{"id":8254,"date":"2021-03-01T16:00:56","date_gmt":"2021-03-01T21:00:56","guid":{"rendered":"https:\/\/dsavannah.com\/blog\/?p=8254"},"modified":"2021-04-24T15:51:41","modified_gmt":"2021-04-24T19:51:41","slug":"the-love-your-28-day-challenge","status":"publish","type":"post","link":"https:\/\/dsavannah.com\/blog\/index.php\/the-love-your-28-day-challenge\/","title":{"rendered":"The LOVE YOUR 28 Day Challenge"},"content":{"rendered":"
\"Cover<\/a>

This little notebook I had on hand was perfect for writing my daily affirmations!<\/p><\/div>\n

I’m in a couple groups for Chronic Illness Bloggers, and one of the bloggers, Morgan of the blog Is Was Will Be<\/a>, put out a call to see if any of us would be willing to road-test a revised self-help course for her.<\/p>\n

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<\/a> for February.<\/p>\n

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).<\/p>\n

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).<\/p>\n

This is Morgan’s short description of the course (you can find the long one on her blog<\/a>):<\/p>\n

\"\"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.<\/em><\/p>\n

“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!<\/b><\/span>“<\/em><\/p>\n

If you are interested in taking the course, you can sign up at the Living Ill Collective academy<\/a><\/b><\/span>. Morgan assures me that it will always be free!<\/p>\n

\n

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.<\/p>\n

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”<\/span>:<\/p>\n

\"\"\u201cI 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?
\n<\/em><\/p>\n

\u201cWhy 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?<\/span> <\/em><\/p>\n

\u201cWhy 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.\u201d<\/em><\/p>\n

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:<\/p>\n

\"\"\u201cWe were taught to hate our bodies by society, by the media, by our peers. We\u2019re 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.\u201d<\/em><\/p>\n

Around the same time, another of my Chronic Illness Blogger pals, Rhiann Johns, published a post on her blog, Brain Lesion and Me<\/a>, called “<\/span>Loving Yourself Isn\u2019t Easy When Chronically Ill<\/a>“. It ain’t. As she wrote:<\/p>\n

\"\"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.”<\/em><\/p>\n

Amen, sister.<\/p>\n

Below, I\u2019ve 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.\u00a0 <\/span><\/p>\n

dSavannah note:<\/b><\/em><\/span> 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.<\/p>\n

Also, if you\u2019d like to skip my 28 posts, because you read them all on social media, click here<\/a> to go directly to my final thoughts.<\/p>\n

PS If you see any typos, please let me know. I’m tired<\/em>, y’all.<\/p>\n

\n

Day 1<\/strong><\/h2>\n

\"Selfie<\/a>I\u2019m participating in February\u2019s The Love Yours 28 Day Challenge by Is Was Will Be blog<\/a>, which means sharing a selfie every day. That\u2019s 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.)<\/p>\n

But as Morgan, the challenge leader says, \u201caccept you and all your glory!\u201d So here\u2019s today\u2019s selfie.<\/p>\n

\n

Day 2<\/strong><\/h2>\n

\"Two<\/a>I had an appointment today with a new pain doctor, so I thought today\u2019s selfie should be in the office.<\/p>\n

But then I got home, exhausted, and collapsed. I thought it only fair that if I can love myself when I\u2019m dressed and upright, I need to love myself when I\u2019m not. When I\u2019m so fatigued, I can\u2019t get out of bed. When my head is pounding, so I\u2019m not sure that what I\u2019m writing makes sense.<\/p>\n

And that means also<\/em> sharing a photo that isn\u2019t pretty, where I feel vulnerable, where my eyes aren\u2019t 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\u2019ve lost due to my illnesses.<\/p>\n

\n

Day 3<\/strong><\/h2>\n

\"Photo<\/a>Imagine a day when you\u2019ve climbed a mountain, or ran a marathon, or worked so hard you can\u2019t wait to get home and just fall in bed. Now times it by 10. And that might<\/em> give you an idea of how exhausted I am from going to the new pain doctor yesterday – what we spoonies call a “crash”.<\/p>\n

I\u2019m only just now (4:37pm) getting out of bed (for something other than the potty), and I\u2019m only doing that to write and post this. Otherwise, I probably wouldn\u2019t move.<\/p>\n

