I would say the past couple weeks have been like a roller-coaster, but I’ve never been on one, so I don’t think I have that right. What have I been on? Trains. Busses. Planes. Pain meds. Herbal extracts. Okay: the past couple weeks have been like travelling in a bus that’s on pain meds, and therefore can’t figure out if it’s actually a plane or a train. Stir in herbal extracts.
Last week I wrote (and didn’t post): “I feel so pathetic. I’m so tired. I don’t even know how I made it through the day. I just don’t know what the point is anymore. I fight and I fight, I write inspiring words on my blog and tell people that I’m okay, it’s hard but I’m okay, but I am not okay. It’s all futile, all the hard work and the torturous treatments, they aren’t working, they aren’t fixing me, I’m still like this…. It all just seems impossible. It feels like I’m being punished, and yet held up on a pedestal by my teachers who admire how I handle it all. I don’t want it anymore. But what always happens is going to happen again – I’ll feel like this, I’ll go to sleep, I’ll wake up, I’ll start getting ready and then I’ll just go through the motions of life and time will pass and before you know it I will have ‘made it through the day’ and be ‘coping’ again. It’s inevitable.
I…
I…
I’m… just so
Tired. Of all of it. I can’t hold back the tears any longer. How am I going to make it through? Is this all that life is, just awful things and ‘coping’? Is this what the rest of my days will look like? Cause today was bad.
I feel helpless, and hopeless.
E.”
From the strength going on in my last post, I went into a tsunami of fatigue. It lasted a while. I spent the whole next day just staring, because I was too tired to even read. I only smiled once — smiling isn’t energy conserving. The next day I had a test, and the only thoughts I had the whole time were, “Yeah, I know the answer to that. Oh, I have to write it down? I need to move my hand? Do I really? What will happen if I don’t? I don’t think I can. I’m so tired.”
There was also an annoying question on the test that required some calculations (it wasn’t a math test) and I knew that with the brain fog happening I would mess the calculations up and lose the points for the question, so I politely raised my hand.
Me: I know it’s pathetic and sad, but I need a calculator to answer this question.
Teacher: Really? Ella, you really need a calculator? You’re serious?
Me: Yeah, I really do. I honestly don’t know what a million divided by five is right now.
Teacher: Really? Really? You don’t know how to do that? Are you joking?
Me: No, I’m not joking. Can I use a calculator or not?!
Teacher: Okay, I’ll tell you. What do you want to do?
Me: A million divided by five.
Teacher: Ella, it’s 200,000.
It’s a good thing I asked, because I thought it was 250,000. When I’m that sick, I can’t think! I was not happy with my teacher for the way he responded, loudly, in front of the whole class, making a big deal over the fact that I couldn’t do simple math. He’s not a mean guy and he really didn’t mean to be mean. He generally means well and he’s been very kind to me, but sometimes he’s clueless.
If I tell you about every day, this post will never end. I can endlessly find more words to describe my pain and my suffering. In short, I had days that were up and days that were down (like the day that lead to the italics). I had moments of great depression and moments of elevation. Well, maybe elevation is a little extreme; moments of feeling slightly hopeful. Another test this week was messed up because of fibro fog. It’s so frustrating; it’s not that I don’t know the material, it’s that I can’t get it out of my brain.
My right foot has gone off its rockers. I was talking to a friend who lives on the other side of the world and suddenly my toe just dislocated itself. It felt like the toe next to my big one (does it have a name?) just snapped downwards and underneath the one on its right, and I couldn’t get it to move back. My whole foot kind of seized up and I just looked through the camera at my friend and said “I have to go call my mom now”. I wrote to her later and explained it all. I have no idea what it was, just some weird cramp, but it was extremely painful and scary. It went back into place after I laid it on a heating pack, and I know that it didn’t actually dislocate itself, but it felt like it did.
