Sorry for the lateness of this post, things have been a bit stressful here this week. I really don’t like to talk about what is going on with my EDS experience, instead focusing on ways to get along in a fashion that is beneficial. Sometimes, however, it is not possible to do one without the other.
So, today I’m going to talk about lists. If you know me personally, you already know that I’m moderately OCD in certain areas. One of which is lists. I make them for all sorts of things because I find them useful. I list things I need to pack for vacation to avoid forgetting something. I make a menu and a grocery list every week so that I only by what I truly need. I make lists of things that need doing, bills that need planning for (like car insurance), my husbands vacation weeks, yarn I have, knitting projects I’ve done, etc. I think, at the very least, I could easily be labeled ‘organized’ in that department, just don’t look at my sock drawer or closet. Sometimes I even make lists within lists. Such as the grocery list. I frequently add a list of coupons I have, where they are good at (such as pre-loaded ones on loyalty cards) and paper clip any printed ones to it.
Why? Well, I like efficiency. I find it a tremendous waste of time to wander around a store trying to recall what I have in the freezer compared to what we might want for dinner. With EDS and the wheelchair, shopping is already very challenging without adding that to it. I like to go in, get the things on the list and get out. You might wonder why I do the grocery shopping by myself. It is for the same reason, efficiency and trying to make it the least stressful on my body as possible. You see, having someone along slows me down, and because they cannot read my mind, I’m always waiting for them to catch up. In the hubby’s case it’s a proven fact that when he goes along the grocery bill increases $20 to $50. I also insist on bagging it myself simply because the average person has absolutely no experience with doing things from a wheelchair. This lack of experience usually results in the over packing of bags, making them far too heavy for me to manage by myself. It isn’t their fault, it’s just a lack of experience and I sincerely hope that none of them ever have to gain that experience first hand.
I feel the same about packing for vacation. I start the list early and add to it as I think of things so that come packing day, I’m good to go. Unlike my husband who waits until the last minute and just randomly throws things in a bag. I think every trip we have ever taken has included a shopping stop because he forgot socks, or undies, or undershirts, etc. I’ve learned during our marriage that there is really nothing I can do about him doing this. So I don’t stress, or try to help him pack (which is always met with ‘leave me alone’) and I don’t say ‘I told you so’. Basically, I cannot impose my sense of orderliness on him and trying to do so only causes headache and arguments. I also make lists about routes and places to stop, nearby hotel prices, activities in the area we might want to consider. For years it was a tug-o-war between us. I wanted to know where we were going to stop so I could get the best price and place. He didn’t want to think about it and would say it didn’t matter, we’d stop where we’d stop and be done with it. After years of this, I said okay and just didn’t plan anything. Let us just say that it was a cruel way to teach us both a lesson. I learned that it wasn’t so bad being unscripted. He learned that he relied far more heavily on me to plan and therefore make it easy on him, and save us a significant amount of money vs ‘at need’ hotel rates. We compromise now, meeting in the middle of unplanned and planned, and it works beautifully.
Yesterday, for reasons I am not at liberty to discuss, I was forced to make a list that I didn’t want to. I’m not talking about a list ‘ten things you need to do but procrastinate on’. I was forced to verbally list every single thing that I have lost due to EDS, under oath. So no skipping or fudging or avoiding allowed. I told myself that it wasn’t a big deal, to use my usual humor to get through it. About for items into the list, my humor failed me.
Hearing it, laid out bare for all of them to hear and having it transcribed onto a permanent legal document was like, well, it was horrendous. It was emotionally devastating in ways I could never have predicted. I am not going to list the things here, once was enough, and as I said before, I do not like to linger on the negative side of EDS. Hearing it, in my own words, some how made it more real, more devastating. It’s an area that I usually gloss over and ignore as much as possible, as many people with chronic conditions do. It’s one of the ways we are able to maintain a sunny attitude and not go around with the ‘I hate the world’ thundercloud over our heads. For the geeks out there, it was like Luke walking into the cave to confront his worst fears. In fact, it was so horrendous that had to struggle hard not to let it show. It was so emotionally draining, that by the time I was done I was utterly exhausted. I felt it down to the depths of my heart. An pervasive sadness, some what akin to morning. Which, I suppose it was, morning the loss of parts of my life.
I was emotionally and physically exhausted, and apparently I looked it. I was questioned as to my ability to get myself home safely and in the end was required to call one of the concerned parties to advise them that I had, indeed, arrived home safely. For the rest of the afternoon I was in a sort of brain fog. My mind was chewing on this list, arranging it, rearranging it, adding to it, and attempting to find a way to file it away in a book that would be placed on a shelf in the deepest (and unvisited) part of my mind. I caught myself looking off into nothingness and just letting my mind do its thing, because it was going to do it anyway and trying to stop it would only prolong the agony. This lasted straight through to the morning alarm, when I had to beg off getting up and making breakfast for us. I stayed in bed until 10 or so, got up and took a shower, trying to wash away the last remaining vestiges of scar paper.
After a while of more zombie like brain fog, I gave up and went out, weeding in the flower beds for several hours. Which actually means I spent time scooting my garden blanket from spot to spot and tossing weeds into a bucket in between long bouts of just sitting there absorbing the positive energy of the nature around me. Something about that always seems to recenter me. I also figured that writing about it would be cathartic in its own way, hence this post.
If you made it this far, thank you for reading. Your attention is appreciated and I hope I didn’t bore you too badly.
As always, any questions, comments, suggestions, or opinion sharing is welcome.
TH
No comments:
Post a Comment