9 thoughts to help you make the best of the in-between times.
“There’s nothing more we can do for you at this time,” Dr. Mackle said. I had been sitting in the upright chair just inside the entrance of a narrow consulting room. I didn’t look at him – hadn’t been expecting those words. I didn’t know how to respond since it never occurred to me that my hepatologist could run out of possible solutions; that I could run out of options. I said nothing. He rested his hand on my shoulder.
The unexpected words hung in the air then followed him out of the room. I was left to wait.
Sometimes there is nothing left to do but wait. The arsenal of medications already spilling out of my cupboards help some but can’t make the problems go away.
So, on the good days I relish life – as much as I can and on the not-so-good days, I just wait. At least, I’ve begun to learn how.
\Weyt\ Verb: to look forward expectantly; a state or attitude of watchfulness and expectancy; to remain in a state of repose until something expected happens.
The way I see it, waiting doesn’t mean not doing anything. It calls for strenuous mental and emotional spunk and is probably one of the hardest things you’ll ever have to do.
Unfortunately, waiting is not our default setting (it feels too good to be up and getting things done). But you know what I realized? Waiting doesn’t have to mean time-wasting. There is a lot to be learned during the waiting period, if we adopt the right attitude.
Waiting unfolds patience and humility and courage and tolerance and faith and . . . a whole lot of other stuff unique to your situation.
So switch off the helplessness of ‘victim’ and switch on the authority of learner. Swap out the ‘poor-me‘ whines for the ‘what am I supposed to learn from this‘ questioning.
Switch off impatience and switch on contentment (not to be confused with hopelessness). It’s okay to wait.
Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! Psalms 27:14
Switch off anxiety and switch on anticipation. Instead of the query ‘when?’ make it the qualifier of your goal – the beginning of your plan ‘when I . . . .’ And visualize yourself as you will be.
If you don’t like where you are, just picture yourself where you want to be. Auggie in Wonder.
Every day won’t be a “good” day, especially with a chronic illness.
Here are 9 thoughts I think will help you on your way.
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No. I don’t expect to re-appear after more than a year of silence and just pick up where I left off; crawl out of the woodwork without so much as a ‘beg your pardon’ or ‘by your leave.’
No. I don’t expect to magically show up and ‘skin my teeth’ (grin from ear to ear) but offer not a single word of explanation for my absence; nothing in response to your ‘I wonder what happened to that sunshine woman?’
I didn’t plan on going AWOL so please pardon the interruption.
Let me try to explain. I think you deserve more than some perspicuous alibi, some neatly pre-packaged excuse like writers’ block or brain-fog.
The thing is I’m not sure I even know what really happened!! I have my theories but still trying to figure it out.
So, what happened? I found myself struggling with life.
Struggling to get out of bed in the mornings because I’d spent all night counting sheep trying to sleep, (me trying to sleep not the sheep), then struggling to stay awake all day becauseI can’t stand missing out on the sunshine but being too tired to do anything but vegetate on the sofa having lost interest in even trying to convince myself to do anything.
Struggles are required in order to survive life, because in order to stand up, you gotta know what falling down is like. Unknown
I found myself struggling not to lose weight (all the precious pounds I’d gained over the last two years) because I was constantly feeling ‘as sick as a dog‘ and couldn’t force myself to eat more than a bite (literally), despite all the children starving in Africa (sorry Ma).
I’m rambling aren’t I?
Let me try again. So, what happened?
I had been calmly wading through life (you know my general status – fair to fine with occasional scattered showers) then . . . stagnation. A thick, gooey stagnation sneaked up on me like fog in a gully, tussled me off my feet and
Sometimes just surviving from one day to the next is all you can do. That’s okay because only the strong survive. Unknown
I just laid there. . . passively. And must have been doing a real good job of it too, ‘cause I was getting a whole lot of nothing done.
Needless to say, doing all that nothing came with a hearty dose of guilt which in turn conjured up even more nothingness! Hence the inevitable interruption for which I am now beseeching your pardon.
“Do it for her,” my husband calmly said one evening after dinner. I’d been whining, again, (yep, an emotional malfunction) about turning down yet another lunch date with a friend (and social withdrawal too!).
“Don’t do it for you, do it for her.” That was as much he cared to elucidate. But the sparse words spoken so gently in his casually, unassuming manner was all it took to break the spell and jolt me into the reality of my need for an attitude adjustment.
Only a life lived for others is worthwhile. Albert Einstein
Somehow in the struggle to maintain myself, I’d lost sight of my life’s mission – not merely to survive, but to thrive, just as Maya Angelou said, and that meant being there for the people I care about with the people I care about.
5 Suggestions to help you navigate the difficult times.
Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.
You know what? Even the luckiest of us has had to deal with some serious bumps in the road, and if you haven’t yet, you will. That’s just the way life works. I didn’t make the rules – just saying.
Now it may not be your typical ‘take-your-black-suit-out-of-the-mothballs’ kind of stuff, not life-threatening or anything, but a major pothole none-the-less.
Take migraines for instance. Some people still think, migraine – no big deal; stop being a wuss, suck it up, swallow two Advil and get back to business as usual.
In case you, my reader, are a bit backward when it comes to “migrainology” (yes, I just made that word up . . . but what the heck, I live in America!), a migraine is not just a bad headache. It’s a neurological disease – changes your brain, the way it works and everything; one of the top 10 disabling diseases and can lead to stroke and coma.
Now that is tough sh*t right there! I won’t even want to think of dealing with that, yet millions deal with it daily.
