A day in the life of me..

cold Most peoples’ daily routines start with coffee and breakfast. A day in the life of a person with CMT varies quite drastically and can be rather challenging. Please let me explain.

If we’re lucky, we had a great night’s sleep, and we need sleep and rest so badly to counter the naturally occurring fatigue plaguing people with CMT. Consistent restful sleep is critical, providing the energy to face the day. People with CMT desperately need lots of sleep. Unfortunately, we very rarely, if ever at all, get a fraction of the sleep we require, almost never, actually. I constantly toss and turn all night, as do most people with CMT. My arms and legs burn and ache, yet at the same time, are constantly freezing cold on the inside and feel extremely restless. Many nights, I just give up on the sandman completely. Many people, including myself, are caffeine addicts – morning coffee makes facing the day without sleep somewhat more tolerable. Most people shuffle into the kitchen, still half asleep and prepare a pot of coffee without even thinking about it. I reach for the coffee filters and the battle begins. My fingers will never separate just one thin filter – the filters all stick together. Wrestling with the stack, I eventually get one or two or some filters to separate. Good enough. I insert the filter(s), struggle with the lid on the coffee container, finally wrenching it off the container, sometimes spilling the contents, sometimes not. People with CMT have very little use of their thumbs and forefingers. A dog could make coffee just as successfully, a raccoon or a monkey probably more efficiently than a person with CMT. Scooping the coffee into the filter is yet another challenge. Precariously balancing the scoop, I slowly fill the filter with coffee grounds, and start the perk, not a matter of seconds, rather, this takes minutes to achieve. People with CMT learn to add precious time to every task.

Beep, Beep its go time! Coffee is ready. Yeah! I pour a cup, nothing quite like that coffee aroma so early in the morning, or that first delicious taste! A little bit of Heaven, especially after a long sleepless night. I grasp my mug, like I’m clutching it with paws, which, pretty much, is exactly what I am doing with my minimal to useless thumbs. Atrophied muscle in my hands renders the mug too heavy to hold. I must actually make a mental note to grasp the mug tightly, even though I cannot really feel it. This is also somewhat dangerous – this is hot coffee and the heat of the mug will burn my hands, but I can’t feel the danger, because I cannot feel the signal of pain. As I cannot feel the pain, I inadvertently forget it could be dangerous. Holding a coffee cup is second nature to most people. Only people with a neuropathy like CMT must mentally tell their hands to grasp the cup while being mindful not to burn their hands in the process.

Now I’m hungry. My favorite breakfast food is cereal. I walk to the cabinet and pull out a new, unopened box. Great, I think to myself, here we go again. Breaking into the glued cardboard is difficult enough but the plastic bag containing the cereal is my true nemesis. The cereal bag and I go to battle several times a week, usually ending in the bag’s utter demise. I completely destroy the bag attempting to open it. This is a typical site gag on T.V. but in real life – it really isn’t all that funny. I paw futilely at the bag which ultimately splits it in two, sending cereal flying, making a mess. If the bag holds at all, it is no longer very useful, resulting in stale cereal next time. Just a day in the life. Right now, you are thinking, “why don’t you just use scissors?” Good question. Stubbornly, for once, I expect something to happen the way it should happen, the way it happens for most people, using no extra steps or preparation. Definition of crazy – doing something the same way over and over and expecting different results. That’s me and those blasted cereal bags. Just once – open easy.

Plastic bags, ziplock bags (without the actual zippers), paper grocery bags without handles, large plastic garbage bags all have their own, special, evil annoyances. Opening bags causes frustration, but that chore pales in comparison to screw off lids on jars. People with CMT break a sweat trying to open jars – heck, sometimes we break the actual jar! For us, removing the jar lid without assistance is pretty much impossible. Those of you with CMT reading this blog are nodding right now. We spend much of our days wrestling with bags, prescription bottles, screw lids on jars, pull tops on drink cans. People with CMT become very Darwinian in their thinking. We gotta be smarter than the container if we want to eat or quench our thirst!

Daily living presents challenges but for every challenge, I manage to Darwin a solution. Incorporating different inventions, simple or complex, help me adapt to each daunting task, be it cereal, coffee, or tying my shoes. My pocket knife rocks. This is my favorite tool. Forgetting to bring it with me everywhere completely complicates my day. Rarely used for cutting, this tool provides the dexterity required for picking up objects dropped on the floor. Coins, keys, anything with a flat ¼ inch height or less are just miserable to retrieve. Without the assistance of my pocket knife, I don’t even bother – the object usually stays on the floor. Unless I’m extremely lucky, bending down to make a quick snatch doesn’t happen very often. More likely, I bend over and make several attempts to grasp the dropped item, running out of breath, all red faced and gasping, then stagger backward, and occasionally, fall. Other people look at me like I’m faking something or drunk. I get so embarrassed and frustrated. People assume I am angry. I’m not mad at all, just frustrated, and embarrassed.

Pull tabs are pried open with anything handy – a key, a fork, a writing pen. This doesn’t always go as smoothly as planned and either leaves me sticky or smelling of the can’s contents. I love my oversized keychain. I mean giant sized keychain — so big, it barley fits in my pocket. My hands can manipulate this monster keychain and I can fish my vehicle keys out of a pocket every time.

Honestly, the very best, tried and true tool I have discovered, a tool guaranteed to always work every single time is tenacity. I never give up. Ever. If I cannot achieve a task one way, I try another way, then another, then another. I will succeed and revel in my earned victory of success, big or small. The victories add up, so the positives add up. There’s always a pony in there somewhere.

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4 comments

  1. I will never shout again, when I cant open a bag of Chips. I have this gadget I bought from a kitchen store to open jars..I am wondering if it may help you. Your prosthetist will need to show you all the tricks to lining up your pin, or pulling on a sleeve or sock or liner….Your bravery is warrior quality. I know the weather is not playing along, but I am praying for an awesome socket fitting.

  2. Timmy, my 6th grade PE teacher told me to NEVER be ashamed to use what God gave you…namely your teeth to do for you what your fingers or hand can’t do…I’ll always remember that! Take care and God bless

  3. I love this and can so relate to all of it. I use my mouse pad from my computer to open jars or other lids. I have been known to take a knife and cut the entire top parrt oh plastic 2 litres when someone forgets and puts it on to tight here. Keep on keepin on.

  4. Yes,Yes,Yes! How long does it take to get dressed? Button as assist tool. It hold the button what about the flap it goes through? Needle nose vise grips. My Leatherman tool. Now I have the button and zipper. Thank you. Very well put.

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