This little notebook I had on hand was perfect for writing my daily affirmations!
I’m in a couple groups for Chronic Illness Bloggers, and one of the bloggers, Morgan of the blog Is Was Will Be, put out a call to see if any of us would be willing to road-test a revised self-help course for her.
I’m not sure why exactly I said yes – these days, I try to say “no” more often than “yes” because I just don’t have the capacity anymore. But for some reason, I was drawn to participate in her LOVE YOUR Self Love Challenge for February.
This (very LONG; sorry!) blog post is the result of my participation, which involved taking a daily selfie and posting it to social media (if you wanted to; I chose to, even tho it was scary), and writing a daily affirmation (which I usually chose not to share; for some reason, that was more scary than showing my face 28 times in a row).
Morgan provided a PDF Workbook with insightful journaling prompts, along with weekly messages on the course site (both audio and transcripts, which is what I need due to my sound sensitivity).
This is Morgan’s short description of the course (you can find the long one on her blog):
Having a chronic illness can have a serious impact on your relationship with yourself. Some may teeter along the lines of self-hate. This 4 week challenge is meant to get you thinking about your relationship with yourself and the impact your diagnosis has had on your self-love. Through the use of daily affirmations and journal prompts, you will take baby steps towards loving all of you.
“To participate as part of the collective, the challenge is scheduled for February, May, August, and November. However, you can complete the challenge on your own at any time. Best of all it’s FREE!“
If you are interested in taking the course, you can sign up at the Living Ill Collective academy. Morgan assures me that it will always be free!
I know it may appear that I am full of love for myownself, but that is not truly the case. I am often unhappy with my appearance, since I live in PJs and my body and abilities have changed due to my illnesses; and I’ve lost my identity, since becoming a Sick Person has stolen so much from me. I’ve had to rebuild who I am, and rebuild loving – or at least, not hating – my body and how I look and what I can do.
Sometime during the first few days of February, one of my Facebook writer friends, Michele Borna-Stier, posted the following, which she called “a panic attack that I brought myself out of by writing”:
“I am my worst saboteur; sometimes I think it comes down to trying so hard that I fly high and crash harder than the Wright Brothers’ first plane. Lately, I find myself daily shuffling between extreme body love and extreme body hate. And when I (try to) think objectively on it, I realize just how sad that is. How can I be the first to love on everyone else, and the last to love on me?
“Why am I the way I am? Is it because I emote as heavily as I weigh? Does it even matter. Maybe, maybe not. Does that stupid number matter in who I am? I’m mostly sure the answer is no, so why does matter to me when it comes to everything else?
“Why do I hate that woman in the mirror, what did she do to deserve my hatred? In all honesty, I don’t know the answer to that question. I know I never want anyone else to feel like this, it sucks, and I want to give love to everyone who does feel this way, because I know I’m not alone in the feeling… And that’s heartbreaking to me.”
Obviously, she expressed that at a perfect time, considering the purpose of the challenge. It made me think some more about how I view myself, and why, and this is what I responded:
“We were taught to hate our bodies by society, by the media, by our peers. We’re too skinny or too fat and too short or too tall and our hairstyle is too boring or too flashy and we wear too much makeup or not enough. I hope you can learn to love the body you see. I hope I do the same with mine.”
Around the same time, another of my Chronic Illness Blogger pals, Rhiann Johns, published a post on her blog, Brain Lesion and Me, called “Loving Yourself Isn’t Easy When Chronically Ill“. It ain’t. As she wrote:
It is easy to love yourself when things are going well, and the road ahead lies ample opportunities. The future looks bright and promising, and one which you cannot wait to explore. But all these carefully mapped-out-plans suddenly become rewritten by our bodies. The body that we thought we knew implicitly suddenly becomes something we no longer recognise. Our body is no longer a source of comfort and familiarity, but instead is now a strange, unfamiliar vessel that we loathe. It becomes a prison, holding us captive. A sentence which we are unable to escape, and which we must endure.”
Amen, sister.
Below, I’ve gathered all of the selfies and content I posted for The LOVE YOUR 28 Day Challenge. I hope you enjoy my A Month In the Life.
dSavannah note: I may have edited content for clarity, or added info that I might not have included in the original post, but for the most part, each entry below is as I wrote and posted it that day (and I did not re-read these right before I published this post!). All of my photos are clickable to see a larger image.
Also, if you’d like to skip my 28 posts, because you read them all on social media, click here to go directly to my final thoughts.
PS If you see any typos, please let me know. I’m tired, y’all.
Day 1
I’m participating in February’s The Love Yours 28 Day Challenge by Is Was Will Be blog, which means sharing a selfie every day. That’s gonna be tough. I live in PJs. I never wear makeup. My hair is usually in a greasy ponytail. (Not today, because I showered yesterday for a new pain doctor appointment tomorrow.)
