's enough to make a person crazy and it's a lot to deal with. It's hard to even know where to start...some days are really dark... but here goes:
The novelty of my diagnosis has worn off. I learned I had a rare disease a little more than a year ago and in that time I busied myself with learning as I sorted and pored through tons of new information. I also met others with the same disease, joined support groups, ordered countless braces for bendy body parts, had a million dr and therapy appointments and cried many tears in between. I usually had some kind of emotional breakdown every 12-24 hours the first couple months when I realized I would never get better. Finding out that I'm a medical zebra (rare) was awesome & liberating. Getting connected with others... amazing! Discovering it wasn't all just in my head... what a load off! But over time, I find myself dealing with the flip side of the coin as the newness wears off. Yes, Ehlers-Danlos Syndrome is a connective tissue disorder, but in layman's terms the translation equals overall body pain that hurts worse every single time you move until you can't stand it anymore. It's a nightmare for anyone, but especially hard for this type-A homeschooling, previously organized business woman-mama with young kids.
I've already lost so much... and how much worse will it get as I get older? I know that I will never be able to walk across a beach with my own feet, take my kids to the zoo, open a vintage store, go to the grocery store by myself, hike through nature, cook for my own family, ride a bike, work hard at something, sew, paint, draw, carry my 4 year old in my arms, take care of others when they really need help, plant flowers in the spring, propel my own wheelchair with my own hands, visit friends or family with stairs, piece together this blog without having crippling pain in my hands (thank God for the talk-to-text feature on my phone, but all the editing still hurts) or have a life (or a day) without chronic pain. It is a lot to process every single day and many days I really struggle.
It's also lonely to have a chronic illness. No one really wants to hear how bad you feel all the time or if I do get a lucky soul that will entertain me for a bit... I end up wearing the poor person down as the biggest Debbie Downer that ever existed. I find myself just answering, "I'm fine" when people ask me how I am as I hold all the yuck in to myself. It becomes a big burden to bear alone. It is a lot of yuck for one person to deal with, so I'm hashing it all out in this blog in hopes that it will be therapeutic.
*Disclaimer: Usually I've tried to keep my blog entries light and up lifting with a happy little wrap up at the end, grammar double checked, transitions well placed… but sometimes, my days are just ugly and not tidy in any way.. so I'm trying to just get it all out rather than proofread too much. So bear with me if these posts are not fluid. My brain feels very scattered a lot. Also, I DO try every single day to focus on what I CAN do and I feel VERY thankful for those things. I can see beautiful colors & sunsets, hear my kids laugh, smell the orange blossoms at my Florida house and eat bacon of all things despite having the horrible GI symptoms that come with EDS. I've also realized that the best thing I can offer my family as the mama is a good, cheerful & confident attitude full of encouragement & seasoned with love. It's the only thing I have to offer them and I do it proudly. Currently we joke around a lot... and Paul makes fun of me and my "Ted Danson Disease" often and oddly it seems to be just the right kind of medicine. (If you know him, you get it). But there are some really dark moments of grief & loss that hide behind smiles and the daily routine that I just need to get out so please bear with me as I show off that side a bit.
Every day I walk a fine line between pushing myself to do what little I still can and being careful not to do too much or else it makes my symptoms worse. And the line changes from day to day to keep me guessing. Can I type for 10 minutes today... or will it be 20 or have I now just overdone it? Can I walk to my refrigerator AND my front porch to get the mail right now... or should I not chance it and stay with just visiting the frige? Normally, I don't know when I've overdone it until the next morning when I wake up & can't move. The frustration of not knowing when I'm overdoing it is enough to make me want to rip my face off! I often say, the disability is one thing... but combined with bucket loads of pain is just too much to bear some days... it's a double whammy to the spirit & body.
There are so many different layers and kinds of pain that I experience over a given week. First, I peel myself out of bed then the pain begins. I start the day with a dull roar of overall "bruised feeling" body pain that never goes away and feels like you've been hit by a Mack truck or been in a skiing accident or perhaps beaten with a baseball bat or pulled apart with a crowbar. Then there's the trembling, shaking and weakness when you're getting close to your limit of exertion which usually sneaks up on me by midday from hobbling though my house to check on people doing their schoolwork, chores, work/etc. Then we have the pins and needles, burning and stabbing sensation around whichever joint I have just strained....usually in 4 or 5 different areas every day by afternoon. And when things get really nasty after I've REALLY overdone something, like trying to go to 2 maybe 3 yard sales with my own legs sans wheelchair, it feels like I've been clutched in the claws of the devil himself. That has only happened to me about 7 or 8 times in the last few years. It takes me a couple months to recover from those spells every time and it's enough for me to say... ok, pain, you win... I will never try to walk that much (or little) again. I often feel like I'm trapped in a prison in my own body.
