“I don’t like your body language. You’re not yourself,” was the first thing my doctor said as he entered the room. I was slumped in my chair, and I didn’t need a mirror to know I was pale and my eyes were ringed with dark circles. I did not jump up to greet him like I normally do, and I did not talk quickly or with animation like I normally do. Also, I did not contradict him; I didn’t like my body language, either.
(Apparently, this is what six months of virtually continuous infections will do to a patient’s posture.)
“What’s on your mind? You’re not yourself,” my husband said to me one night as I closed my laptop and stared listlessly at the television, trying to ignore the clutter of the “sick camp” that had taken over our living room: nebulizer and pill bottles fighting for space with stacks of research books, student papers, and half-empty mugs of tea. I was tired of typing while lying down.
(Apparently, this is what six months of virtually continuous infections will do to the coffee table.)
“Are you sure you’re alright today? You’re just not yourself,” my mother said to me in a quiet corner of an otherwise crowded baby shower. She delicately inquired if I was wearing any blush (hint: you need some) and pointed towards the table where I could sit. As I made my way across the room, more than one surprised person said to me: “Oh wow, you’re here. You never make it to showers or events.”
(Apparently, this is what six months of virtually continuous infections will do to my ability to be reliable.)
I do not have direct confirmation from the students I fear I have been short with, the clients and many others still waiting for responses from me somewhere out there in cyberspace, or the friends whose calls I’ve missed or plans I’ve cancelled, but I’m willing to bet they’d agree with this assessment that I am not myself.
Not to get all meta on you, but even here on this blog I feel as though my voice has been slightly off; more cursory and more willing to point you to other places for interesting material rather than being a destination for the discussion itself.
Now, as a general rule I find the term “not myself” a bit vague and useless—how can I be anything other than myself? But the point is well taken; I am not acting as I normally do (or talking, sitting, thinking, and basically getting through the day as I normally do.) I admit it.
For one, I am fragmented. This is something I hear from so many people right now, and I’ve noticed it on several blogs the past few weeks—people taking a break from blogging, or taking a break from commenting and reading, or disconnecting from everything for a bit because there is too much going on. Seems like so many people are taking on more projects and extra work with less time and energy to do it all.
In my world, the freelance deadlines, the huge research project, the class prep and essay grading, the student e-mails (and phone calls!) late at night and early in the morning, the presentations and speaking engagements, and the many other things constantly piling up equal working seven days a week. But I know that while the work details themselves may be different for others, the end result is the same: we’re all being pulled in several different directions.
Usually, though, I thrive on this kind of juggling. This is how it’s always been, and I’ve always thought of it as multi-tasking, not being fragmented.
So what’s different? I just haven’t had the energy to fully engage in most of the things I need to do. “It takes so much energy to simply get through the day and get home that there’s nothing left for anything else,” I told my husband.
I’ve been blaming it all on the long winter here in Boston, sort of joking when I do. But it’s the truth—no winter is ever good for me, but the months from September through right now have been an unusually bad few months. Nothing exotic or hugely interesting, which is why I’ve been hesitant to write about it much, just one infection after another after another after another. Ad infinitum, it seems. In almost seven months, I’ve gone a whopping nine days between infections.
(I’m tempted to say I have the immune system of a gnat right now, but knowing little about gnats, I’m worried that may not be as helpful an analogy as I’d hoped.)
Again, none of this is unexpected in people like me; for whatever reason, this year has just been more virulent. (Ha! Pun somewhat intended). And it took me several months to see for myself how much of my energy was diverted away from other things in my life and consumed by fighting off infections.
So maybe it’s not that I’m fragmented so much as I am currently doing too many things for the altered supply of stamina I have.
Or am I splitting hairs here?
Anyway, I think things are turning around (ignoring the 30-degree weather today, of course). I’m starting to feel better, and my doctor and I have an official plan to try and get me through the next few months. Oh, how I do love me a good plan. I am encouraged by this, and I am confident I can get past the nine-day mark soon. I am not as stressed by the pile of things to do because I’m actually able to chip away it.
And winter? It’s officially over. Now I just need the lungs to get the memo, and we’re all good.
I’m back.
(Apparently, this is what two virtually continuous days of feeling okay will do for a soul.)
Thanks for waiting.
I appreciate this post, quite a bit. Not only does it bring fragmentation out in the open, but there is a cleansing to it. Focusing on the assurances. Spring is here. I can do this.
I never much liked the statement “you’re not yourself”.. In what way am I not myself right now? And too often, in times of such statements, I was feeling most honestly myself. And I was left feeling like it wasn’t okay to *actually* be myself, even if myself was in pain, in a bad attitude, or a little loopy.