I guess what I am saying is that other people’s challenges often seem much more arduous than your own but the thing is, it’s all relative. There’s no comparison. Don’t think for one minute that because I have AIH and you just have a URI, you have no right to be heard.
So, whether it is PMS or CFS, EDS or HIV, SAD or TTH (ABC, XYZ or any of the myriad combinations of letters), if it significantly affects your quality of life; if it sometimes drives you to the brink of insanity/despair – it’s tough stuff. How do you cope?
Here are 5 strategies that have been working for me.
My first two months as an ostomate; facing the challenge with a sense of humor.
So, it’s been a while – 8 weeks, 5 days, 5 hours, 11 minutes, since I last posted anything. Yes, I have a dang good excuse. No, I am not getting into it now; enough to say there was a major, medical crisis.
Right now, there is something I’m dying(wrong word choice) eager to tell you about.
I gotta tell you about ‘Jen’ – my newest acquaintance, closer to me than anyone or anything has ever been or will ever be. And I say that with mixed feelings.
Living with a life-threatening chronic disease ain’t no sweetbread and ofentimes the fixer-upper is big and ugly and all up in your face – not to be hidden or side-stepped. Then you have to find a way to face it head on while keeping your pride and dignity intact.
The first time I saw Jen she scared the bejeezels outta me – not at all a pleasant meeting. To say she repulsed me would be a gross understatement. I barely acknowledged her presence, turned my head away and did my darndest to un-see what I had seen; to forget that she even existed – as if that were possible.
You see, Jen is my newest body part (for better or for worse, for richer or for poorer and all that stuff); my brand-new, strawberry-red stoma – standing about 25 millimeters tall and 35 millimeters around. Yes, she takes up a lot of real estate on my belly.
Now if you are like I was before this last crisis of mine, the word stoma will probably take you back to high school plant biology: stoma – one of the pores on a leaf that allows plants to breathe. Well, Jen is not that kind of stoma. Let’s get on the same wavelength here.
When the doctors got done snipping the cancer out my gut, they deliberated, then concluded that my best chance for long term survival was not to try to reconnect the two pieces of intestine that were left. Instead they did an ileostomy. That means they poked a hole in the abdominal wall and stuffed the end of the small intestine through to the outside, so digestive waste products would be able to leave my body via that new route. Gross, I know, but what can I say?
Sh*t happens! Whether you want it to or not.
So, Jen must always wear her little baggie (ostomy bag) and guess who gets to clean up????? Why none other than yours truly. Beginning to see why I have such mixed feelings about Jen?
But she is my lifesaver, so I guess I should be grateful . . . and really I am. Dr. Russ warned that she MAY have to stay with me permanently, but, there is always that possibility that one day we may part ways – dare I dream of it.
Anyway, I am earnestly trying to get along with Jen.
For starters, I named her; sort-a figured that if we were to become intimate friends, we should at least be on a first name basis. That would be a logical first step for any long-term relationship. I mean, how can you live with someone 24-7 and don’t know what to call her?
Yes, my stoma is a ‘she’. I am sure of it – the incessant yammering, the constant compulsion to remind me of her presence, the irrepressible need to voice an opinion on just about everything – especially food. She is perpetually grumbling and squawking about what, when and how much I should eat. If only she weren’t so bossy!
She gurgles when I try to sleep on my back but groans when I roll over on my side; gripes when I bend over to tie my shoe laces and balks about the way I wear my seat-belt, not too low, not too high, just the right distance away from her. If only she weren’t such a stickler!
High maintenance? Definitely. And she has no qualms about butting into my private conversations (the busybody!) – just ask my husband, he’d back me on that score.
We go shopping together, Jen and I, but she doesn’t pay for anything (the cheap flibbertigibbet). The truth is, she insists on going shopping with me – as if I can even stop her – and I don’t mean that she just tags along. She dictates what I should buy! I must select loose fitting blouses – nothing that would make her stand out too much as she is very particular about her appearance (I am too). Pants and skirts must have an elasticized waist – nothing to squeeze too tight, her majesty demands comfort. If only she weren’t so fussy!
Recently, I’ve found myself shopping online for toiletries just for her, and outfits – comfortable and tastefully colorful – apparel that she can lounge around the house in!
I have to admit though, that shopping for Jen has moved me one step closer to accepting her presence in my life. I think I may even smile when the UPS guy drops ‘the box with a smile’ on my doorstep.
We have become pretty close now. I actually made a few outfits for her myself and enjoyed doing it – coordinating outfits for me and my new bosom buddy and possible life-long pal. Sigh.
Jen and I have been together almost 2 months now and beginning to have some good days; days when we’re not bickering, and peace reigns for a couple hours at a time.
I keep trying to learn as much as I can about my stoma and the world of living as an ostomate (someone who has a stoma) – not just knowing, but really understanding the ‘how-to’s and the ‘why-not’s; and being able to look past the ‘what-if’s and shouldn’t-I’s.
Scouring the internet, I was relieved to find that my situation would no longer be considered a true anomaly. In the USA alone, there are over 130,000 ostomy surgeries yearly (I couldn’t find stats for Barbados). A huge community is out there sharing similar experiences. There is even an internationally recognized “World Ostomy Day” (first Saturday in October).
I think I am finally past the sentiment (well, almost) that Jen is one of those ‘dirty little secrets’ that must be kept in the closet at all costs. I am growing in appreciation for all she is doing to keep me alive and well. So what if I always have to foot her bill?