But as Morgan, the challenge leader says, “accept you and all your glory!” So here’s today’s selfie.
Day 2
I had an appointment today with a new pain doctor, so I thought today’s selfie should be in the office.
But then I got home, exhausted, and collapsed. I thought it only fair that if I can love myself when I’m dressed and upright, I need to love myself when I’m not. When I’m so fatigued, I can’t get out of bed. When my head is pounding, so I’m not sure that what I’m writing makes sense.
And that means also sharing a photo that isn’t pretty, where I feel vulnerable, where my eyes aren’t focused, where you can see the bags under my eyes and the scars on my forehead. A photo that makes me want to cry – a reminder of all I’ve lost due to my illnesses.
Day 3
Imagine a day when you’ve climbed a mountain, or ran a marathon, or worked so hard you can’t wait to get home and just fall in bed. Now times it by 10. And that might give you an idea of how exhausted I am from going to the new pain doctor yesterday – what we spoonies call a “crash”.
I’m only just now (4:37pm) getting out of bed (for something other than the potty), and I’m only doing that to write and post this. Otherwise, I probably wouldn’t move.
I spend approximately 65%-70% of my life in bed, so being crashed like this is not new for me. I just don’t usually share pics of myself while it’s happening.
Luckily, my sweet kitty girl Piper decided to come curl up in my arms as I contemplated today’s selfie. I feel like it’s sorta cheating to hide part of my face like this, but: a loving kitty is also part of my reality.
Day 4
Every night, my dear husband makes us dinner (since I can’t cook anymore), then we sit on the couch and watch Netflix together and talk about our day until it’s time for bed.
Usually, Piper curls up on my lap, as she’s doing here, Cricket the kitty sits on his, while Mags (the dog) snores on the other couch.
Technically, the photo with my face isn’t a selfie – my arms aren’t long enough, so hubs took it for me!, but it’s the shot I wanted to get. And yes, this is the same outfit (PJs) I was wearing in the Day 1 photo.
I’m so grateful for the variety of programming on Netflix – it allows us to do something as a couple, when there isn’t much left we can do together, and it’s a good distraction when I’m in pain.
Day 5
Another crash day in bed, another day of nursing from my kitty Piper. In this case, she’s bathing me. (I haven’t showered since last Sunday; it just takes too much energy – energy that I need to just get thru the day, plus the extra needed for this challenge. After all, tis me: I can’t ~just~ post a selfie. I have to write context.)
I went to sleep feeling very uncomfortable with this challenge, and I figured out why – I’ve only posted four selfies on my socials in the last six months! (New glasses, on 11/25; the flower crown I won from Lilybirds, 9/9; our wedding anniversary, 8/8; and my 49th birthday on 7/11.)
Maybe I am not “loving myself properly”, as Morgan, our challenge leader, suggested in the course. I don’t like how I look these days, and getting compliments embarrasses me. There’s a whole lot of other feels around this topic.
And there’s that unwritten rule that Sick People should be hidden and quiet. Plus, other than doctors, I don’t go anywhere or do anything. I’m always in my house, and it’s tiny, with limited spaces for selfies – if I can even get out of bed to take one!
Day 6
I woke up this morning feeling “ok” for me – my nightly dream was actually pretty interesting and might make a good story (as opposed to my usual non-sensical nightmares); pain level is low; I could get out of bed like a non-sick person, instead of waiting for energy & strength; and my brain is working (relatively). However, it’s important I stay well within what’s known as my “energy envelope” (or how much energy I have for the day), because otherwise, I will crash again. So I will start my day by posting this selfie.)
As I’ve stated elsewhere, I feel like my world has gotten very small. And we live in a tiny house (a mere 1,296 sq. ft!). But last night, when I re-read my words that my house has “limited spaces for selfies”, I realized that’s not strictly true.
Before I got sick, hubs and I went on many an adventure. I was an #artist, and I collected art created by others. And – our angled hallway is lined with some of those pieces!
I’m standing next to a #watercolor print by Steve Hanks that hubs acquired long before we got together, but she looks like me! – the girl is wearing a long blue skirt exactly like one I used to own, and she’s petting her orange cat, who looks just like my kitty Lucas (RIP).
The top row of #paintings are by: my daughter-from-another-mother, Kaitlyn; me (acrylic, 2004); my sister-in-law, Karin; hubs; Karin; and #photo by Kaitlyn.
I got the big square painting with the #mandala at one of my very first art shows, at the Winder (GA) arts center, in Nov 2003; it’s by an artist named Sarah Evans (no, not the Welsh one).
