Right now, I will do something very small and have to sit down immediately after or during a slightly more rigorous task, and it’s not the pain that’s knocking me down so hard, although there is a lot of that, I’m just pretty damn exhausted. Like, my bones are way too tired to walk to the mailbox or make it down the stairs to the garden, but I’m still able to fight through and manage those things sometimes. It’s very confusing. Overall though, the fatigue has ramped up to a point where I’m scared a little.
This is not meant to be a bid for sympathy or anything, I just have to have a place to put all this down and get it out of me. My body won’t allow me to do much of anything else and even writing has me fading in and out of consciousness because it leaves me so fatigued. To be completely honest, I’ve been feeling a lot worse lately. I pushed myself trying to create a small business that was never going to happen, and in many other areas of my life, and none of my accomplishments have added up to anything lately, not even one completely clean room. I have learned a lot and there were tiny moments of excitement and victory, but that isn’t anything I can put on my resume, really.
It’s depressing to feel like your health is going in the opposite direction that you’re aiming for. A lot of us are familiar with that feeling though, unfortunately. It’s just another part of chronic illness unless you can find a treatment that works. For a while things will hold steady symptom wise, and then a cluster of new ones will pop up one after another, which is what has been happening recently. Not every single new symptom stays around long-term, some of them will just last the length of this particular flare up, and some of them will attach themselves to my illness and they will be added on top of my daily already unmanageable pain, fatigue, and bodily systems that are completely out of whack. But these new symptoms will not be so courteous as to show up clearly on a test. Just abnormalities here and there, nothing to make an easy diagnosis off of. It makes my head spin trying to get a clear grasp on even the list of weird things that have happened with my body, and a lot of it isn’t stuff I feel comfortable sharing.
This flare up has brought with it a bout of sleep paralysis episodes, limb tremors and increasing muscle weakness, much worse than usual chest pain, rib dislocations, absolutely unpredictable new headaches and some severe migraines that actually got the better of me and landed me lying down until they subsided, hip subluxations on both sides, knee instability and weakness, poor typing and speech, including mixing up words, writing something completely different from what I was intending or thinking I was writing, forgetting phrases and words, increased inability to finish a sentence because I can’t remember why I started it, using big words but forgetting all the small ones, dizziness, trigeminal neuralgia attacks that feel like being struck with lightning over and over again in the same spots on my face, occipital neuralgia that is like being chiseled into on the back of my head, or like someone is grinding a screwdriver as hard and slow as possible into my occipital nerve, tmj issues making it a challenge to eat/smile/talk too much, jaw dislocations hundreds of times a day, lack of coordination and hand dexterity as well as random violent spasming when I try too hard to control my muscles for extended tasks like painting and typing, really painful joints all over, fatigue so heavy I feel like my veins are full of lead and my muscles are made of tissue paper and my bones are filled with cement, GI issues which all of a sudden include throwing up just about every other day, and delayed stomach emptying with all the associated nausea and pain and hating food/food hating me, possibly gastroparesis but I’m hoping not, problems associated with migraineurs even when the really severe head pain is not present (olfactory hallucinations, auditory hallucinations, light/sound/smell sensitivity, big blurry spots or color spots in my vision, things that look like shiny, constantly moving sprinkles all over my field of view, thinking things are moving when they aren’t, as well as not being able to track movement very well), falling asleep suddenly after exertion with no warning, feeling like I’m walking on razorblades and broken glass, sudden moodswings mixed with lots of feeling hopeless or just numb and dissociated from my disobedient body, muscle cramping, brainfog that is stronger by far than my Ritalin prescription, not understanding what people are saying unless they repeat themselves a few times, some obsessive behaviors I cannot stop doing and ptsd flashbacks, skin that hurts like thousands and thousands of nettle stings, and just so much more, but it would take so long to list, and this is why seeing a doctor once every 3-6 months is totally and completely unhelpful.