Then a few days ago, when I was having an up day, I had a couple friends over for a movie, and when I bent down to press play it happened again, exactly the same way: suddenly, without me having done anything, my toe just pops out of place and gets locked in a different position. I must say, I’m very proud of the way I handle sudden pain. I am the picture of serenity. Ish. Anyway, it went kind of like, “Hey, do you think you could reach above the fridge? There’s a purple pillow there. Yeah, could you just stick that in the microwave and hit start? Oh, thanks! What? Oh, nothing. My toe just feels weird. Yeah, I’m fine on the floor. Oh, thanks, that’s really sweet, but I honestly don’t think it would go well if the two of you tried to lift me and swing me on the couch. I’m good, I’ll sit here for a few minutes.”
Other than that the night was great. Unfortunately I still feel it spazzing out. My whole foot has been cramping ever since and my toe still feels dislocated. There seems to be no end to the weird sensations that plague my body daily. Sheesh, I sound like I’m 80.
I’m tired. I’m scared I’m going to run out of fuel at some point. I have a few high-pressure weeks ahead of me, but I need to work a lot on calming down, seeing as that is probably the cause of the foot fiasco, as I have taken to calling since half-a-second ago.
Yours,
Ella
Song Quote:
I think I’m being shunned by my feet… again. –Homeless, Ed Sheeran
Okay, I’ll admit, I have been waiting a long time to use that quote. Glad it works so well here!
P.S. I would love it if you would leave a comment with your favorite quote. It can be from a song, something you saw online, a well-known person’s fancy sentence, a life motto, anything that comes to mind when you see this, really. If you know where the quote is from/ who said it, please include that too. Thank you in advance!
Sick and Sick of It 
I have several solutions to your sudden foot cramps. I know them well. 1) Get in a very hot shower immediately–or just stick your foot under the hot water tap of the tub. (faster than the heating pad.) I also sometimes put a wet towel in the microwave and then wrap it around my foot, ankle or leg—depending on where the cramp is. 2) keep a bottle of cider vinegar near your bed or wherever you usually experience the cramps. Take a swig. It alleviates the cramp almost immediately. Tonic water works, also, but must contain quinine.. 3) Eat a banana every day and take potassium with magnesium and calcium each night before you go to bed. Kiwi and potatoes also have lots of potassium. 4) Drink lots of water. If you do these things, your toe cramps will lessen or depart your life!
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Aren’t you ashamed to care so much to make all the money you can, and to advance your reputation and prestige, while for truth and wisdom and the improvement of your soul you have no care or worry? – Socrates
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It’s really encouraging to know that there are other people trying to live and deal with this kind of chronic illness. It often feels incredibly isolating and lonely, and it tries the patience of even the most supportive friends, family, and loved ones. To say nothing of the sideways looks many people will give you when you try to explain. I just spoke to the adviser of my PhD program last week about my health, and he gave me that exact look–the look that says, “And do you see Elvis, too?”
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song lyrics are the greatest – I have 6 bracelets with song lyrics on them that all mean something to me and have been known to embroider such quotes onto cushions and for my wall
“look up through the trees to feel as small as you can, you hear the clocks counting down.
the nights are longer now than ever before, but now you see, the lights from the town”
Editors – Escape the Nest
“how strange it is to be anything at all”
Neutral Milk Hotel – In The Aeroplane Over The Sea
“Umbrellas wash away in the rain”
Cold War Kids – Bitter Poem
“waiting and fading and floating away”
Silversun Pickups – Panic Switch
I could be here all day :)
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how about this one:
“to live a creative life we must lose our fear of being wrong,” joseph chilton pearce.
Much of the pressure we create is from ourselves,
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“Keep on keeping on” (Not sure where it came from, but Grandad used to say it to me, and it became my motto :)
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Witchcraft was hung, in History,
But History and I
Find all the Witchcraft that we need
Around us, every Day–
Emily Dickinson
For myself, she reminds us of the incredible diversity of nature, life, all of time itself. Hope you’re having a better day, tiredella. Peace.
