Under Water.

I need to spend more time under water.

Last Monday I returned from a trip to Miami where we celebrated a few things, including my birthday. Thirty one- the best yet! Maybe it was a birthday present from my central nervous system, but my body held up pretty well for me during my stay there. I’m also a little better at saying no to certain things when I know I’m close to crossing the invisible line. My threshold or whatever. Anyway I was able to partake in some awesome things that I dont’t always have the health for. I told my brother I wanted to snorkel for my birthday and he assured me this was not a problem.  At the beach I submerged myself in the ocean and was immediately comforted by it. Water in general has always felt healing to me, but a warm ocean in the summer is at the top of the list. We could have spent all day out there. All day and all night if my body permitted it. There is something truly holy beneath the surface. I like the muffled silence and spotting darting fish and pretty much anything that moves. We saw so many different types of fish, and every time we’d spot a school or something I didn’t recognize, I’d make my brother Nick come to the surface and tell me what kind it was. I’d repeat it out loud, then we’d go back under. I’m really terrible at remembering the names but I’m trying to learn. I’ve already forgotten so many, but I can say with certainty we saw a crap ton of huge, colorful parrot fish, some barracuda, and a bunch of Nemos and Doris. (Technical names) It was Heaven. My three-year-old niece Olive requested that we find her a starfish and we both searched diligently and came up short. But my brother did find a baby sea turtle, and that was pretty righteous.

unnamed-2 unnamed

Isn’t he so cute? Anyway we came back to shore and had lunch, but most of the time I just kept thinking about getting back into that water. It’s almost Church-like swimming around down there. Somehow in spite of the beaming life everywhere you look, theres a stillness to it. Everything slows down and feels at ease–within me, anyway. I’d like to spend more time in the ocean, specifically underwater. I do well there. I think that’s my goal for this year.

Inevitably all that activity ended me up in a week-long hibernation for the last six days. It’s pretty normal to crash after I travel anyway. And eventually all the extra “curriculars” would catch up to me physically. But I was grateful to hold up for as long as I did. It’s funny, you’re always calculating with this illness. Saying yes to one activity usually means you’ll have to say no to some other one tomorrow or the next day. You’re always “borrowing” energy: allocating it as if it were a monetary budget. Going over, or spending too much, means you’ll pay. So you’re always considering cost and reward and whether the consequence will be worth it or not. You don’t always get it right, but you get better as time goes on. In the case of swimming and snorkeling and fishing that day, totally worth it! Still, I think there is a better way to navigate this illness than living the “push-crash” lifestyle. Doing what you want for a certain amount of time, and then spending at least double that amount of time in bed in the future. Most CFS’ers live this way, not because it’s the best or right way, but because it’s A way to at least do some things and not live your life in bed. Anyway, I hope to discover a more sustainable way to go about this, but it works for now. Kinda sorta. You get me.

On another note, I keep doing this thing that I’m trying to stop. I write and write and write and then I edit and edit and edit and then the essay goes in new directions and I want to keep everything a decent length so I start over and consequently end up with 6 different half-written, diligently edited posts, none ending up on the blog. It’s a pretty stupid system and I’m going to try and stop doing things that way. Sometimes my idea about how I want things to look or turn out hinders my goal which is not just to write well, but to write consistently and allow part of what’s happening in #marys sick life to inform my stories–even if what’s happening is boring or sad or awesome or mediocre. It’s a continual lesson in letting go that I’m still trying to grasp– write things out and then let them go. Although it’s easy to mistake for editing, I think I often look through my own words trying to take on the role of reader instead of writer, and I develop this anxiety that I’m not getting through accurately or perfectly representing myself, so I hold off on publishing. But I know this is silly because all I can do is be who I am and write what I know, and if I’m judicious about that then I don’t need to worry about the rest. The truth is I am the writer after all and some of writing is trusting the reader. Showing and not telling, yada yada yada. I think my incessant “reading over” and modifying is just another way to prevent me from putting myself and my words out there on a medium where they’ll live on their own and be subject to scrutiny. Could I really be afraid of criticism after all this time writing on a blog? Probably, which is entirely embarrassing. Because who cares! But pride and vanity are some powerful little devils, and the only way to move past them is to write on despite the superficial concerns.