And I’ve been like this for two and a half weeks now, and it keeps dropping new surprises on me so I’ve got no idea when it will let me go…
I lost 15 pounds, and that was startling and positive. Not sure why I was so startled, I think it’s hard for me to notice the healthy changes I make and pat myself on the back unless some kind of tangible progress comes out of it, but lately I actually have noticed myself doing better at picking the salad from the garden over chips or pasta on the side, I’ve been back into yoga in bed, and in my better moments I try to sneak tiny bits of yoga into my day, with my arms close to my body and not pushing my flexibility to it’s max because I’m not in that kind of shape and my body can and will bend too far in every direction if I don’t watch myself in a mirror while I do it.
I’m so exhausted that it makes me laugh that I’m adding yoga back into my days but I can’t shower more than once every five days. Priorities slightly skewed? I don’t know, a shower is one very big expenditure of spoons that you’re committed to once you start, and yoga I can stop any time it hurts me, I can modify it to hurt less or not at all and to be done lying down even, and I dole out spoons one at a time to each little micro-session which is much less punishing on my body than taking a shower. God I miss being able to do that every day. The stupid shit we take for granted when we are healthy, I was so greedy taking two or three a day during sports and summer or just to get warm in the winter, and I never imagined I would ever give up my obsession with being sparkly clean every single day. It hurts to think about stuff like that though, and in general I just try to accept that things are the way they are and not ask “why me?” too much.
Not being able to shower is a big gauge for how much of a toll this has taken on me. The things I would have never given up if I had a choice, the gardening every day and walking for hours, the freedom of driving and earning a paycheck even if I didn’t enjoy the job or the commute sometimes, my clean house, the freedom to work out or go out with friends whenever the mood hit me, frequently visiting vintage shopping and buying fancy coffees just to treat myself, painting whenever I had a creative idea come into my head, preserving and cooking food especially when it came from my garden, baking bread almost every day, fashion, being able to complete deadlines and not be a total flake, being able to plan my next day and stick to it,
I feel bad enough on a daily basis that younger me, who had a damn high pain tolerance, would have been asking to go to a doctor almost every morning. But I don’t go even when it gets to be unbearable, because it’s so discouraging to be told more than once every 3-6 months that there is nothing new to try, nothing else to do that is in my price range, nothing, nothing, nothing, and to be treated like a drug seeker, a whiner, a lazy kid who can’t be bothered to get a job, when I just want to get better. I just want some hope, some kind of a future to plan on and look forward to. I don’t want to have to take these drugs. I don’t want to have to take two sparse and precious oxycodone just to get through taking a shower. This is not something I constructed to get out of working. I miss working. I’m young, my ability to work was my future and now I’m very lost.
I’m reaching for that point towards acceptance of my illnesses and new life where I can start to explore my talents and try to find more solutions, more small improvements, more joy in my life. I feel like it’s both close enough to grab and pull closer and simultaneously so far away that I fear I just can’t get there. I know I can only take it one day at a time and keep looking for the small victories, the shiny bits and the lessons learned no matter how painful, so I can quietly celebrate my life for those wonderful things amidst the chronic fatigue and pain.
It’s amazing how often health providers get asked directly or indirectly whether someone experiencing pain is ‘faking’ it. The short answer is the most accurate – we can’t tell. We’re not lie detectors, there is no ‘gold standard’ to work out whether someone is pretending or not, and the question is based on erroneous thinking about pain and pain behaviour.
I can almost feel the spluttering at my last sentence from some readers!
Let’s look at this more closely.
Remember the biopsychosocial model of pain states that the experience of pain and pain behaviour is influenced by three broad groups of factors: the biomedical/biophysical factors such as extent of tissue disruption at the periphery (or site of trauma), neurological changes of transmission and transduction (throughout the peripheral and central nervous system), and disturbance of the neuromatrix.
At the same time, there are psychological factors such as the level of…
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Does anyone else accidentally assign music to certain periods in their life?