Next to that, the second row is an oil painting I purchased from the artist Lynn Magnuson Lunde in her studio in Eureka Springs, Ark (a really cool town!!!) in 2009; and the next two are by me (acrylics, 2004, 2010).
The bottom row is by me (acrylic, 2005); the winning photograph by Natalie Flores from a high school photography competition I judged in 2010; and a really cool series of tiny tiny city-scape paintings by Ikeda Lowe from Savannah (GA), which again, I purchased from the artist in her studio in 2003.
(Note: I tried to find socials for these artists, but couldn’t. And how do I know these names and dates? I have a spreadsheet, of course!)
Day 7
Today, after many many many grey days, we actually have sunshine! Since I had the energy and the sun was in the right place for it, I went into our backyard and sat on our little bench to take my photo.
I’m making that face for three reasons: 1) there may be sun, but it’s still very cold!; 2) it’s also very bright!; and 3) the next-door neighbor is running some very noisy lawn equipment, and my noise sensitivity is high, so it gives me physical pain. (It’s so loud, hubs asked “Are they trying to saw a ship in half?!”)
Everything (except the leland cypress trees on the right) is brown and dry. I’m looking forward to spring, when things start blooming. But I’m grateful we have a fenced back yard, no matter how small, so the dog can do her thing, especially since I can’t walk her anymore.
Day 8
I can’t believe I’ve posted a selfie every day for a week. In the past, I’ve written freely both here and on my blog about my feelings and how my illnesses affect me, but I haven’t really shown my physical form. I have accepted the limitations I now have to live under, but have I accepted the way I look?
This challenge is making me confront that question.
And… I’m not sure.
Today, I feel worse than I have all month. I’m in a lot of overall pain, and I just feel … bleh. My brain feels like sludge.
I thought for today’s selfie I might capture my expression when I have a pain spasm, but it’s just too awful-looking to share. I deleted it immediately.
So, instead, another one of me in bed. Same PJs. Same pillow. Hair getting increasingly dirtier and messier. (But the astute viewer might notice I’m wearing my ‘slightly larger glasses’ – my prescription reading glasses, as opposed to the progressives I’ve worn in other pics.)
Day 9
I woke up feeling a little worse than yesterday: beyond fatigued, unable to get out of bed for a few hours, then barely being able to move when I finally did. And a stuttering brain. (Brain smog, I like to call it.)
Then an unplanned, emotional phone / video call drained the rest of the few spoons I had, leaving me feeling even more flattened than a usual crash.
I had no idea what to do for today’s selfie, so a few minutes ago, I sat on the bedroom floor, leaned against the wall, and took this. It’s so hard to describe what this illness does, but you can probably see the progression when you look at this series.
I like this photo’s moodiness. And it’s a perfect representation of my life: I live a lot of my life in darkness, but I hope for light.
Day 10
Day whatever of this crash. It always gets worse before it gets better, as my mom used to say. I was in bed all day, tho my sleep was broken up by pain and bad dreams.
Everything hurts. Everything is difficult and painful: moving, the weight of the blanket, light, sounds. (Hence the eye mask and the noise-cancelling headphones.) Writing this is like trying to pull my brain thru my nose (tho that actually might be easier).
Day 11
I am totally cheating with this selfie, but I just can’t bear to show a close-up of my face today. I’m still in a crash, and I feel actively grimy, but I don’t have the energy to wash my hair. (Thank goodness for deodorant wipes!)
This is my view from bed: my blankets (which I straightened for this photo; thanks, OCD), the footboard, a closet door, a tall dresser, and the mirror in which the wall and blinds behind me are reflected, as is my face. (Like I said, we have a tiny house: just enough room between the footboard and dresser to walk.)
As sad as my situation is right now, I’ve been far sicker. There have been times I’ve been paralyzed and hubs has had to carry me to the bathroom. Times I haven’t been able to deal with any sound or light or movement at all, not even the low light in this photo. Times when the moment I woke up, I would begin sobbing from my consciousness being thrust back into a pain-wracked body.
And I’m not even a “severe” patient with ME – there are people, like Whitney Dafoe, who live in perpetual darkness and silence and cannot feed or bathe themselves. At all. Ever.
MEcfs may not kill you, but it’s definitely a living death.
Day 12
The hardest part of this illness is not the pain, not the fatigue, and not the isolation. It’s the lack of control. It doesn’t matter that the only things I’ve done the past few days (other than writing & posting a few sentences and a selfie) are the bare necessities required by my body – I’m still crashed. I have no idea when I’ll recover. I have no idea IF I’ll recover (tho historically, I always have, tho ~never~ to pre-MEcfs levels).