I spend approximately 65%-70% of my life in bed, so being crashed like this is not new for me. I just don\u2019t usually share pics of myself while it\u2019s happening.<\/p>\n

Luckily, my sweet kitty girl Piper decided to come curl up in my arms as I contemplated today\u2019s selfie. I feel like it\u2019s sorta cheating to hide part of my face like this, but: a loving kitty is also part of my reality.<\/p>\n

\n

Day 4<\/strong><\/h2>\n

\"Two<\/a>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\u2019s time for bed.<\/p>\n

Usually, Piper curls up on my lap, as she\u2019s doing here, Cricket the kitty sits on his, while Mags (the dog) snores on the other couch.<\/p>\n

Technically, the photo with my face isn\u2019t a selfie – my arms aren\u2019t long enough, so hubs took it for me!, but it\u2019s the shot I wanted to get. And yes, this is the same outfit (PJs) I was wearing in the Day 1 photo.<\/p>\n

I\u2019m so grateful for the variety of programming on Netflix – it allows us to do something as a couple, when there isn\u2019t much left we can do together, and it\u2019s a good distraction when I\u2019m in pain.<\/p>\n

\n

Day 5<\/strong><\/h2>\n

\"Tabby<\/a>Another crash day in bed, another day of nursing from my kitty Piper. In this case, she\u2019s bathing me. (I haven\u2019t 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\u2019t ~just~ post a selfie. I have to write context.)<\/p>\n

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<\/a>, 9\/9; our wedding anniversary, 8\/8; and my 49th birthday on 7\/11.)<\/p>\n

Maybe I am not<\/em> \u201cloving myself properly\u201d, as Morgan, our challenge leader, suggested in the course. I don\u2019t like how I look these days, and getting compliments embarrasses me. There\u2019s a whole lot of other feels around this topic.<\/p>\n

And there\u2019s that unwritten rule that Sick People should be hidden and quiet. Plus, other than doctors, I don\u2019t go anywhere or do anything. I\u2019m always in my house, and it\u2019s tiny, with limited spaces for selfies – if I can even get out of bed to take one!<\/p>\n

\n

Day 6<\/strong><\/h2>\n

\"Photo<\/a>I woke up this morning feeling \u201cok\u201d 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\u2019s important I stay well within what\u2019s known as my \u201cenergy envelope\u201d (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.)<\/p>\n

As I\u2019ve 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 \u201climited spaces for selfies\u201d, I realized that\u2019s not strictly true.<\/p>\n

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!<\/p>\n

I\u2019m 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\u2019s petting her orange cat, who looks just like my kitty Lucas (RIP).<\/p>\n

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.<\/p>\n

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\u2019s by an artist named Sarah Evans (no, not the Welsh one).<\/p>\n

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).<\/p>\n

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.<\/p>\n

(Note: I tried to find socials for these artists, but couldn\u2019t. And how do I know these names and dates? I have a spreadsheet, of course!)<\/p>\n

\n

Day 7<\/strong><\/h2>\n

\"White<\/a>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.<\/p>\n

I\u2019m making that face for three reasons: 1) there may be sun, but it\u2019s still very cold!; 2) it\u2019s 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\u2019s so loud, hubs asked \u201cAre they trying to saw a ship in half?!\u201d)<\/p>\n

Everything (except the leland cypress trees on the right) is brown and dry. I\u2019m looking forward to spring, when things start blooming. But I\u2019m grateful we have a fenced back yard, no matter how small, so the dog can do her thing, especially since I can\u2019t walk her anymore.<\/p>\n

\n

Day 8<\/strong><\/h2>\n

\"White<\/a>I can\u2019t believe I\u2019ve posted a selfie every day for a week. In the past, I\u2019ve written freely both here and on my blog about my feelings and how my illnesses affect me, but I haven\u2019t really shown my physical form. I have accepted the limitations I now have to live under, but have I accepted the way I look?<\/p>\n

This challenge is making me confront that question.<\/p>\n

And\u2026 I\u2019m not sure.<\/p>\n

Today, I feel worse than I have all month. I\u2019m in a lot of overall pain, and I just feel \u2026 bleh. My brain feels like sludge.<\/p>\n