Since my diagnosis of FMS, I really don’t like those kinds of statements, and try to steer clear of conversations that may include such things! In all the things I have to deal with, health-wise, and all the things I wish to accomplish, I don’t have the mental, physical, or emotional energy to worry about being anything *but* my honest, true-to-the-moment self. I am as much “myself” as this moment can afford, and I’m not going to over-spend, just to save face. Save face – lose self.
Surrounding myself with people who understand that is helpful. But so is maintaining a (honestly) positive(ish) outlook.
Hi laurie. Glad to hear you’re on your way back. Betsy and I thought of you this weekend. I wish i was closer. I’m glad you were able to post b/c I like being caught up with you. I hope you get all of the rest you need over the next few weeks and that spring treats you VERY well 🙂
Katie, I totally agree with you re: “not yourself.” It’s never worth it to try to appear a certain way for a certain set of expectations.
Audj, thanks for the note! I thought of you guys this weekend–looked like a great time. By the time you come back, things will be even better. I’ll even be, you know, social 🙂
Laurie,
I totally get where you’re coming from here. My last post was basically just one to let everyone know I was still breathing, but my usual gusto just wasn’t there, either. It’s interesting that you note that you’ve noticed this in people other than yourself, as well. Maybe it just is the fact that we are all over-commited.
Leslie
Yep, balance is a hard thing to find these days. Sending healing and happy vibes your way.
I love a good plan, too. Fingers crossed that nine days free becomes a thing of the past. I am more than happy to join you in sick camp this weekend when I’m back in town– the description was eerily similar to what back camp’s been looking like…..
Laurie:
As a former well spouse, and now a serial well spouse, I am quite familiar with the fact of life that my partner, most days, barely has the energy to get through the working day (if she’s able to work) — and consequently needs to veg out the rest of the day.
So I don’t really think of her as “not being herself.” It just is what it is. My new wife, who has mild fibromyalgia and aftermath cognitive effects of a stroke, is one who is driven to set herself so many tasks and projects that they would be impossible for a totally healthy person to achieve; let alone her, with her limited energy. I know this, so every time I hear a pronouncement of “I’m going to do a,b,c and x,y,z today,” I mentally tell myself — yes, and pigs will fly, too!
To keep his perspective and emotional balance, the spousal caregiver has to make these mental adjustments, and plan joint activities with spouse accordingly.
So the moral is, from my point of view, yes you really are yourself all the time, but on good days you are even more yourself! I certainly feel that’s true for myself, anyway, as I am inclined to make too many plans, and stay up too late trying to do things sometimes. — Richard A. http://wellspouse.org
Welcome back!
Hi sweetheart – I know you must not be feeling well cause I havent even talked to you! What shower were you at? Meah said you were not at Michelles?
I do hope that you are feeling better – I would love to see you sometime soon!
Lots of Love!
Thanks for the feedback and concern/commiseration, everyone. Spending weeks at a time not able to leave the house may be what the body demands at times, but it’s not what’s good for the spirit, so things are looking up with each inch closer to more normal activities.
(Mel–it was the shower I saw you at in Feb 🙂
Hi Laurie,
I totally understand the feeling of bbeing fragmented, i am having to make big changes in my life to handle the effects my illness has had on me and my academic abilities. It is not easy to make those decisions, but I definitely agree that having a plan helps a lot.
And it touches me even more that you spent the time and energy to be so kind to me when I contacted you. And before I forget, you have permission to use anything you like from my blog, as long as you link back which I know you do, so I am not worried.
Please keep blogging, even if you can’t write as much, or what you write doesn’t seem exciting or positive to you, we all want to hear about what’s going on in your life. Welove your writing and speaking from myself, I learn so much. I’m glad you blogged honestly about how hard things have been. If I can ever help, maybe message through Twitter or another messenger, or be a sounding board on email, please let me know.
Take care,
Nickie C
Hey – I’m fairly new to this struggle with chronic illness, and this post resonated deeply with me. I’ve felt like you do many times – but until this year, I didn’t know why I felt so fragmented. I just knew I was exhausted all the time, and I couldn’t put a thought together, and that I was terrified about it. Knowledge is power, for me, knowing that it is my immune system screwing me up is at least a bit comforting.
Keep blogging – it’s wonderful. And please come check out my new blog… I’m a celiac with psoriatic arthritis and lymphcytic colitis (and Raynauds of some form). I’m blogging to stay alive.
http://understanding-psa.blogspot.com/
JennyS
Hey Laurie! I’m sorry to hear about the constant infections you’ve been fighting. I hope you’ll get that chance to rest.
I completely relate. Spring is inevitable and I hope it helps.
Good post. Got it through Grand Rounds.
The Cockroach Catcher