It’s hard to love myself when I inhabit a body that keeps me from doing the basics, let alone my passions. It’s hard to love myself when it’s so easy to blame myself for being this ill.
And then my dog, Maggie, who doesn’t mind that I can’t take her walkies anymore, who loves me unconditionally, who doesn’t care if my hair is gross and I’ve been wearing the same hoodie for well over a week, gets in bed, crawls on me, and cuddles up. (She is a good cuddler; but not usually where I can easily take a selfie of us both.)
Day 13
Today I woke up feeling halfway human. If you say “that’s great!”, I would have to agree.
BUT. And it’s a big BUT – I have had to be very very careful not to do too much, to give myself lots of downtime, and to stay within my “energy envelope” – the amount of energy I have to spend on any given day. And it’s impossible to know how big or how small my energy envelope is. I just have to guess, and make sure I STOP REST PACE (as #MEAction recommends). It’s hard to get much done when you keep interrupting yourself!
But I’m finding it easier to love myself today: the light in my green eyes, the way I’m staying within my limitations with regular breaks, even my dirty hair.
I did a couple small chores (dealing with kitty litter and fur bunnies), and I was back to being completely exhausted.
I rested, exerted.
I rested, then spent a few moments at my desk, tho I kept getting confused as to what I was looking for, what I was trying to do, and what folder or app I needed to use.
I rested some more, and decided I should snap today’s selfie and do a few more tiny tasks. As you can see, my supervisor Piper did a perfect photobomb!
And now it’s time to be done for the evening, with hope that tomorrow is even better.
Day 14
Well, one step forward, three steps back. (I could swear that’s a song lyric from my youth, but I can’t seem to find it.) (I was reminded in comments on Facebook that I was thinking of Paula Abdul’s song “Opposites Attract“, which was released November 28, 1989. Can’t believe I forgot that wacky video!)
Today is rainy and grey, and although I don’t feel as bad as I did two days ago, I don’t feel as good as yesterday. My head is hurting, my eyes are burning, and my brain doesn’t want to function.
And, when I went to change my socks, I tried to put my arthritis compression gloves on my feet. (They aren’t even the same color!)
But, I’m not going to get mad about my state of being, or try to force myself to work on the disaster that is my desk, no matter how much I want and need to. I’m gonna laugh at the silliness of my confusion over a glove partially on my foot, and I’m gonna obey my varmints and rest: Maggie (the dog) jumped on the bed and stood over me, and as soon as she moved, Piper (the cat) took her place.
Day 15
We’ve had thunder, lightning, and lots of rain here. And since I’m lucky enough to be a barometer (aka: it makes me feel waaaay worse! and my pain and fatigue are both really bad again), it’s been a do-nothing and stay-in-bed day.
Except for letting the dog out, which is when I had the idea for this shot. I like its moodiness.
Day 16
Today I couldn’t stand myself anymore, so I took a shower and washed my hair. That took every bit of energy I had, so I didn’t get anything at all done on my very long To Do List. (Much of it involves admin work around my illnesses, but I also need to do some maintenance on my blog.)
That’s one of the million and one impossible choices you have to make when you have this illness: do you have clean hair or a clean desk? Today I chose clean hair, tho my anxiety keeps pointing out the piles of paper I need to handle. (Tomorrow, anxiety!!!)
It’s totally unfair that doing something most people do every day is so punishing to someone with chronic illness.
I also had the hardest time picking a selfie I liked. Weird, right? I’m clean and look conventionally presentable for once, but little things in each pic I took made me twitch. The mirror was dirty. My (not grey or black!) top didn’t look right partially unzipped, and strangled me when it was fully zipped. The mirror reflected all the detritus in my bathroom. The angle made my hands look gigantic.
I finally settled on this one, because I like the lines of the doorframe and mirror, and it let me see the back of my head.
Day 17
It’s sunny today!!! So in between calling doctors about test results (or more accurately: listening to hold music) and staring at the paper on my desk (but not doing much with it), I popped outside (too cold to stay out long), sat on one of our comfy patio chairs, and snapped this picture. I couldn’t even see what I was capturing until I got inside, so I’m trés amused at my halo.
In case you’re wondering, the reason my (not black or grey!) hoodie looks so bulky is because I’m wearing my scoliosis [affiliate link] and lumbar braces under it, which I have to do when I’m at the computer. They aren’t terribly comfortable, but I need the support and the little bit of pain reduction they give me.
Day 18
Today the rain and grey and sucky weather is back, which makes my head hurt and my aches more pronounced. And because I did a few things yesterday, I woke up to the extra aggravation of my shoulders and neck burning. As usual, I laid in bed for about an hour before I could get up and potty. Then I had to lay down again before I could get my meds. Then rest again before I could do anything else.
