Reborn

Hectic Life Survival Strategies: How proper prior planning prevents piss poor performance.

Next week, I’m going to need twice as many spoons. No, I’m not preparing for an ice cream social, just a crazy week full of too many obligations. If you have a chronic disease, and are familiar with spoon theory, you know what I mean. For the rest of you, spoons represent the energy and effort needed to get through normal everyday things, and just like your kitchen drawer, I wake up to a limited number everyday, that must then be used to dress, cook, eat, and do whatever chores and activities I need for the day. The big kicker? Some days, I wake up to find someone took ½ the spoons! Not cool! This means there will be things that won’t get done. Or, that I will have to borrow against tomorrow’s spoons to get through today, leaving me with less spoons for the next few days as I try to get back on track.

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Looking at the schedule for next week, doctors appointments and graduation activities, on top of normal life, I can already tell, there is just no way I have enough spoons for that. So now what? What does one do when they know they are going to be in over their head but needs to take that plunge anyway? Look for floaties? Seems reasonable. Try to charter a boat? Even better. If the issue were water, how easy I cold solve it. Unfortunately, it is not so simple, the issue is energy and a mobile body, both quite limited resources in chronically ill me. So, gathering real floats and boats won’t help me, but some metaphorical ones, well, that just might work.

So, I am making a plan. A plan to conserve spoons and just keep swimming. A plan that includes throwing a few things overboard if I have to, doctors appointments can be rescheduled, graduation is coming, rather I am ready or not. And boy is that going to take a lot of spoons. My baby is graduating. Emotional much? If you know chronic disease, you know stress and other negative emotions, like the deep deep sadness of a baby about to leave the nest, can turn up the fires of chronic disease. So, I am going to be stressed, emotional, and have too much to do, see why I’ve been thinking so much about my spoon supply?

So, first, floaties, I wasn’t kidding, they will help. So what’s a floatie when you have chronic illness? Rest, exercise, nutritious food, and herbs that will reduce pain and inflammation. Being sure they are all included in my plan, will help increase that daily spoon supply. They will help me stay afloat, even if I am technically out of spoons.

Next up, preparation. Because, as a cousin of mine loves to say proper prior planning prevents piss poor performance. It’s true, planning ahead for the way too busy times can be a massive help. Anything I can do to get ready for next week, this week, will save energy for the things I can’t do ahead. Laundry, housework, gathering things needed for graduation and the celebration of the amazing grad, grocery shopping, meal planning, all of those things are on the to do list for this week, so I don’t have to find time and energy for them later.

Naturally, with a big to do list and challenging week ahead, I’m going to need help. Learning to delegate, to allow people to help get things done, has been critical in my healing journey. Now that I know I don’t have to do it all to get it all done, I am much better at reaching out and asking for help. And my awesome tribe always comes through. As we gear up to celebrate the accomplishments of one of our own, I am certain to have all the help I could want or need.

Although I know it will definitely be a challenging week, with a little planning, prep, and assistance I am sure I can get through it. If all else fails, I’ve got a boat reserved for the party at the end of the week, you would probably call it a wheelchair, I see a way to stay afloat, even if I’m completely out of spoons.

Do you bite off more than you can chew? 5 Signs you might be tenacious too.

1. You hate asking for help. When you are truly tenacious, asking for help feels like failing. There is a part of you that expects you to be able to do it all. It is disappointed when you cannot.

2. Offers of help piss you off. It doesn’t seem to matter if you really need the help or not, offers of help tend to trigger irritation. After all, you think you can do it (see #1), what makes them think you need help?

3. The words “you can’t do that” sound like a challenge. When you are tenacious, someone telling you what you cannot do sounds more like a dare than an honest statement. You can do anything, who are they to doubt?

3. You lug all of the things at once. Tenacious people are famous for overloading things; their schedule, their to-do list, their arms when they fetch the groceries. Being tenacious means you are quite sure you can handle it all.

4. DIY doesn’t intimidate you. If you look at something and think, I could create that, you might be tenacious. A willingness to try anything once and a belief that you can do anything you try hard enough to do mean you often think to yourself, I could do that.

5. You’ve injured yourself doing something beyond your capabilities. Tenacious means limits don’t apply, until they do. These lessons are generally painful, as the truly tenacious will try until they prove they can’t. This kind of limit pushing often ends in injury.

Riding the roller-coaster called life

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Ever feel like your life is a wild roller-coaster ride you have been on for waaay too long and you’re tired and a little nauseous and would just like the ride operator to let you off the train? That’s me in a nutshell lately. Its just been one thing after another. One stress-or is barely handled before the next rolls in, when they aren’t attacking in twos and threes. I feel like a five year old after a long day at Disney. I’m tired, I’m cranky, the amusement park visit has been way too much for me and I’m ready for some rest! Unfortunately, this park requires 24-7 attendance and there is no escape. Lovely.