I thought for today\u2019s selfie I might capture my expression when I have a pain spasm, but it\u2019s just too awful-looking to share. I deleted it immediately.<\/p>\n

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\u2019m wearing my \u2018slightly larger glasses\u2019 – my prescription reading glasses, as opposed to the progressives I\u2019ve worn in other pics.)<\/p>\n

\n

Day 9<\/strong><\/h2>\n

\"Dark-haired,<\/a>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.)<\/p>\n

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.<\/p>\n

I had no idea what to do for today\u2019s selfie, so a few minutes ago, I sat on the bedroom floor, leaned against the wall, and took this. It\u2019s so hard to describe what this illness does, but you can probably see the progression when you look at this series.<\/p>\n

I like this photo\u2019s moodiness. And it\u2019s a perfect representation of my life: I live a lot of my life in darkness, but I hope for light.<\/p>\n

\n

Day 10<\/strong><\/h2>\n

\"Grainy<\/a>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.<\/p>\n

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).<\/p>\n

\n

Day 11<\/strong><\/h2>\n

\"Foreground<\/a>I am totally cheating with this selfie, but I just can\u2019t bear to show a close-up of my face today. I\u2019m still in a crash, and I feel actively grimy, but I don\u2019t have the energy to wash my hair. (Thank goodness for deodorant wipes!)<\/p>\n

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.)<\/p>\n

As sad as my situation is right now, I\u2019ve been far sicker. There have been times I\u2019ve been paralyzed and hubs has had to carry me to the bathroom. Times I haven\u2019t been able to deal with any sound or light or movement at all<\/em>, 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.<\/p>\n

And I\u2019m not even a \u201csevere\u201d patient with ME – there are people, like Whitney Dafoe<\/a>, who live in perpetual darkness and silence and cannot feed or bathe themselves. At all. Ever.<\/p>\n

MEcfs may not kill you, but it\u2019s definitely a living death.<\/p>\n

\n

Day 12<\/strong><\/h2>\n

\"Medium-sized<\/a>The hardest part of this illness is not the pain, not the fatigue, and not the isolation. It\u2019s the lack of control. It doesn\u2019t matter that the only things I\u2019ve done the past few days (other than writing & posting a few sentences and a selfie) are the bare necessities required by my body – I\u2019m still crashed. I have no idea when I\u2019ll recover. I have no idea IF<\/em> I\u2019ll recover (tho historically, I always have, tho ~never~ to pre-MEcfs levels).<\/p>\n

It\u2019s hard to love myself when I inhabit a body that keeps me from doing the basics, let alone my passions. It\u2019s hard to love myself when it\u2019s so easy to blame myself for being this ill.<\/p>\n

And then my dog, Maggie, who doesn\u2019t mind that I can\u2019t take her walkies anymore, who loves me unconditionally, who doesn\u2019t care if my hair is gross and I\u2019ve 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.)<\/p>\n

\n

Day 13<\/strong><\/h2>\n

\"White<\/a>Today I woke up feeling halfway human. If you say \u201cthat\u2019s great!\u201d, I would have to agree.<\/p>\n

BUT. And it\u2019s 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 \u201cenergy envelope\u201d – the amount of energy I have to spend on any given day. And it\u2019s 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<\/a> recommends). It\u2019s hard to get much done when you keep interrupting yourself!<\/p>\n

But I\u2019m finding it easier to love myself today: the light in my green eyes, the way I\u2019m staying within my limitations with regular breaks, even my dirty hair.<\/p>\n

I did a couple small chores (dealing with kitty litter and fur bunnies), and I was back to being completely exhausted.<\/p>\n

I rested, exerted.<\/p>\n

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.<\/p>\n

I rested some more, and decided I should snap today\u2019s selfie and do a few more tiny tasks. As you can see, my supervisor Piper did a perfect photobomb!<\/p>\n

And now it\u2019s time to be done for the evening, with hope that tomorrow is even better.<\/p>\n

\n

Day 14<\/strong><\/h2>\n

\"Two<\/a>Well, one step forward, three steps back. (I could swear that\u2019s a song lyric from my youth, but I can\u2019t seem to find it.) (I was reminded in comments on Facebook that I was thinking of Paula Abdul’s song “Opposites Attract<\/span>“<\/a>, which was released <\/span>November 28, 1989<\/span>. Can’t believe I forgot that wacky video!)<\/p>\n