I tried to do a little work at my desk earlier, tho it mostly involved me staring blankly at my 9-year-old laptop screen, as I’m doing in this shot I managed to snap on my first try. (Go me!)
I know what needs to be done, but the little steps to make it happen seem beyond my brain’s ability to grasp. I’m motivated: I want nothing more than to complete and check off each task on my To Do List, but I can’t. No amount of motivation will make my synapses fire correctly. A short convo with hubs about bills, and I’m back in bed, whimpering, because cognitive exertion is just as bad for me as physical exertion.
In response to yesterday’s photo, one of my friends wrote: “You look great! It’s amazing… I would never guess that you are so sick.” That’s one of the many things that is so hard about my illnesses – they are invisible.
My nerve pain doesn’t show up on my skin as lines. My head doesn’t look as misshapen and throbbing as it feels. You can’t see the pain pulsing through my hands and arms, or the fact that my fingers feel like little blocks of ice, even with a space heater.
And it feels like I should say something more, on how I’m feeling about the challenge, but… words fail. As does my ability to sit up straight.
Day 19
Today’s bad headache, burning shoulders, fibro pains, and hip aches were too debilitating to get out of bed, even tho I not only want to, I need to! I have an appointment with my GP on Monday, and I have to finish my prep in the next two days – that means getting all my questions and documents together so we can discuss and deal with them. This causes anxiety and stress – I need to make sure I don’t forget anything!
Yesterday, I could try to do a few things, but today there is no try. There is only rest. (Plus, my faithful nurse Piper says so!)
I look angry in my photo, but I’m not. I’m just in pain and exhausted. And frustrated, again, with the lack of control over my own life. Holding the phone up to capture this image caused spasms of pain to run down my arms and up my neck and through my back.
When I woke, I had a message from Morgan, our challenge leader, who mentioned the affirmation portion of the challenge, where I’m supposed to share one “relating to whatever you’re feeling or experiencing at that moment.” As she said in the course files: “Use your affirmations to speak life and light into your relationship with your appearance.”
I am writing daily affirmations in the little notebook I posted on the first day, but I haven’t been sharing them. I don’t know why I’m ~now~ okay with displaying all these photos of myself, but sharing my affirmations? It feels more private. More scary.
But in the spirit of it, I’ll share one – my affirmation yesterday – “Doing this challenge is a type of self-care: making me focus on myself instead of others.”
Day 20
Today, let’s talk about clothes.
Some disabilities can make you prone to sensory hypersensitivity – and I happen to have two of them: fibromyalgia and Myalgic Encephalomyelitis (MEcfs), tho there are many others. (If google’s top results are to believed, it only bothers children, but that’s not true. I know lots of adult spoonies who have the same issues I do with sound, textures, etc.)
Those of you who knew me before I got Full-Time Sick know my ‘fashion style’ veers mostly into ‘colorful flower child’ territory, tho I can wear professional suits if required.
These days, my style is “what is comfy and I can stand to wear”. My closet is full of clothes and shoes – most of which are over a decade old! – that I can’t bear to get rid of, even if I have no reason and no place to wear them.
Some of my clothes actually HURT me – whether it’s the weight of them, or the texture, or the tightness on my body. It’s a visceral “NO” with many.
I’ve mentioned over the past few days that my shoulders were burning. Turns out it wasn’t just from overuse. It was also the result of the neckline weight of the purple PJ shirt I was wearing. Hubs rubbed some pain cream onto my shoulders, and when that didn’t lessen the anguish at all, it occurred to me it had to be the shirt. And I was right – when I changed into the blue v-neck top I’m wearing in this photo, it made a huge difference. My shoulders still hurt, but it’s not bothersome – just the usual.
Yet another thing my illnesses have stolen – my vanity and the joy I used to get in dressing up. But it’s sort of a blessing: learning to love myself no matter how I look.
Day 21
Normally, on a day like today, I would rest. I should have rested, based on how I felt (even worse now, at night), but I couldn’t. I had to push myself to get things done, because tomorrow I see my GP, and that means I’ll be crashed for the following two or three days.
My doctor’s office is a good hours’ drive away, and it will take the entire day and wear me out. More than 5 minutes in a car, and I’m in agony, so you can imagine how much pain this will cause.
But I had to prep for this appointment (among other things that needed doing) instead of resting. I spent as much time as I could at my desk, and when my brain lagged, I went to the living room, lay on the couch and watched Netflix.
(Which is how I managed to catch a selfie with Cricket, who never really snuggles with me! She was snoozing away, and didn’t move when I sat next to her. Also, her fur is so dark, either we can see her, or my face is blown out with too much light. You know what I look like, so I chose option B, and I’m far too lazy to color correct in photoshop!)
