That's how I feel about my chronic conditions! Not only an elephant in the room, but a monkey on my back! Sometimes a bird in my hair and a whole zoo up in my business! It's unavoidable. A fairly private person, I don't like to draw attention to what is necessarily going on over here in Jamitown, it is a difficult task to try to live a "quiet, normal life" when carrying around the elephant of chronic illness right there on your back. Today I just want to share what it's like to feel the burden of that elephant. At least a smidgen of that elephant. Maybe just a tusk.
It's not like wearing a cast on your arm or leg or a bandage on your head, which garners attention, but then quickly fades. It's a constant presence in my life which dictates from every aspect-what I can eat, what I can drink, where I can go, how long I can sit, is it a long drive, how far are the bathrooms from my seat, are the seats comfortable, will there be items I can eat or do I need to sneak in my own food, will I dehydrate because I'm trying not to drink so I'm not in the bathroom every few minutes-disrupting everyone around me, will I have pain and have to leave suddenly,will there be flashing lights that could cause a seizure episode,how much walking is involved, are there close places to park,will I be able to take all my medications on time,and on and on.
It's beyond difficult to be "incognito" with an illness that robs you of your privacy and freedom. This creates a life where I often opt to stay home, avoiding many social situations where my illness may cause attention, or will make me more uncomfortable, and neither is worth it, to be honest. And in all of that is the whole "letting others down" element. Being a wife and a mom is at the top of my list, and they have had to rotate around me several times because I am not able to go, stay, participate, or conform. Letting people down is beyond awful for me.
I am a person who dislikes telling people I can't eat or drink this or that. I've always been very polite about being flexible when going to someone's home, but now my condition warrants very strict dietary needs. I no longer have the freedom to go to someone's home for dinner or even coffee and snacks unless they understand just how bland and boring my dietary restrictions are and don't mind meeting them. But see, I don't like having to make people bend these ridiculous but necessary standards, so I just don't offer or put myself in situations where socializing can happen. I'm tired of my condition ruling my life, but I don't have a choice. Going to receptions or other parties can be a nightmare, just like public restrooms, and I'll spare you those details. Let's just say I'm always happy to be home, where yoga pants and my own restroom awaits.
How all of these thoughts came together was the fact that I can no longer be as selfless as I want to be in my giving. I no longer have the freedom to drop everything and go help someone unload a truckload of something. My body cannot handle the strain of carrying weight, or putting pressure on my core area any longer. Standing for too long, raking, working outside in general, even my own housekeeping is a huge challenge. I work in 5 minute increments and I do many things from my stool. On a "good" day, I work longer on my feet, but pay for it the next.
The problem is, on the outside, I look completely fine. I look capable. Some even think I look "fit". To this, I laugh inside, as I am no longer able to complete my fitness goals. No biking, no walking longer than my driveway, no cardio, nothing that jostles the bladder. Stretching and arm weights. That's about it. It's not easy to complete a fitness goal with those restrictions. I had fitness goals, people! Just like some of you! It's not easy to clean a house. it's not easy to do a lot of things, but not being able to help others, and constantly having to talk about my condition, giving it all the attention has been the worst. You think you're tired of hearing about it? Guess who's tired of talking about it?
I don't want this to be my constant companion, but when my well-being depends on every aspect of my life being as healthy as possible, I have no choice. I have to be constantly aware of everything I'm doing, eating, and drinking, and every choice I'm making. These past few years of adapting to this new life and grieving my old carefree life has taught me that I took those years for granted. Think about what you are taking for granted today. The things you don't do that you can, and the things you're doing that you should not. And I don't say that to be preachy and all finger-pointy (yes, it's a word now), but maybe you're doing things that are adverse to your health and it will catch up at some point. Or maybe not, I've seen that too! I should have heeded the warning of the wise old woman who told me in the 80's to stay out of the tanning beds. I went in the 80's, and I regret every minute!
I don't know why this condition happened to me. I wish I could blame something, but I did not bring this on myself through any bad life habits or choices. This just happened one day out of the blue, the same way my seizure disorder started. And now I'm being told I may also have a third condition, but I'm not speaking it into existence at this time. People with IC (Interstitial Cystitis) often have more than one other auto-immune disorder and no one knows how to link them together.
My life is lived for survival at the moment, though I've struggled to not feel selfish, as I can't help people, like my own mother, who has been struggling for the last two years. She has had to hire a lot of help. All of those thoughts have done nothing but add to the stress, which exacerbates this condition! I want to shut myself off and forget I have this. I want to eat what I want like regular people. I want to be able to use my body the way God intended. And I'm really tired of Pelvic floor therapy. It's brutal. It's a trip to hell and back! It's invasive, it's intrusive, it's an invasion, and it's painful. And who doesn't hate that pain scale? You want a number this week? Okay. 7,6,3,8...it hurts every day! I'm used to pain now. It doesn't get a number! Sure, I joke throughout the procedure and my therapist is wonderful, but it's not funny. Not one minute of it is funny.
And all of it is invisible. Even on my face. My smiling face. My happy, funny Facebook posts. It's lonely. Because no one gets it. It's scary. It's never-ending. It's consuming. It's life-changing. And yet, it's bigger than the elephant in the room. It's meticulously hidden, and yet constantly forced out for all to see. Just ask me out for coffee. Or for a walk. Or to a movie. Or to help you rake. Or join a Zumba class. Or come for dinner. Have a conversation about chocolate even. Or any "normal" thing you'd ask a friend. And the answer will be....I'm sorry, no. I hate those reminders. Some days I wake up in a good mood, and then I remember this challenge, and I think, Oh crap, I forgot I have IC.
And yes, I appreciate my life, and I have joy. But I also need this. A letting go of how this affects my giving and my soul. It can become a penetrating idol, a soul-sucking mind trap. I can't describe it any better. If you've ever been in pain every single day for a year, you would know it is very hard to forget it for a day. It is very difficult to be joyful in those circumstances as we are told to be. And yet, as I share my experience, I also share this verse, because I know who walks this with me daily:
"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time"
1 Peter 5:6
Be kind and gentle in other people's lives always. Don't think you know what a person is going through. And if you're curious, ask them! People with chronic and long-term illness are not complaining. Our lives have been forever altered. It's not a temporary thing! You have no idea what kind of elephants that person is carrying, even if it looks like their life is all rainbows and sunshine on the outside. (and I've been told mine does. Don't be fooled by Facebook, friends) And always be thankful if you don't have elephants or if yours are lighter right now. Life can change in just one day.
Blessings.
1 comment:
Ouch! I feel the grind you are going through miss Jami. You have explained it well. May the healing of the Lord fill your body. Amen and amen!
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