Today is rainy and grey, and although I don\u2019t feel as bad as I did two days ago, I don\u2019t feel as good as yesterday. My head is hurting, my eyes are burning, and my brain doesn\u2019t want to function.<\/p>\n

And, when I went to change my socks, I tried to put my arthritis compression gloves on my feet<\/em>. (They aren\u2019t even the same color!)<\/p>\n

But, I\u2019m 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\u2019m gonna laugh at the silliness of my confusion over a glove partially on my foot, and I\u2019m 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.<\/p>\n

\n

Day 15<\/strong><\/h2>\n

\"Black<\/a>We\u2019ve had thunder, lightning, and lots of rain here. And since I\u2019m lucky enough to be a barometer (aka: it makes me feel waaaay worse! and my pain and fatigue are both really bad again), it\u2019s been a do-nothing and stay-in-bed day.<\/p>\n

Except for letting the dog out, which is when I had the idea for this shot. I like its moodiness.<\/p>\n

\n

Day 16<\/strong><\/h2>\n

\"Close-up<\/a>Today I couldn\u2019t stand myself anymore, so I took a shower and washed my hair. That took every bit of energy I had, so I didn\u2019t 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.)<\/p>\n

That\u2019s 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!!!)<\/p>\n

It\u2019s totally unfair that doing something most people do every day is so punishing to someone with chronic illness.<\/p>\n

I also had the hardest time picking a selfie I liked. Weird, right? I\u2019m 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\u2019t 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.<\/p>\n

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.<\/p>\n

\n

Day 17<\/strong><\/h2>\n

\"White<\/a>It\u2019s 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\u2019t even see what I was capturing until I got inside, so I\u2019m tr\u00e9s amused at my halo.<\/p>\n

In case you\u2019re wondering, the reason my (not black or grey!) hoodie looks so bulky is because I\u2019m wearing my scoliosis<\/a> [affiliate link<\/a>] and lumbar braces under it, which I have to do when I\u2019m at the computer. They aren\u2019t terribly comfortable, but I need the support and the little bit of pain reduction they give me.<\/p>\n

\n

Day 18<\/strong><\/h2>\n

\"On<\/a>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.<\/p>\n

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\u2019m doing in this shot I managed to snap on my first try. (Go me!)<\/p>\n

I know what needs to be done, but the little steps to make it happen seem beyond my brain\u2019s ability to grasp. I\u2019m motivated: I want nothing more than to complete and check off each task on my To Do List, but I can\u2019t. No amount of motivation will make my synapses fire correctly. A short convo with hubs about bills, and I\u2019m back in bed, whimpering, because cognitive exertion is just as bad for me as physical exertion.<\/p>\n

In response to yesterday\u2019s photo, one of my friends wrote: \u201cYou look great! It\u2019s amazing… I would never guess that you are so sick.\u201d That\u2019s one of the many things that is so hard about my illnesses – they are invisible.<\/p>\n

My nerve pain doesn\u2019t show up on my skin as lines. My head doesn\u2019t look as misshapen and throbbing as it feels. You can\u2019t 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.<\/p>\n

And it feels like I should say something more, on how I\u2019m feeling about the challenge, but\u2026 words fail. As does my ability to sit up straight.<\/p>\n

\n

Day 19<\/strong><\/h2>\n

\"At<\/a>Today\u2019s bad headache, burning shoulders, fibro pains, and hip aches were too debilitating to get out of bed, even tho I not only want<\/em> to, I need<\/em> 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\u2019t forget anything!<\/p>\n

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!)<\/p>\n

I look angry in my photo, but I\u2019m not. I\u2019m 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.<\/p>\n

When I woke, I had a message from Morgan, our challenge leader, who mentioned the affirmation portion of the challenge, where I\u2019m supposed to share one \u201crelating to whatever you\u2019re feeling or experiencing at that moment.\u201d As she said in the course files: \u201cUse your affirmations to speak life and light into your relationship with your appearance.\u201d<\/p>\n

I am writing daily affirmations in the little notebook I posted on the first day, but I haven\u2019t been sharing them. I don\u2019t know why I\u2019m ~now~ okay with displaying all these photos of myself, but sharing my affirmations? It feels more private. More scary.<\/p>\n