SO, now what? Having determined that the stress is apparently just going to keep coming at me, I’m left looking for a plan b. Can’t avoid it. Better tame it. Easy, right? Sure. Just as easy as herding butterflies.

Like butterflies, stress is seemingly erratic, but does tend to have a purpose. As much as I do not want to be fixated on my health issues, unpaid bills, or the needs of my kids not being met in school, I do need to be aware of the problems. My brain and I just seem to disagree a bit about what aware looks like. I think aware means I see the problem and steps are being taken to deal with it. My brain appears to believe we can’t stop turning the problem over until it’s solved completely.

So, I alternate between having a plan, feeling like I know what I am doing, and feeling like I am f*cking it all up and it’s hopeless anyway. I’m confident and unsure. I’m certain, but also uncertain. I’m the crone and the maiden, informed and naive, lost and found, all in one. The coaster isn’t slowing, but staying on the tracks at least, there is some comfort in that.

Science, what is it good for?

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Everyday, without fail, I see people arguing on social media. The subjects range from politics to daily life. One thing they share, somewhere in the thread, you’re likely to find someone holding up science as their proof of righteousness. So, what is science? Is it the great argument end-er that we are looking for or yet another reason to spark debate? If you are a scientist, you better have answered the latter. If you, as a scientist believe science works in absolute truths, kindly turn in your lab coat, you’ve missed something really important.

Science isn’t fact. (Cue comment section blow-up) Sorry, as a science-minded person, I truly understand, you want to know the truth, unfortunately, the most science can ever offer is an educated guess. The one concrete fact about science, every single bit of information generated is theoretical. Science tests ideas, it allows us to observe, calculate and theorize about what we are observing, the one thing it will not do, is generate absolute truths. The question is, why doesn’t it? The short answer is, it can’t, but why?

Everything is extremely complicated. There appears to be absolutely nothing on this earth that is influenced by only one or two easy to manipulate factors. It took early scientists little time to realize the variables influencing any one phenomenon are practically infinite, making concrete findings in science fairly impossible. To put it simply, there are far too many things to measure to know that what we are measuring is actually the cause of the thing being studied.

Consider meteorology, no, I’m not talking about TV weather people here, though some of those are indeed meteorological scientists by training, I’m talking about the folks behind the scenes, who give your local weather person their information. Those people are scientists. They spend their days compiling collected data, running simulations and models built from decades of data and observation, only to be wrong approximately 20% of the time. In a field that has literally thousands of scientists a day contributing to its advancement, we really expect them to do better than that, but the truth is, they are doing the best they can hope to, weather is infinitely complex. So is everything else.

In an infinitely complex world, science will never offer concrete facts. The best it has to give is theory. So, what is the point of science then, if not to give us all the answers? The point, is to know more. Every single experiment carried out, brings us more information. Every theory proven wrong, is a step closer to a better understanding of the world. Although science may never lead to absolute truths, it does offer us insight. Science may never allow us to determine when it will definitely rain. It does, however, provide us with a pretty good idea of which days we might need an umbrella.

Learning to Lean

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When you are born stubborn and independent, it is hard to admit when you need help. So, when chronic, disabling disease comes knocking, it can be a particularly challenging house guest to adjust to.

My mother tells me, when I was a small child, offers of assistance with things like tying my shoes where often met with loud cries of “MYSELF” from my tiny, tenacious self. While I have learned to curb the urge to shout about it, that fiercely independent spirit is alive and well. She’s served me well over the years, getting me through college, helping me through whatever road blocks and detours life has sent my way. Facing disabling disease as a fiercely independent person however, is not so amazing. In the face of disabling disease, that independent spirit can become a road block itself.

I knew when I was diagnosed with Rheumatoid Arthritis (RA) that it is a chronic degenerative disease, meaning it isn’t going anywhere and it’s going to slowly destroy stuff. I knew eventually I’d be faced with limitations. Eventually. I wouldn’t say I was okay with the idea, truthfully, I was crushed, but I did at least believe I’d be an old lady by then.

In walks reality, the eternal bubble-burster. Bringing with it fun facts like my RA is the very aggressive type and oh, by the way, sounds like it started in your teens so you’re quite a bit farther down the road than you thought. Turns out, as far as RA is concerned, I am already an old lady. At the very least, the arthritis remodeling is way ahead of schedule.

So, along comes disability. Remodeled and disfigured joints that just can’t do what I want them to. Now Ms. Independent has to learn to accept that she needs help, and then learn to ask for it. Over and over again. It is not an easy transition. I’m not sure I will ever be fully comfortable with it, to be honest.