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Do you mind if I use your idea of ending posts with quotes/song lyrics? I really like it. I’d of course, give you credit when I introduce the addition to my blog posts. :)
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Permission granted!
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I have two favorite quotes, both of which I think you can use. The first, “Sufficient unto the day is the evil thereof.” It is from the Sermon on the Mount which has a lot of other powerful ideas. Think about it when you get down. The second, “Try not. Do or do not. There is no try.” Yoda said that in The Empire Strikes Back. I have used it several times in my blog if you are interested. Best of luck in your journey.
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Also feeling hopeless and gloomy since last week :/ Not a good motivation when having to write a term paper soon. Hope I will get a bit more cheerful soon.
That toe thing is a cramp :) I often get it when swimming in a pool. It feels quite ugly and can be painful, too. I also wondered what that might be. It feels like the one toe hides under the other, but it doesn’t reall, it just feels like that :’D I think that’s the strangest place you can get a cramp. I think it happens because of lack of magnesium.
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“You are a ghost, driving a meat covered skeleton, made from stardust. What do you have to be afraid of?”
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“Happiness can be found in the darkest of times, if one only remembers to turn on the light.” A quote by Dumbledore in the Harry Potter series. I know how hard this is to do when you’re in pain, but we must try to find some joy in life. I wish for you a day where you find some happiness, and a little relief from the pain.
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Dumbledore will live forever in our hearts
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“Pain makes people change, but it also makes them stronger.”
It is up to you to decide how you will change. I also deal with chronic pain and yeah it is awful trying to study and retain information. Try to keep positive. Don’t let it beat you.
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I feel I am on that same roller coaster with you, Ella! It’s been very difficult lately being able to formulate my thoughts while at work, which in turn embarrasses me beyond explanation. I have a job where it is my sole responsibility to organize a team, their tasks, and communicate needs to stakeholders. When my pain overshadows my ability to think straight, I find myself shrinking internally…praying I can crawl under a rock; praying that my challenges won’t be as visible to the outside as they are to me right now! This is an old analogy from when I was younger, but I chant to myself all the time, “I think I can; I think I can; I think I can” with the image of a choo-choo train climbing a steep hill, smoke pouring out the top as it struggles its way to the tip-pity top! It just makes me giggle to see that image in my head and I think, “If a cute cartoon train can do it, so can I!” :-) ….and so can you. Giving up is easy, yes, but eventually you will not enjoy that life either and it will be so much harder to get back to where I am today, so I have to keep going. Keep going sweetie, even if it’s at a glacial pace.
Gentle Hugs!
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“Darkness is just a path between light and light.” – not sure who said it
and . . .
“We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” -Pema Chödrön
and . . .
“I’m sick and tired of being sick and tired” – from “Sing Me a Happy Song” by Melissa Ferrick
xo
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Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned. – The Buddha
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I’m not sure that it’s my favorite song, but this verse from Sparks’s “Let The Monkey Drive” always brings me cheer:
“With obscene gestures/ Learned from me
He works off some/ Hostility
Toward drivers who might cut him off or slide
I think his license/ Has expired
He seems to be/ A little wired
He has some trouble staying on our side.”
I think there’s some wisdom to be had in considering the scene.
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“Life is wonderful!” I write these words after tremendous amout of pain (all kinds) and after during some periods of my several lives I wanted to finish them myself. I understood that you have to pay for every second of happiness. Best to you! .
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“In the depths of winter, I discovered in me lay an invincible summer.” – Albert Camus. We are always stronger than we realize.
<3 Em
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“Mama said there’ll be days like this there’ll be days like this my mama said
Mama said there’ll be days like this there’ll be days like this my mama said.” – The Shirelles
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“Success is getting what you want. Happiness is wanting what you get.” ~Dale Carnegie
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Hi Ella- I understand somewhat what you are going through, although mine is an emotional pain. That brain fog is the same. I find myself wondering what I am doing, wandering from room to room, not remembering what I just said. I commend you for sharing your experiences and thoughts with all of us. I have been told it takes courage to put yourself out here, but we know this is the easy part. It takes courage to face the pain each day wherever that pain comes from. Know you are not along in this, we all have to stick together. Stay strong and be well.