I’m going to try harder to work and contribute to this space and not become too serious about the whole shebang. Especially to the point where it stifles things. It’s pretty silly getting so analytical about it, because it’s really just not that important. I care deeply about it, but when I zoom out and consider everything, this is just a ledger of one persons life. And pretty unexciting life, at that. I think my concern lies in whether or not I’m contributing meaningful things that will move me and others forward or if I’m just whining on a stick. I am hoping by the end, what and whenever that is, this will all will reveal something larger and more dimensional than a woman child’s diary about sick days and her dog. But even if it is that. Who cares? I only need to focus on what’s in front of me and stop pausing to consider a future I don’t have control of.  The one thing I don’t want to do is restrain myself or my words or the creative endeavors I want to pursue all because I’m worrying what it will all “look like” in the end. Concerns like those are what kills momentum, and good ideas, before they even get a chance to materialize. My truer goal should be simply to write and to allow the words to do what they’ve always done–help me to see things that my thinking mind can’t.

So, hopefully you’ll be hearing a lot more from me and I from you. I am feeling happy to be one year older, to know myself even better having lived on earth for three hundred and sixty-five more days as ME, Mary Gelpi. I’m becoming pretty good friends with myself and we’re getting along well. We’re practically finishing each others SENTENCES. Thank you Nick for exploring the ocean with me, and tugging me back to shore when I was too tired to swim back myself. What else are big brothers for?

Health, Happiness, Thirty One.

16 thoughts on “Under Water.

  1. I completely understand how you feel. I always plan to be down and out after a big event or vacation. Flare ups and crashes are the worst!!! I also know that trying to stay as positive as you can helps too. Unfortunately some days are better than others… I look forward to following your blog. I think we have a lot in common. Gentle hugs to you!

    Liked by 1 person

  2. Well I’m super glad to hear that you get better at the whole “borrowing time” thing because I completely suck at it. Also- Baby turtle is the cutest thing ever. Did you name it? I couldn’t help but to name it. I would have no choice.
    And I am totally dreading my thirties, since my twenties have sucked so much. :P


      1. Well, I’m glad to hear it. And it’s nice to be able to read blogs like yours and no I’m not alone. If you ever feel like checking it out, I’d love your input on my blog. Asweetpeach.com. It’s a food log, but I talk a lot about being sick. Thank you for your time!

        Liked by 1 person

  3. Amazing! Sounds like you had a good time. I love being under water. Everything sounds so peaceful and quiet, such a soothing feeling. Hope you had a good birthday as well. Love the turtle, it’s so cute.
    Do you mind checking out my blog maybe? Just did my first post now and I’m not sure if I’ve quite nailed it but I tried. Please follow my blog, I can assure you there is better to come!

    Liked by 1 person

    1. Hey Gap.. Checked out your blog and its a great start. I like when you say “You are always becoming, you never arrive.” My only advice would be to think about a focus or theme you’d like to run through each different post and let that guide your words, so that each one has its own unique topic. Also, if you’re writing a post where you’re giving advice about life or anything, like the “becoming” one, I would include more personal experience within the work.. Like “I learned the importance of letting go early on when…” Or “I used to be extremely self conscious and could never consider myself beautiful, but then I started to learn the importance of blah blah blah..” Does that make sense? This gives more meaning/power to your words, and the reader trusts you more because you are speaking from experience and not just spewing what you think is the truth. I think you’ve begun to do that but should do more! But it seems like you’ve got some great things to say and worthwhile experience under your belt to share, so keep going! Thanks for stopping by, keep it up. ;)