Asking my people (and complete strangers) for help, however, feels like a very small challenge compared to that of using assistive devices. My Dr suggested a cane 6 months before I bought one. I didn’t want to need that, so I avoided using one. Seems silly if you’ve never had to face it. Is silly really. If you need a cane, you should obviously use one, but making the choice to pick up the cane was a big step for me. It was admitting that I need help. It was accepting that damage has been done. To my stubborn, independent side it felt like a massive defeat, and it announced to the world that I am broken.

As the RA continues to slow me down, I’ve had to learn to lean. On a cane. On a walker. On the arms of my loved ones. On two crutches. Three years later, I am accustomed to my trusty sticks, but secretly? I still believe someday I might not need them.

Anxiety and Intuition

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Anxiety and Intuition. Has kind of a nice ring to it, flows well, doesn’t it? Someone who didn’t speak English might think that was the title of some classic love story. A tale of a love that overcomes some epic struggle. Unfortunately, they are the epic struggle, inside my brain, either competing with or feeding off, each other. Both scenarios are challenging.

When anxiety opposes intuition, the battle is a series of small skirmishes. With anxiety holding up some what if, some might have, some worry, and intuition calmly and rationally (with logic whispering words of approval and support in her ear) debunking all that anxiety tosses at her, often as quickly as anxiety can whip it out for debate. With intuition as an opponent, anxiety cannot win. Eventually, anxiety will tire of digging for new supporting information and concede that intuition is probably correct, retreating to regroup and find more on that subject (or something else to worry about). It is an endless cycle, an infinite, loping dance. While anxiety appears to take the lead, intuition, with the help of her sisters logic and reason, will eventually gain control. More dangerous, by far, are the times anxiety and intuition are on the same page.

When anxiety and intuition agree? That is when the true challenge comes. The pair of them together can drag one down the rabbit hole into the darkest depths. Unfortunately, this happens anytime intuition pings on something negative. The worse the inkling, the quicker anxiety is to chime in, “yes, yes, oh definitely, how wonderfully terrible.” Give the pair of them some supporting facts, and they will open a pit of despair so deep, I need every tool I know how to use to climb back out. That happened at a doctor’s appointment this week, or catalyzed there, I suppose, is more accurate. They began to team up on me a while back, and, luckily, the pinnacle of their hysteria didn’t hit me until the wee hours of the night, when they woke me in a frenzy.

For a few months now, I have not felt right. If you know me and my medical issues, you might be laughing and saying, well, you aren’t quite right, and yes, that is true. On the best day I’m definitely a solid mess, but something is wrong in a new way. Intuition has some ideas. Or is that anxiety? See, when they team up, it can become really hard to tell which voice is which, and who started this whole mess anyway? Did intuition throw the idea on the table first, or is this one of those rare occasions when anxiety triggered intuition and gave it a push? It is a chicken vs egg kind of question there is no hope of answering at this point, the Doctor just said the exact word this pair have been whispering about for months.

There it is, manifesting itself outside of my head. This time it definitely didn’t come from my anxious mind. My heart leaps and falls. This is not the only thing he says, of course, there are other things that could be causing my issues, but those blur into the background as my mind locks onto that one word. My mind races through ignored symptoms that I’ve lived with for I cant honestly say how long. How long have I been having these issues? The fear stabs deeper as my mind casts back, seeking the start. It’s far. Excellent coping skills and symptom management strategies have let me ignore this for months. A cacophony of thoughts attack me one after another in an endless barrage, procedures skipped, appointments missed, the long list of dangerous medications I’ve used in my battle.

Telling myself i cannot panic until after I have answers, (pretty funny lie for someone with anxiety) I struggle to focus on making a plan and leave the office with a mind abuzz with questions I’m not ready to wrestle with. The one thing I’m sure of, Intuition and Anxiety are definitely on the same page now.

Knowing the powerfully destructive force the two become when united, I shift very quickly into anxiety management mode, pulling tools from the kit I’ve gathered over the years, seeking solace so I can get through the rest of the day without spreading my panic to loved ones. I’ve found myself strapped to an anxiety and intuition fueled bull, if I don’t get on top of it, it will kick my ass. So, hold on tight and make it my bitch it is, at least until I know where we are going.

Wait, hope, work

One of the hardest parts of a failing body, for me, has been the many ways it limits my ability to do things. I miss going for a stroll in the woods to calm my nerves, whenever the need arose. Late afternoons spent wandering around my yard, weeding plants, while chatting on the phone. The freedom of climbing into the car and driving to the shore to clear my head. I even miss spring cleaning, scrubbing, dusting and polishing, and the exhaustion and satisfaction of a job well done.