But in the spirit of it, I\u2019ll share one – my affirmation yesterday – \u201cDoing this challenge is a type of self-care: making me focus on myself instead of others.\u201d<\/p>\n

\n

Day 20<\/strong><\/h2>\n

\"White<\/a>Today, let\u2019s talk about clothes.<\/p>\n

Some disabilities can make you prone to sensory hypersensitivity – and I happen to have two of them: fibromyalgia and Myalgic Encephalomyelitis (MEcfs)<\/a>, tho there are many others. (If google\u2019s top results are to believed, it only bothers children, but that\u2019s not true. I know lots of adult spoonies who have the same issues I do with sound, textures, etc.)<\/p>\n

Those of you who knew me before I got Full-Time Sick know my \u2018fashion style\u2019 veers mostly into \u2018colorful flower child\u2019 territory, tho I can wear professional suits if required.<\/p>\n

These days, my style is \u201cwhat is comfy and I can stand to wear\u201d. My closet is full of clothes and shoes – most of which are over a decade old! – that I can\u2019t bear to get rid of, even if I have no reason and no place to wear them.<\/p>\n

Some of my clothes actually HURT me – whether it\u2019s the weight of them, or the texture, or the tightness on my body. It\u2019s a visceral \u201cNO\u201d with many.<\/p>\n

I\u2019ve mentioned over the past few days that my shoulders were burning. Turns out it wasn\u2019t 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\u2019t 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\u2019m wearing in this photo, it made a huge difference. My shoulders still hurt, but it\u2019s not bothersome – just the usual.<\/p>\n

Yet another thing my illnesses have stolen – my vanity and the joy I used to get in dressing up. But it\u2019s sort of a blessing: learning to love myself no matter how I look.<\/p>\n

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Day 21<\/strong><\/h2>\n

\"Angled<\/a>Normally, on a day like today, I would rest. I should<\/em> have rested, based on how I felt (even worse now, at night), but I couldn\u2019t. I had to push myself to get things done, because tomorrow I see my GP, and that means I\u2019ll be crashed for the following two or three days.<\/p>\n

My doctor\u2019s office is a good hours\u2019 drive away, and it will take the entire day and wear me out. More than 5 minutes in a car, and I\u2019m in agony, so you can imagine how much pain this will cause.<\/p>\n

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.<\/p>\n

(Which is how I managed to catch a selfie with Cricket, who never really snuggles with me! She was snoozing away, and didn\u2019t 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\u2019m far too lazy to color correct in photoshop!)<\/p>\n

When my brain engaged, I went back to my desk, rested, desk, rested, ad infinitum.<\/p>\n

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Day 22<\/strong><\/h2>\n

\"Two<\/a>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\u2019ll spare us all. At least, this post.<\/p>\n

Suffice it to say that it\u2019s a lot, and I have a list I check before I leave for every appointment, just to make sure I don\u2019t forget anything.<\/p>\n

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\u2019s 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!)<\/p>\n

In case you\u2019re wondering why I would go so far to see a doctor, considering the toll it takes on me: it\u2019s 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\u2019ve followed him to!)<\/p>\n

Also if you\u2019re 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.<\/p>\n

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\u2019s actually easier to see two doctors on the same day: I\u2019m already up and dressed!) Luckily, he could, and that\u2019s his feet next to me while I\u2019m on the table. I should see him far more regularly than I do, but often my ability to leave the house doesn\u2019t align with his office hours.<\/p>\n

I meant to have hubs take a picture of me with my rollator – cuz I\u2019m a #BabeWithAMobilityAid, and it\u2019s nigh on impossible to take a selfie with it – but I plumb forgot.<\/p>\n

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Day 23<\/strong><\/h2>\n

\"Foreground<\/a>When I awoke earlier at my bladder\u2019s insistence, nurse Piper could only have been closer to me if she\u2019d been sitting on my head. Cricket cuddled on my feet, and Maggie snored away to my right.<\/p>\n

Took me a while, but I finally went back to sleep. Am awake now at my stomach\u2019s insistence, deeply thankful hubs fixed me food to eat, and am hoping to get back to sleep soon.<\/p>\n

Like I predicted: total crash day.<\/p>\n

(If you\u2019re wondering about my brown pillow: It\u2019s a kid\u2019s 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.)<\/p>\n