      Liked by 1 person

  4. Hi Mary, as the “grandmother” of Fibro sufferers (does 44 years of Fibro top the list?), I love reading your blog. I am heartbroken at your suffering and the suffering of all you young folks. At least they now have a name for it, etc. Back in the “Dark Ages”, my doctors gave me countless diagnosi (is that a word?) and when nothing helped, I got the “it’s must be all in your head…get out more…exercise….see a therapist”.
    It’s funny that deep inside we all “know” when something is physical and not “in our heads”. I stopped going to doctors and just dealt with it best I could. I worked a full-time job as a child care aide in a 60 kid center, bartended four nights a week until 2am and took a night class or two at the college AND became a single mom. All the while suffering with random pains and sleep disorder.
    Fast forward to age 60…pain is just another part of me as is my height, weight, etc.
    Now my issues are insomnia and chronic fatigue so I miss most of my life’s events. Just this week I missed two funerals that I should have been at, a baby shower for a dear friend’s daughter, a birthday party for this same friend’s grandbabies. I did, however, make it to a birthday dinner at a restuarant with my husband which shocked everyone there since they are so used to me not showing up. I cried earlier in the day at how worthless I felt and tried to explain to my husband my Hershey Bar Theory (my adaptation of the Spoon Theory) and I only had two pieces of the bar (energy) to make it thru the whole day and night and I really wanted to go out with him since it had been forever since we had gone to dinner anywhere but to do that I had to miss a funeral and the shower and that I felt like such a loser for not having the energy to do it all. He was very understanding but……he is super social and misses me not being with him.
    I think GUILT needs to be added to the list of symptoms of Fibro as all of us must deal with it as we have to say no to so many things.
    I wish someone in Hollywood would make a movie of a woman with Fibro and how her life goes from active and exciting to lonely and painful and guiltridden and misunderstood. And keep it real….no happy ending….no “magic, one-size-fits-all cure”. Let the world see that Fibro is a real disease, as real as cancer and those of us who have it, SUFFER 24/7 with it and it’s symptoms. And how we lose friends and loved ones and jobs and can’t commit to anything and how our families suffer along with us and how sometimes our spouses just can’t take it anymore and walk out.

    All in my head….I think not and you are damn lucky I don’t have the energy to punch you in your stupid face.

    So Mary, keep writing. Keep entertaining and informing us. We care about you. You care about us. We need each other. We understand each other.

    You all are my tribe and I am so grateful for you.


  5. Happy birthday! It sounds like a wonderful celebration of the life you’ve been given and a healing time as well. I sure understand that “invisible line.” My hubby Dave says I’m good for one place or maybe two when we go out and then I need to go home. :) I love the little turtle by the way. So cute!

    Liked by 1 person

    1. Hey thanks Susan! Two outta three ain’t bad. It wouldn’t impress most people but they just don’t know. I’m happy to hear you have a partner who seems to at least partially get it and sounds supportive of you. So important! Hang tough,

      Liked by 1 person

  6. I’m so glad to hear that your your body let you really enjoy your birthday! It sounds wonderful :) I love water too, be it swimming or just a bath, or even just sitting under the shower, it is relaxing and helps me feel less yucky when I am sick.

    I also love the way you describe our energy budgeting, so true! I haven’t been budgeting all that well lately and unfortunately it is catching up with me :( I agreed to work more hours than I should because we are a bit short staffed at the moment (and my boss still doesn’t know about my CFS, and I’m hoping things get back on track soon or I’m going to have to find a way to bring it up. I had to say no this morning when she tried to call me in because I was feeling too sick and she commented on the fact that I am sick a lot, which worries me because I know people don’t like staff who are always sick) And then I also accepted a few social invites (because I don’t usually get a lot of them so I try to go to most) which all ended up in the same time frame. So now I am laying in bed feeling sick, hoping to get enough rest to not have to call in sick tomorrow, and hoping she doesn’t want me to work any extra days later in the week. Ah the fun of us fools who are still pretending to be well at work!

    Anyway, thankyou for being someone who understands and who helps put what so many of us feel into words :) I always look forward to the latest instalment👍

    Liked by 1 person

    1. Hey Kimberly! Boy do I I know exactly the position you’re in at work.. Here’s the thing though. You should go ahead and tell your boss, otherwise you’re just someone who “calls in sick” a lot, and historically those people are one thing: fakers! Which may explain the comment your boss made. I know your hesitation, that she would never understand or even BELIEVE in this illness, and you might be right, but you might as well tell the truth and not be believed than lie and not be believed. Know what I mean? She probably won’t get it, but at least she’ll know and it sounds like you’re an important part of the company whatever it is, and they need you. In that case they should at least try to understand, or be supportive if they don’t supportive. I get your dilemma, I didn’t tell work for a long time, but it never did me any good. Keep your chin up, I’m impressed you’re still working at all. Just don’t kill yourself over it. Hang in there. Peace!

      Liked by 1 person

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