Long gone are the dexterous hands that could craft and fashion things for necessity or whimsy. The powerful, capable body that propelled me through the dancing waters and up hillsides for vistas that stole what was left of my breath, now struggles with daily life. I miss an active life, pining for it, like a long-lost lover, always hoping some magical twist of fate will send it back my way.

Some days that hope seems fanciful and beyond reach, others the paths that might allow some old freedoms are visible, if faint. Because whatever else disability might be, it is, always constraining, limiting. Yes, I know there are a million ways determined, disabled folks have found to get around their limitations. Living in an age with so much amazing technology is a blessing. Yet, most adaptations require not just mindset but also means. I’d have an awesome off-roading power chair to carry me to the woods tomorrow if it were up to me. But, realistically, that is not something that is so easy to obtain. (It hardly even exists, sadly.)

SO I wait, and I hope, and I work. I wait for the day when this disease is in check, for the surgeries to repair the damage, for the healing that will allow me to grow strong and capable again. I hope for a future without such limitations, for the means to change my situation, and the strength and determination to get me there. I work to strengthen and protect the body I have left, to create new, loving habits, to find the pathways that will lead me back to my old self, capable, adventurous, inventive, industrious, tenacious ME.

Anxious ME

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Photo Courtesy of Redefining Images

I’m a nervous mess, and it’s my own fault! There, I said it. Out loud.

That’s right, I’m a ball of anxiety this week. Almost entirely self-inflicted anxiety. I made the choice to step out of my comfort zone, and now, here I am looking for shelter and wondering why I wandered out here where I’m so exposed.

Hermit life was working. Sure I get lonely and bored, living the home-bound hermit life, but I also love the infrequency of my social anxiety flare ups. Something most people probably don’t realize about me, I have social anxiety. I hide it really well. Mostly by avoiding situations that make me want to bolt, vomit, or both.

While social avoidance certainly does minimize the frequency of social anxiety episodes, it isn’t doing a thing to make it actually less severe. SO, I decided I want to let it go, to outgrow it once and for all. To make myself face it and tame it. It seemed like a really great plan too, until the reality of what I’ve done started to sink in.

I planned an event and invited the entire community. (Gulp) Alone. (What was I thinking?) I decided I wanted to host a community family game night to help raise a little money for a neighbor in need, while promoting my side hustle, without being a sales lady. Clever, right?

It would be, if not for the voice in my head that’s been non-stop for the last week…”It’s getting closer”, “what if no one shows up”, “what if a ton of people show up”, “what if you don’t have enough food”, “what if it’s a total flop”, “what will people think”..the questions and concerns from that sector have been non stop and NOT helpful.

That’s the trouble with anxiety, all the worrying in the world won’t solve problems, real or imagined. It is one of the most useless things my brain does. It makes me feel small and out of control. Less than. Not enough. Especially when I have to face ‘the masses’.

Of course, that’s why I chose to push my limits by having an event, I knew it would seriously push me out of my comfort zone. Like I said, this is self inflicted. I made this bed, now I must lie in it (ironic, as sleep is laughable when anxieties run high).

So, lie in it I shall. In three days, the event will be here.

I’m sure it will be fun.  Well, part of me is anyway. The part of me that is confident and fun-loving knows that one cannot really fail at hosting family game night. If anyone at all shows up, fun will be had. With a few confirmed attendees who love me, I know that will be so.

Now if only I could convince my anxious side of what reasonable me knows.

My Tribe

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There are good ships, and there are wood ships,
The ships that sail the sea.
But the best ships, are friendships,
And may they always be.

-Irish Proverb

In a life that has gone anything but straight and easy, I am incredibly blessed by the tribe of family and friends who love me so well. I always knew I was a lucky girl, to be loved so, by such wonderful folk, but I never really appreciated that as deeply as I do now. Always there with a helping hand, a steady elbow, and best of all kindness and understanding, my tribe gets me through even the toughest days.

Without this wonderfully varied, loving, foolish tribe of mine, I would be adrift on an endless sea of depression. They are my lighthouse, saving me from dashing myself upon the ledges, my safe harbor in stormy weather, my life raft when the ship goes down. As I drift along on the tumultuous sea of life, they are my sanctuary.

My tribe is solid full of people who lift me up on the down days. People who cheer my every success and listen to every fear and failure. They get me to appointments, take me on trips, bring me food and beverages, help me peddle books, and jump in when I have a big idea that needs many hands to become a reality. They talk me down when I’m overwhelmed and lift me up when I’m floundering. They remind me that I am awesome when I forget. They are my sounding boards, my cheerleaders, my allies in life, my tribe.

Have you found your tribe? People who love you. People who lift you. I hope you all have. You just never know when you will need that life raft.

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