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Day 24<\/strong><\/h2>\n

\"Two<\/a>Y\u2019all, I can\u2019t even today. I slept, then woke up (bladder, as usual), and then couldn\u2019t get back to sleep. I tried, so, so hard, employing all my tools, but no go, despite my extreme fatigue.<\/p>\n

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\u2019s sniffing the grass and plants (well, if you squint, you can see her white legs).<\/p>\n

The hallmark – and least fun symptom – of MEcfs is post-exertional malaise (PEM)<\/a>, or \u201cthe 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.\u201d (quote from Very Well Health<\/a>) In my case, PEM usually hits me the next day, then lasts, well, as long as it lasts.<\/p>\n

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\u2019m trying not to be anxious about this procedure – different doctor, and I\u2019ll be knocked out.<\/p>\n

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Day 25<\/strong><\/h2>\n

\"Two<\/a>As I posted earlier, I had the pain procedure this morning, then came home and went to sleep. I felt kinda bad about \u201cwasting\u201d the feeling-no-pain from the sedation, because a) I never<\/em> EVER<\/em> have ZERO pain, and b) of course, it all was back the moment I woke up from my nap.<\/p>\n

Unfortunately, we won\u2019t 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<\/em> focus. I have a followup with the pain doctor in a week.<\/p>\n

\"Closeup<\/a>This time, I had hubs take a picture of me with my rollator – cuz I\u2019m 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!!!)<\/p>\n

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!)<\/p>\n

Of course, I grabbed a selfie before the procedure. Yes, I\u2019m wearing a different mask. I didn\u2019t want to drool all over the one my friend made me. I\u2019m 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.)<\/p>\n

Affirmation: even tho it\u2019s scary, I am doing things to take care of myself.<\/p>\n

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Day 26<\/strong><\/h2>\n

\"White<\/a>Another fun aspect of this illness is what we patients call \u2018wired-and-tired\u2019. It\u2019s 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\u2019all.)<\/p>\n

And that\u2019s where I am right now, at 1:18am EST on what is technically Friday, the night of my pain procedure. I\u2019m wired-and-tired, so I\u2019m writing this and my closing post. (Gotta write when the muse hits!)<\/p>\n

Unfortunately, my insomnia was very very very bad, and I didn\u2019t 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\u2019t doing a thing.<\/p>\n

So I thought instead of fighting – and failing – for sleep, I\u2019d post today\u2019s selfie.<\/p>\n

Across the street from my GP\u2019s office is a Lidl Food Market, which I\u2019ve never been in, so we thought we\u2019d check it out since it was right there. I decided it\u2019s the love child of a small-town grocery store and an Aldi\u2019s. Their selection of gluten-free items was woefully small, so no joy for me\u2026 but they did have lovely flower bouquets, which turned out to be 30% off. Result!<\/p>\n

When in doubt, get yourself flowers!<\/p>\n

So today\u2019s 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 \u201cVariable as the Sea\u201d series.<\/p>\n

Affirmation: I love my creativity and eye for color.<\/p>\n

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Day 27<\/strong><\/h2>\n

\"White<\/a>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!)<\/p>\n

I\u2019d 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.)<\/p>\n

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<\/a> being one of them!). I\u2019d constantly get asked by authors to review their books. (Unfortunately, I kept saying \u201cyes\u201d long after I should have said no.)<\/p>\n

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.<\/p>\n

\"Tabby<\/a>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.<\/p>\n

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.<\/p>\n

But slowly, I\u2019ve gotten to where I can read again, even if it\u2019s 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\u2019ve promised!<\/p>\n

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<\/a> [getting there] and Terry Pratchett<\/a> [done!]).<\/p>\n

If my illnesses don\u2019t kill me, it\u2019s likely I\u2019ll 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!<\/p>\n

\"A<\/a>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\u2019t done on any of the other photos in this challenge) because the colors were way off and the shots weren\u2019t straight.<\/p>\n

I\u2019ve added two outtakes – Piper sitting in for me while I set up the camera and did some test shots, which I didn\u2019t 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<\/a> tripod [affiliate link<\/a>] (no idea what Piper is doing behind it. Cat things, I guess).<\/p>\n

Affirmation: I\u2019m glad I continued to collect books, with hope in my heart that I would one day be able to read again.<\/p>\n