When my brain engaged, I went back to my desk, rested, desk, rested, ad infinitum.
Day 22
I could write a really reallllly long(er) post about what a production it is for me to go see a doctor, enumerating all the items I have to take with me, and why. But I’ll spare us all. At least, this post.
Suffice it to say that it’s a lot, and I have a list I check before I leave for every appointment, just to make sure I don’t forget anything.
I took two selfies today. Left: on the way to the doctor, in the nest of blankets and pillows I made for myself in the back seat of the car, wearing an eye mask & my headphones to decrease the stimuli (tho there’s not much we can do about the bumps in the road). Thank goodness hubs is an excellent driver. (He should be, since he used to teach driver education!)
In case you’re wondering why I would go so far to see a doctor, considering the toll it takes on me: it’s really hard to find an ME-literate doctor who listens, is willing to research, will do the tests I need, and will monitor my health, not to mention takes my insurance. Mine is all of the above, plus very smart and knowledgeable. (This is the third practice I’ve followed him to!)
Also if you’re wondering, this was just a followup and to get some blood drawn. Nothing major or earth-shattering. But it had to be done. I see him every four months or so.
Right selfie: on the way home, my neck was hurting something awful, so I called to see if my chiropractor could fit me in. (It’s actually easier to see two doctors on the same day: I’m already up and dressed!) Luckily, he could, and that’s his feet next to me while I’m on the table. I should see him far more regularly than I do, but often my ability to leave the house doesn’t align with his office hours.
I meant to have hubs take a picture of me with my rollator – cuz I’m a #BabeWithAMobilityAid, and it’s nigh on impossible to take a selfie with it – but I plumb forgot.
Day 23
When I awoke earlier at my bladder’s insistence, nurse Piper could only have been closer to me if she’d been sitting on my head. Cricket cuddled on my feet, and Maggie snored away to my right.
Took me a while, but I finally went back to sleep. Am awake now at my stomach’s insistence, deeply thankful hubs fixed me food to eat, and am hoping to get back to sleep soon.
Like I predicted: total crash day.
(If you’re wondering about my brown pillow: It’s a kid’s travel pillow with a monkey face. The middle, where your neck usually goes, is the perfect place for one side of the headphones, since I sleep in them.)
Day 24
Y’all, I can’t even today. I slept, then woke up (bladder, as usual), and then couldn’t get back to sleep. I tried, so, so hard, employing all my tools, but no go, despite my extreme fatigue.
I was happy to see sunshine, so I managed a few minutes outside. Warmth is good for me. Maggie (the dog) loves it too – you can see her behind my head looking at the street (left photo; the least horrible-looking one of the few I took); and at the back left corner of the right photo, she’s sniffing the grass and plants (well, if you squint, you can see her white legs).
The hallmark – and least fun symptom – of MEcfs is post-exertional malaise (PEM), or “the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.” (quote from Very Well Health) In my case, PEM usually hits me the next day, then lasts, well, as long as it lasts.
Unfortunately, tomorrow I have a procedure scheduled with my new pain doctor, where injections will be shot into my cervical spine in an attempt to help lessen my headaches. The last time I had something similar done (in Nov 2015), things went awry. I’m trying not to be anxious about this procedure – different doctor, and I’ll be knocked out.
Day 25
As I posted earlier, I had the pain procedure this morning, then came home and went to sleep. I felt kinda bad about “wasting” the feeling-no-pain from the sedation, because a) I never EVER have ZERO pain, and b) of course, it all was back the moment I woke up from my nap.
Unfortunately, we won’t know if the procedure was fully successful for a few days. Right now it feels like the rest of my body is trying to make up for the lack of pain where I had the injections (C2-5, right side, shown in the second, bonus photo in comments; note the injection site way up in my hairline) by flaring a bit more. My PEM is low, but I suspect it will be back with a vengeance tomorrow. Especially since my eyeballs just will not focus. I have a followup with the pain doctor in a week.
This time, I had hubs take a picture of me with my rollator – cuz I’m a #BabeWithAMobilityAid! I am embarrassed to say that my #InternalizedAbleism kept me from getting one for far too long (not til Dec 2017). Instead I would just collapse in stores. (Far more embarrassing!!!)
Like other people who use mobility aids, the rollator helps me walk better, supports my weight, lets me be upright longer, gives me a seat if I need it, and can carry my bags to lessen exertion. (For those of you who think you might need a mobility aid, YOU DO. GET IT!)
Of course, I grabbed a selfie before the procedure. Yes, I’m wearing a different mask. I didn’t want to drool all over the one my friend made me. I’m also putting the sexy back into hairnets and paper gowns. (Some of you might notice the raised left eyebrow. For some reason, I felt it was appropriate.)
