I have something to confess...I am a planner and a list maker, sometimes to the point of madness! I make lists of what I need at a store like most people, though I go beyond that and map out where those items are...and then I go even further, and re-do my list so that my errand running is broken up into sections, starting from one end of the store and finishing at the other. Then and only then, my shopping trip can become as quick and painless as possible. This is only attainable, of course, when a store is familiar to me--if I've never been there before, my first shopping trip is often very tiring...luckily I can quickly memorize a store's layout, so any future visits there will be much easier! Obviously if I work this hard to make shopping a 'painless' activity, I'm not a "window shopper"...and even if I had all the money in the world, I doubt shopping would ever be all that fun for me. Okay...it might be a little more fun if I could just shop for things I wanted, rather than necessities, though I'd probably still map out my list before I left the house!
Maybe you're reading this and thinking I do that too...no big deal. (One can only hope!) Or maybe you're thinking Ooohh, this girl's stranger than I thought! and really, I can understand that response. I actually do think it's a little strange to go through all this trouble just to run an errand, but it's the reality I live in. There are always other factors in my life I have to consider; like the amount of time spent walking around, what I can and cannot lift--whether or not I have help when I need the heavy items (like cat litter,) if there are places I can sit down if I need to...they are all just a part of my existence, and when I do push them aside for the sake of being spontaneous, it usually involves some sort of payment on my part. And payment can involve pain...which to me is very expensive! So in an attempt to keep my payments low, I plan...and plan...and PLAN. And I become too much of a control freak over the activities of my life, unfortunately.
The planning is understandable, even if it's not something you are used to. And I am thankful for the fact that I can be this organized...I think this ability has helped me a lot throughout my life; when I was a teacher and now as a writer. But in the same respect there are things about it that bother me. That word I used a moment ago--Spontaneous--springs to mind. I want spontaneity in my life...there are times when I am so bored with the lists and the planning, I even crave it! But I think in an attempt to control as much of my life as possible (when there is SO much that is out of my control,) I have moved far away from spontaneity, and I can't even see it anymore. I wonder how I can get that back, without somehow hurting myself in the process? I wonder if my brain will even allow it in my life anymore? It seems when any new activity presents itself, before I can just "run with it" something pushes the 'planning' button in my brain, and off I go. I have lists of what to do and what NOT to do, where to go and where NOT to go, and how to accomplish this "spontaneous" activity with as minimal discomfort and trouble as possible...and these lists are created in my head before I can even grab some paper. Being able to paint and be creative has definitely helped me get some spontaneity back, though sometimes it feels like when I set the brushes down I am back in list mode, whether or not I want to be there.
I think it also makes the things which crop up that I can't change, more difficult to deal with. And having a degenerative disability like CMT means that things are going to crop up, sooner or later...cause that's the name of the game! And no list, no matter how organized, is going to change that. I do my best with these situations, adapt where I can and try to accept it when I can't...and I continue to search for healing wherever I can find it. And sometimes I do find healing...and sometimes I don't, and my search continues. Yesterday I was fortunate to have lunch with my good friend (and fellow blogger) Melinda, and one of the things we talked about is sometimes feeling like we just live in our CMT...it's there when we wake up in the morning, and there when we go to sleep. This disability has robbed us of many things, and I realized yesterday that our spontaneity is one of the things we've lost. Maybe not completely, but in a thousand tiny little ways that often add up to a rigidness we don't really want. Seriously...it's like an unwanted, crabby house guest that won't go away!
That being said, I also experienced something else yesterday...I got to relax and 'let loose', and just LAUGH! That's probably one of the most spontaneous activities you can do, I think...that deep, come-from-the-belly kind of laughter that bursts from your lips before you can stop it. It's not only spontaneous, it's very healing! And Melinda really got me laughing hard yesterday, which is something I needed...and I truly thank her for that. The good thing is, I haven't lost my ability to laugh...and there are never any lists involved! So I will continue to face my CMT demon, and hold on strong to that ability...for I am determined never to lose it. Ultimately, laughter will continue to heal me, and keep me standing strong!
I hear ya! I've forever credited a sense of humour as my most important tool to roll through this life!
ReplyDeleteDefinitely...it certainly makes the bumps in the road a lot less bumpy! :-)
DeleteOh so true! And well said! I miss walks on the beach and even going out for coffee. Offers for social outings require a grinding of gears as I check with my many lists and pain levels :). Adding an activity means something else has got to go :)
ReplyDeleteAnd I love what you said about living inside CMT. It feels like a cage sometimes- grrr. But we make the most of it and we sure appreciate fresh air when we get a little break from symptoms :)
Yes, a break in symptoms is always much appreciated, and sometimes a downright shock! And you're right--I do need to 'take an activity away' when I add something, which is a whole other list...blah! Thanks for reading :-)
DeleteI also am a " list - maker " , but not for the same reasons !
ReplyDeleteMine is simply because of a chronic mind disorder / you may fill in the missing initials [ lol ].
As a friend , and avid reader , I try to educate myself with as much information on "CMT " as I can , including reading ..It's your insight , personal accounts , where I learn the most ..... also from those who comment .The concept of having to drop one activity to fit in another , had never crossed my mine !My amazement has always been at your huge smiling face, graceful personality , and giving spirit ! In my dealings with you , both business and friend , you seem to wear that wonderful smile 99.9% of the time .
My wish for you is many many moments of " spontaneity " !
Thank you, Al! I hope there's much spontaneity in both our futures!! :-)
DeleteI just happened to come across your blog. I too have CMT, Type 2 though. I'm not sure what type you have, or when you were diagnosed, I'm assuming later in life based on things you mentioned in this post. I've been living with CMT since I was 4 years old and I'm now 31 years old. I suppose what motivated me to comment was the mention of symptoms. What kind of symptoms are you and, others who commented, having that prevent you from doing activities? I guess since I've been living with CMT all my life, I tend to push through fatigue and minor aches and pains. Just curious to hear others perspective.
ReplyDeleteHi Kathryn...welcome to the blog! I think that is one reason CMT is so often misdiagnosed or undiagnosed--symptoms can vary greatly from one individual to another, and we often learn to push through much of the symptoms and pain we can experience. My symptoms (especially through the past 10 years) have gotten worse in a lot of areas--the biggest being with my back and core muscles. Before that point I pushed through most of it, and though CMT certainly effected me, it didn't stop me from doing most of what I wanted to do. I think now what sometimes stops me in my tracks, is the fatigue and pain I live with daily...and I am still going through a 'learning process' in figuring out how to deal with it, and manage it as much as possible! As far as my type of CMT, I'm still searching for that answer (I was diagnosed in 1996 at age 25 and told that I had CMT, but there are 50 types of the disease, and each one is tested individually...it can often take time and a lot of money to sort through all of them.) I hope that helped to answer your questions, and you continue to read! :-)
ReplyDeleteI am so happy that I made you Laugh! You are always cracking me up with your comments. Nothing wrong with making lists. I do the same, every night before I go to sleep, I write out what I have to do the next day. And then I still forget and wind up at the doctors office on the wrong day.
DeleteAfter the Starry Night benefit we will take a break from our CMT and just have fun! Vegas here we come!
https://cmtnyus.wordpress.com/
Haha...definitely!! Thanks :-)
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