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Here is a one from my father, that has never been out of my mind:
“A man is only as good as his word”
Then after my stepmother passed away from cancer my father said “Son after 37 years of marriage I am lost now, but remember to love your wife every single moment, because you never know when that moment will be gone”.
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Cuz I’m only human. And I bleed when I fall down. I’m only human. And I crash and I break down.
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And I forgot, my favourite quote from Hunter S. Thompson: “Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!” It might sound a bit contrary to our experiences with fibromyalgia but do what you can, when you can and don’t be a square peg in a round hole. Life’s too short to conform.
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Gone through the same, you’re not on your own. And very interesting to read what happened with your toe because mine did the same thing, drew back until it was upright and so painful. It used to happen mostly at night and I’d have to get up because the pain was so bad. I hadn’t pinned it to fibro but it makes sense now I’ve read your post.
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My CFS/FMS scripture that got me through my darkest hours and gets me through each day now that I am doing better – (doing better includes being in pain 24/7, brain fog moments while teaching, etc.) Romans 12:12 “Rejoicing in hope, patient in tribulation; continuing instant in prayer,…” It’s a plan that works every day for me! I am sorry that you are struggling so much. I was where you are about a decade ago. I have gotten much, much better. There is hope!
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“Hope is a waking dream” -Aristotle
I also get the cramping/twisting of the toes and feet. The first time it happened it was scary. Now it’s just another part of the day. (Pretty much the way I look at all the “inconvenient” parts of ME.)
Just want to tell you that you are amazing with everything you are able to accomplish. Don’t ever doubt it!
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My current favorite quote is “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” -Vivian Greene.
I get the toe “twist and cramp” as well, it’s bizarre as well as excruciatingly painful. Fortunately for me it’s fairly infrequent, hope you find it is for you too!
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Thinking of you while you’re struggling. I suffer from chronic pain and can relate to the brain fog and it’s effect on work and study. I wish I could say more, or do more, to help. I really do.
My favourite quote is by Viktor Frankl in his amazing book: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, (Man’s Search for Meaning)
Gave me some control back in a situation where I felt completely out of control.
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I know how exactly how you feel, especially with the brain fog thing. I humiliate myself on a daily basis.
My favorite quote today is “And the sooner you accept the dull, miserable reality of your existence, the happier you’ll be.” (Chet from Turbo).
It sounds like a horrible depressing quote, but it makes me laugh, and snaps me out of it when I’m in an awful mood.
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Ella you are not insane. I lived it with my wife and thank God she was open enough to share with me what was going on. The thing that helped her the most was to try to stay in
today and try not to think about tomorrow. Do as much as you feel like, rest when you have to, and love who you are no matter what.
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“Start by doing what is necessary, then what is possible, and suddenly you are doing the impossible.” – St. Francis of Assisi
I think you’re already doing that.
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“That some good can be derived from every event is a better proposition than everything happens for the best, which assuredly it does not.” – James K Feibleman
“You cannot expect victory and plan dor defeat.” – Joel Osteen
Concealing an illness is like keeping a beach ball underwater. (Don’t have who this is from recorded)
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“Many may but few cannot.”
–Me
And it makes about as much sense as I do most of the time.
–Bob
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“In spite of everything I shall rise again;
I will take up my pencil,
Which I have forsaken in my great discouragement,
And I will go on with my drawing.”
Vincent Van Gogh
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“You – you alone will have the stars as no one else has them…In one of the stars I shall be living. In one of them I shall be laughing. And so it will be as if all the stars were laughing, when you look at the sky at night…You – only you – will have stars that can laugh.”
― Antoine de Saint-Exupéry
Always my favorite…The Little Prince…wore out four copies since high school.
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