Affirmation: even tho it’s scary, I am doing things to take care of myself.
Day 26
Another fun aspect of this illness is what we patients call ‘wired-and-tired’. It’s exactly what it sounds like: you are incredibly tired, and want nothing more than to sleep, but you are also utterly wired from the adrenaline dump required to get you through whatever activity you had to do that day. (Or in this case, the past couple of days. PEM is cumulative, y’all.)
And that’s where I am right now, at 1:18am EST on what is technically Friday, the night of my pain procedure. I’m wired-and-tired, so I’m writing this and my closing post. (Gotta write when the muse hits!)
Unfortunately, my insomnia was very very very bad, and I didn’t get to sleep until around 7am this morning. Then I woke up around 9:30pm (fibro pain and bladder). Slept again 11am-1:30pm. Woke up (same reasons). Attempted to sleep some more, but like yesterday, all my tricks and meds and meditations aren’t doing a thing.
So I thought instead of fighting – and failing – for sleep, I’d post today’s selfie.
Across the street from my GP’s office is a Lidl Food Market, which I’ve never been in, so we thought we’d check it out since it was right there. I decided it’s the love child of a small-town grocery store and an Aldi’s. Their selection of gluten-free items was woefully small, so no joy for me… but they did have lovely flower bouquets, which turned out to be 30% off. Result!
When in doubt, get yourself flowers!
So today’s selfie is an attempt at capturing a bit of my bouquet with my face. Oh, and the background painting is one of my early works (2003), part of my “Variable as the Sea” series.
Affirmation: I love my creativity and eye for color.
Day 27
Last night, I slept for 12 hours straight, which NEVER EVER happens. EVER. (Usually, I wake every 2-3 hours. UGH.) That means today I woke up feeling pretty great. Which immediately went away when I decided to work on my blog post for the challenge and this #shelfie. (Bad Sick Person!)
I’d like to talk about something else that my illnesses stole from me: #books and words. Before I got sick, I was a voracious reader, devouring 80-100 books a year. (And of course, tracking them in a spreadsheet, since 03/1994.)
I also reviewed books for Amazon, receiving and reviewing many an ARC (Advanced Readers Copy), discovering authors before anyone knew who they were (Nnedi Okarafor being one of them!). I’d constantly get asked by authors to review their books. (Unfortunately, I kept saying “yes” long after I should have said no.)
And, I was an editor and got to edit quite a few books. Seeing my name in the acknowledgements, thanking me for my editing prowess, is super cool, second only to seeing my name as the author on a book cover.
Then I got sick, and it took away my ability to read books, much less edit. My last editing client (bless him!) was so patient, even though it took me six months or so to edit less than 22,000 words.
The brain fog was so bad, when reading (or editing), I would stare at the pages, and they might as well have been blank. Or written in Vulcan. If I was able to read a little, even five minutes later I would fail to remember what I had read. And forget about plot points or character arcs. Literally. I would forget them.
But slowly, I’ve gotten to where I can read again, even if it’s just one book a month, 10 or 20 pages at a time. But I remember what happened! I remember character names! I am slowly catching up on all the reviews I’ve promised!
Of course, I am a book dragon, so even through the dark days of not being able to read at all, I have continued to collect books, especially to complete my collection of books by my favorite authors (Charles de Lint [getting there] and Terry Pratchett [done!]).
If my illnesses don’t kill me, it’s likely I’ll be buried and smothered under my TBR (to-be-read) pile (the books I am holding, and the ones on the right side of the photo, both the pile next to me and everything on the bookshelf, of which you can only see half!). But what a way to go!
To capture this photo, I had to use my real camera and my remote. I also had to do some editing in photoshop (which I haven’t done on any of the other photos in this challenge) because the colors were way off and the shots weren’t straight.
I’ve added two outtakes – Piper sitting in for me while I set up the camera and did some test shots, which I didn’t even realize till I put the SD card in my computer, and my super-professional photography setup with my 11-year-old Nikon and my fun and useful Joby tripod [affiliate link] (no idea what Piper is doing behind it. Cat things, I guess).
Affirmation: I’m glad I continued to collect books, with hope in my heart that I would one day be able to read again.
Day 28
Wow. It is hard to believe that today is the last day of the challenge. What will y’all do without seeing my face every day?
Of course, because I spent so much energy setting up yesterday’s #shelfie and writing a novella about it, I got that wired-and-tired thing again, so was up far too late, and then woke up, fought for sleep, woke up, etc. Not fun.
And if you haven’t figured it out by now, getting adequate sleep and rest is a VERY important part of managing this illness. I don’t get enough? I suffer. Quite literally. And more than usual.