So I am always trying to underdo it, conserving my activity, saving back energy and constantly being smart about every single movement I make with my joints (The Spoon Theory describes this more perfectly than I can). We have examined, streamlined & simplified our homelife survival skills with the help of my exemplary problem solver husband. It sounds very "responsible" but errs on the side of white trash if you ask me. If a task can be done by someone else, I enlist help. If it can be eliminated or postponed, we seriously consider it. We're talking basics here like grooming, meal preparation, house cleanliness, & yard maintenance but it seems to be working.
So here I am with my pain 24/7. Me and my little buddy. When I first started having substantially more pain a few years ago I was so panicked & felt like something MUST be done to FIX THIS NOW! But as time's gone on... I've made room for the pain as I realize no medication or therapy really helps. I always think about the classic SNL/Chris Farley skit where he plays a motivational speaker living in a van down by the river. I think of the pain as being my "little buddy, my pal, my amigo" that's packing its suitcase & moving in for the long haul. Pain says, "I'm gonna be your shadow... here's you... here's me. There's you, there's me...." and finally... "I don't give a rat's behind 'cause i'm movin' in." I don't like it much, but there's just not a whole lot I can do about my friend that won't leave.
I remember before I got my diagnosis, I would stand in front of my bathroom mirror and look back at myself wondering what in the heck was wrong with me? I would just stare into my own eyes with black circles under them and wonder "if I could unzip my body, what would i see?" Black tumors? lesions? grotesque growths? bruised organs? Discolored blood or bile in abnormal colors running rampant? When I saw this many months later on my online support group... it captured well what I thought might be inside.
I'm not sure why, but I hate sharing memes on Facebook. I guess I'm just not a meme-sharing type person, but also the font selections & graphics are sometimes laid out horribly. Hey, just being real here. But here are a few that I like that get the point across while I'm in the meme sharing mood:
(Regarding the zombie designs, cute, but so jealous that the Walking Dead zombies can RUN when hungry... what gives?)
Needless to say, it's been a profound situation for me. All this has made me question my faith. A lot. I have to wonder why God would do this to me or anyone. What's the good? My world is so very small. I'm so shut in that most opportunities to be with people have been taken away. Isn't Christianity about loving people, rolling up your sleeves and serving others and not yourself? Why would He do this? My energy and resources are so limited that I can never be on the giving end. I'm always going to need help. Why, why, why???!!! It makes no sense to me at all.
I think without knowing it I wrestle with this concept deep down every day. My spirit feels like it's churning some days as this old body lets me down.
A few days ago, I decided to read 2nd Corinthians 5 verses 1-10. I was desperate to read something about heaven because the world down here does not sparkle brightly for me anymore. I have to include it all here because it's just so good:
"For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan, longing to put on our heavenly dwelling, if indeed by putting it on we may not be found naked. For while we are still in this tent, we groan, being burdened – not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. He who has prepared us for this very thing is God, who has given us the spirit as a deposit, guaranteeing what is to come."
"Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. So we make it our goal to please him, whether we are at home in the body or away from it."
And then this all kind of makes sense. Not really in my mind, but in that bit of bright, burning beauty of the spirit that God has given me as a down payment for something bigger and better down the way. I don't know why I can't help people and why I will be a burden physically and financially to everyone in my life. But I have seen enough of God's goodness in my lifetime to deny it. "Thou he slay me, yet will I trust Him" as Job says. And if I do wrestle with those thoughts, doubts and emotions… I have to end up on the side that believes there is something better than the things we can see and understand and that everything happens for his good purposes. If I look around for sweetness, I will find it. God is sustaining me, providing for all of my needs (and they are many), and giving me an underlying peace in the midst of a bleak situation.
And if you believe in heaven and daydream about it like I do, then this meme is perhaps the corniest of all and a huge understatement, but here goes:
And if you believe in heaven and daydream about it like I do, then this meme is perhaps the corniest of all and a huge understatement, but here goes:
Now excuse me please while I go alternate heat & ice on my wrist & elbow.