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Day 28<\/strong><\/h2>\n

\"Photo<\/a>Wow. It is hard to believe that today is the last<\/em> day of the challenge. What will y\u2019all do without seeing my face every day?<\/p>\n

Of course, because I spent so much energy setting up yesterday\u2019s #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.<\/p>\n

And if you haven\u2019t figured it out by now, getting adequate sleep and rest is a VERY important part of managing this illness. I don\u2019t get enough? I suffer. Quite literally. And more than usual.<\/p>\n

Thus, I\u2019m quite tired and crashy today, and that means today\u2019s selfie is another one of me in bed. But this time I\u2019ve got both nurse Piper perched on my chest, and nurse Maggie (the dog) next to us.<\/p>\n

Affirmation: I am stronger and braver than I think, and love is an inherent part of my whole self – body, mind, and spirit.<\/p>\n

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Day 29
\n<\/strong><\/h2>\n

\"Collage<\/p>\n

Just kidding! I\u2019m 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\u2019ve not been doing (like filing medical bills, and working on taxes [such larks!] and writing reviews [bad me!]).<\/p>\n

I don\u2019t really know what I expected when I agreed to do this challenge, and I\u2019m still contemplating how I feel about it.<\/p>\n

I know I\u2019ve shared a LOT about my life these past 28 days, but there are so many more topics I didn\u2019t 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).<\/p>\n

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\u2019s happened to others). Feeling bad about so many things (like your dietary needs), even tho you can\u2019t 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.<\/p>\n

More importantly: I didn\u2019t 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\u2019all know what I\u2019m 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\u2019t 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.<\/p>\n

(That\u2019s not to say he\u2019s perfect; he\u2019s 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\u2026 Oh, and the snoring. Heaven help me.)<\/p>\n

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 \u201cin sickness\u201d and don\u2019t stick around, like the husband of one of the patients in the documentary Unrest<\/em><\/a>.<\/p>\n

I hate it when people call my husband a \u201csaint\u201d – as if the accepted – and expected! – response is that he should have left me. To him, leaving wasn\u2019t even a thought or a choice.<\/p>\n

At some point, unless they drop dead, everyone<\/em> will become disabled. We need to do away with that crappy notion that disability is a moral failing and that it\u2019s okay and understandable to leave if your partner becomes ill and needs care. It\u2019s NOT OKAY.<\/p>\n

However, I will readily call my husband a mensch, because his picture should be in the dictionary next to it.<\/p>\n

I also wanted to send a big\u00a0T<\/span>H<\/span>A<\/span>N<\/span>K<\/span> Y<\/span>O<\/span>U<\/span>!<\/span><\/strong> to everyone who followed along on this experiment on social media. I appreciated every react and every comment!<\/p>\n

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\u2019s office); one book finished reading; zero good days; nine productive days; three semi-productive days; two non-productive days (where I wasn\u2019t quite crashed, but couldn\u2019t do anything either); ten crash days; and 28 selfies and posts.<\/p>\n

Oh, and my recommendation? Do this challenge<\/a>. You never know what you\u2019ll learn about yourself, or who you might reach and inspire.<\/p>\n

Loving myself, and you,
\n\"sig\"<\/p>\n

\/ El Fin.<\/strong><\/h2>\n
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About the Challenge Leader, Morgan:<\/strong><\/h2>\n

\"MorganMorgan is a Chronic Illness + Holistic Wellness Blogger and Content Creator at Is Was Will Be<\/a>. After being diagnosed with a rare chronic illness, Myasthenia Gravis<\/a>, Morgan started blogging as a way to work through her struggles of living with a chronic illness.<\/p>\n

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.<\/p>\n

Connect with Morgan:<\/b><\/span><\/p>\n

\u2022 <\/b><\/span>Blog<\/a>
\n\u2022 <\/b><\/span>Instagram<\/a>
\n\u2022 <\/b><\/span>Facebook<\/a>
\n\u2022 <\/b><\/span>Youtube<\/a><\/p>\n

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PS: If you enjoyed or appreciated what you read, and aren\u2019t currently a subscriber, then please follow my blog!<\/b><\/span> Simply enter your email address in the box under \u201cFollow dSavannah Rambles\u201d that\u2019s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.) Thanks!<\/p>\n

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