Thus, I’m quite tired and crashy today, and that means today’s selfie is another one of me in bed. But this time I’ve got both nurse Piper perched on my chest, and nurse Maggie (the dog) next to us.
Affirmation: I am stronger and braver than I think, and love is an inherent part of my whole self – body, mind, and spirit.
Day 29
Just kidding! I’m not really continuing the challenge, tho I think it will be weird to stop sharing selfies every day. Instead, I created this collage of all 28 photos. Thought it was kinda neat to see them all together. And I will use those spoons I had devoted to the challenge to do all the other things I’ve not been doing (like filing medical bills, and working on taxes [such larks!] and writing reviews [bad me!]).
I don’t really know what I expected when I agreed to do this challenge, and I’m still contemplating how I feel about it.
I know I’ve shared a LOT about my life these past 28 days, but there are so many more topics I didn’t discuss during this challenge around having a #ChronicIllness (or three. You can never have just one. They all have to bring their crappy friends along).
The guilt. The shame. The variability. The financial insecurity. The fight to get disability benefits, and then the fear that those benefits might be taken away if you have a good day and post a photo about it (it’s happened to others). Feeling bad about so many things (like your dietary needs), even tho you can’t help it. Having to fight your own body. The many many micro-aggressions you face as a disabled person, and the disbelief from so many, even people close to you, not to mention the medical community, people who are supposed to help you, but often cause great harm instead. Having to visit many many doctors and cobble together a treatment plan, and use your body as a science experiment to do so.
More importantly: I didn’t properly thank my husband for his continuous physical, mental, emotional, and financial support. I literally would NOT have survived getting ill without him, especially when I had to quit my job in December 2014. He drives me to all my doctors appointments, picks up my prescriptions, cooks our meals, gets the groceries, maintains the house and home, cleans up after the varmints, holds me when I cries, does his stupid impressions to make me laugh (some of y’all know what I’m talking about), and basically all the jillion things I cannot. And he appreciates when and what I am able to do. He even puts up with me when I get frustrated and can’t communicate and inadvertently take it out on him. He also cares for his elderly parents and does many things for them that they can no longer do either.
(That’s not to say he’s perfect; he’s only human, and he does things that drive me batty, like leaving clothes in the dryer, and dirty socks on the coffee table, and strewing mail and misc. detritus all over every available surface of the house… Oh, and the snoring. Heaven help me.)
Many, many men (and some women), when faced with a spouse struck down by chronic illness, forget all about the part of the wedding vows that say “in sickness” and don’t stick around, like the husband of one of the patients in the documentary Unrest.
I hate it when people call my husband a “saint” – as if the accepted – and expected! – response is that he should have left me. To him, leaving wasn’t even a thought or a choice.
At some point, unless they drop dead, everyone will become disabled. We need to do away with that crappy notion that disability is a moral failing and that it’s okay and understandable to leave if your partner becomes ill and needs care. It’s NOT OKAY.
However, I will readily call my husband a mensch, because his picture should be in the dictionary next to it.
I also wanted to send a big THANK YOU! to everyone who followed along on this experiment on social media. I appreciated every react and every comment!
My month of February by the numbers: four doctor appointments; eight vials of blood drawn; one IV; at least five shots in my spine; two showers; one outing (not to a doctor’s office); one book finished reading; zero good days; nine productive days; three semi-productive days; two non-productive days (where I wasn’t quite crashed, but couldn’t do anything either); ten crash days; and 28 selfies and posts.
Oh, and my recommendation? Do this challenge. You never know what you’ll learn about yourself, or who you might reach and inspire.
Loving myself, and you,
/ El Fin.
About the Challenge Leader, Morgan:
Morgan is a Chronic Illness + Holistic Wellness Blogger and Content Creator at Is Was Will Be. After being diagnosed with a rare chronic illness, Myasthenia Gravis, Morgan started blogging as a way to work through her struggles of living with a chronic illness.
What started as a hobby has turned into a passion as Morgan continues to blog about all things chronic illness, mental wellness, and life beyond a diagnosis.
Connect with Morgan:
• Blog
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This is the fourth year I am participating in #MEAction‘s #MillionsMissing Advocacy for my disease, Myalgic Encephalomyelitis (MEcfs).
I got this book a loooonnng loooong time ago (back when it was first published, in October 2016): 
My Dear Readers,
Sometime back in ye olden days of March or April, Julie Morgenlender, a member of my Chronic Illness Bloggers group, posted a request for reviewers for her upcoming anthology, 
ulie Morgenlender is a friend, daughter, aunt, crocheter, reader, creator of this anthology, and so much more, despite being unable to work full time.