I’ve been doing that since I was… little? Like 9 or 10 at the latest. It used to be that I would pick a song that reminded me of a feeling I had while reading a book. I was reading a book a day, sometimes more, and each novel got its own song, and those songs served as really great triggers to remind me of the entire plot/emotions of each particular book. I don’t do that anymore, but every month or so a new song or an old one will float into my subconscious and stay there, playing on and on. The one that keeps getting running through my head right now is Suffer Well by Depeche Mode.
Yes, I have always had this affliction for Depeche Mode, The Smiths, The Cure, New Order, Joy Division, Bauhaus, etc. Classic goth music. Sleek, a little shiny, still as awesome as it was the day they conceived it. Make fun, I do not care! 🙂
I have loved this song forever, well, since 2006, when I was still in high school. But last month when I started listening to music again, I found it on my ipod and Dave Gahan and I got reacquainted. We warmed up to each other pretty quickly, I remember how I felt when I first heard it, all my suffering was psychological and stress-induced at that time, and my take on it was more about my how the antidepressants I had just been told to start taking were fucking my body and brain up in ways I hated. Now, listening to it again, I found something much more positive in this track.
Dave Gahan sings “Just hold on…. Suffer well. Sometimes it’s hard, so hard to tell.” Amen.Yes. It is hard to tell. I feel like people should be able to see the pain in my eyes or all around my body like fire, but they cannot. Only if I start acting off or unresponsive does anyone catch on. I’m still not used to it, I don’t know if I will ever get over feeling like it is arcing off my body, surrounding me in a fiery red that people should be able to see from a distance. The pain is so overwhelming that I keep thinking it must be visible, somehow. I stare at my betraying limbs, wondering how something that looks normal other than the spasms and twitching could possibly cause so much pain, and how, how, how can it look so normal?!
Lately my body has been plagued by infections I am having trouble getting rid of, but which I refuse to treat with western medicine yet because I know my body will eventually fight them off, naturally and more healthily than with more pills than I already take. One after another the severe infections appear, and then when I think I’m done with them, the cycle seems to start over, all over my body. I make progress, slowly, until I get sick or knocked down by a flare up for a while and my immune system tanks. I know I will prevail if I take care of myself correctly. It’s a learning curve.
This is where I take a page from an excellent Depeche Mode song, and try to suffer well, since the suffering seems quite inevitable right now.
I will also strive to care less that it is so truly hard to tell how much pain I am in. I am smiling on the outside, so I cannot hold those who mean well around me accountable. That is what words are for, after all! Definitely something for me to work on in the future!
I hope that if you are suffering tonight, you are enduring it well. I know that sounds odd if you haven’t been dealing with a chronic illness, but all my fellow spoonies will understand that I mean it with all the love in the world. Our suffering is not always avoidable, but we can choose how we handle it with practice.
Throughout all of this blogging experience I realize I have made a mistake. I often write as though my body is this weak thing that never gets off the couch and that I never use like I used to. While it’s true that almost every day is a series of compromises compared to my old life where I never stopped for a minute, there is still actually very little time in my life for rest. I am trying to make more. I am trying to encourage others to make more room in their lives for real, relaxed rest. But I know how hard/impossible that is with people who depend on you.
My body is not frail and weak, not by design any way. In my past life, I used my body every day for real, repetitive physical work, and then I came home and worked in the garden and on fixing up our home. I find it hard to give up those habits of the past me. The problem I see with continuing on like I am, without ever learning how to put my rest first, is that I know people with fibro who work full time and have continued to work without stopping since their diagnosis, and I see those friends take handfuls of pills now to keep on their feet, and they are miserable every second of it. None of them have improved by relentlessly pushing through the pain. They seem to regard their bodies with pure hatred, and I feel so bad for their struggles. Not to say I do not know some successful working friends with fibromyalgia, but those who are successful have learned to adapt, change, flex, and yes, compromise. They are not attempting to live the exact same life as before their illness hit.
There is acceptance before there is success, with a chronic illness. Acceptance does not mean giving up, it means finding another way forward. I am trying to find that way, but I don’t know where to look.
The other aspect I must find is balance. From past experience, the less I move, the more I hurt the next morning. However, too much movement can also send me into a horrible flare up. Other times, it’s just the tiniest sneeze or attempt to tie my shoe that send me into a downward spiral of pain and nausea and anxiety. I cannot seem to figure it all out. The longer I sleep, the more I hurt the next morning. If I don’t sleep enough I hurt more too. On and on like that, until it becomes more evident than ever before that having fibromyalgia and ME means I live a life balanced on the blade of a razor. One wrong move sends me plummeting into an abyss. The climb back out of which is terribly arduous and depressing and takes everything I have, every single time.
Until I can learn to stop falling (with the understanding that it will get better but never stop completely) the best I can do is to become better at getting back up again. The falls are inevitable, really. My ability to stand back up, to keep fighting, is all that keeps me from staying at the bottom of the abyss.
This determination to keep going, it demonstrates beyond a shadow of a doubt that my body is not weak. It is fighting. I am fighting. FMS/ME can’t take everything from me.
I will keep pushing myself. And I will keep doing more and more physical activity despite the pain, but I will not pretend that I do not have these illnesses. Not to myself and not to anyone else.
I am not weak, I am still always on my feet, never napping, never stopping for too long. There are those days when I do feel weak, but it is temporary. And I am thankful for my still-strong, still active body. Though I am mostly housebound and cannot figure out driving or working with all my meds and issues, I do not sit in one place with my heating pad more than once a week, except at the very end of the night, in bed. I do not lounge on the couch, I do not lay down in bed. If I need to lay down, it’s usually the floor that I end up on, because I’ve pushed myself that far and suddenly I am done moving, and even crawling is a challenge then. Some days pass me by and I feel like I have barely even participated in them at all, and sometimes I have nothing to show for myself, no matter how many time I paced back and forth, doubled over in pain every few minutes, trying to remember to do a task that has slipped my mind, yet again. But wallowing in bed is not in the script. If it gets that severe, I will know, my body will force me into bed, but it is not there yet and I will fight with everything I have to stay on my feet even if I get nothing done, even if the pain has me by the throat and chest, and I stare off into space and create jumbled garbage when I sit down to write and paint, even if I doze off in my chair for a few minutes at noon, and snap out of it by using the pain of doing the dishes to wake me up. It’s war. Whatever means necessary, you know?
This is life, fighting a long battle with a group of cruel illnesses who are using my body as their host. Tonight, after I have spent all day floating in a strange haze, I cannot be angry at myself for doing my best today despite the severe brain fog that plagued my every heavy step. The laundry is somehow done, and I managed to take a shower for the first time in four days, which feels like absolute heaven. I am snuggled up in a long sleeve waffle knit, two layered zip up hoodies, leggings, loose pajama bottoms and two pairs of soft cushy socks. Yes, it’s coooooold here!
Being cozy despite not being able to get comfortable, I have to reflect that many are not warm inside this winter, and I am so lucky to be here in this house wearing all these soft clothes, clean and dry. Suddenly my world is brighter and kinder, and I am transported out of the pain of my body and into my surroundings, able to participate again for a brief time, and thankful for every second of it!
If it is a particularly painful or fatigued day. I will allow my body to dictate some of the events of the day, but not all of them. It is enough that I keep trying to find my way, right now. As long as I do not give up, then this is learning, and it is messy and unpleasant and even at times thrilling. There are things my body can still do that would not have seemed possible a year ago. But there is also the agony of steadily increasing pain over time, the horrible fear that my strength and toughness will be outstripped by my worsening illnesses someday. I cannot get rid of the fear completely, but I can choose to not let it take me hostage. Who cares what tomorrow brings, because there is no controlling that. However, I do have control over my reactions, and that is enough to get from here to a better place, in time.
I can choose to live, right here and right now, no matter what is happening with my body. There is so much power in that.