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.
Distraction Therapy and Art Therapy, rolled into one happy technique for doodling away the pain. I really do love this idea and immediately decided to go buy a few of these coloring books for adults!
This is one I sketched with pen and meticulously colored in with cheap watercolor pencils so as not to go insane while I was working at the Oregon Museum of Science and Industry, in the theater, in the dark, well before I had this kind of chronic pain or illness:
I totally remember how calm I felt while I did this and think this might be a new favorite distraction technique. Big thanks to Moongazer for the wonderful idea and for sharing it with everyone!
Distraction Therapy was first mentioned to me by an Occupational Therapist after my surgery but when I asked her for ideas (expecting her to have loads up her trained professional and experienced sleeve) she basically shrugged at me and googled ‘meditation’
So it is worth sharing snippets and suggestions amongst ourselves, methinks.
I find that sometimes, especially during a flare up of my FM, when the pain pills aren’t quite enough, sleep isn’t happening, and I am either too ‘foggy’ or bored or just plain restless for other things to occupy me – there is something I sometimes turn to as a distraction.
I have actually ummed and ahh’d a bit over posting about this, because I imagine there are people out there who might find this amusing, silly perhaps. But I saw another post about it the other week and decided Stuff it!! I will write about it.
View original post 384 more words
With a chronic illness or two (or five), it can feel, especially at first, like all mental growth and development is in limbo, that it is all so beyond you. Your ability to focus, care, be motivated/inspired, or be fully present in life is even suspended, and it takes a huge amount of effort to immerse yourself in any part of your day, from work to free time, pain can be so overriding that it even becomes difficult to focus on your significant other’s needs like you used to, or even to be aware of them. You feel terrible about these things, we all do. No one likes to have to compare our old selves to our new selves post chronic-illness.
And I respect that, very much so, and do not want to take away from the reality of those moments. Though I often try to emphasize the positive on this blog, I will be honest, there days when I have to write the positive message I want to say over and over again until I really believe it, or skip the “fake it till you make it” approach and wait to post something until I feel less cynical about life. I am often stumped by my own depression, my own guilt. My illnesses and pain often overwhelm me and leave me so hopeless I can’t even bear to write about it. I never want to trivialize the absolute difficulty of living in constant, unrelenting pain that threatens to burn you alive with its intensity. During times when I feel that terrible and dysfunctional in every way, I tend to shut down, pouring my energy into worry, fear of rejection, and often anger, among other negative emotions. I do not believe it is anyone’s “fault” if they feel upset about something. There is always, always, always a reason for why people feel and act the way they do, and though that may not excuse behavior that is harmful towards others, it also provides a framework for starting to understand those in all stages of recovery or maintenance with a chronic illness. Just because some of us happen to be really good at dealing with pain, and some of us do not handle it as well, does not make those of us who are struggling any less worthy of love or admiration for where we are in our life and what it has taken us to get there. It also does not give someone who is in a better place mentally, or who feels like they are in a better place, the right to demerit someone who is just starting out on this journey, or someone who is picking themselves up from the depths of hell for the 42nd time and trying again, or even someone who isn’t yet aware of the path in front of them and can only focus on their own misery all of the time. These are all stages of the same state of existing and trying to thrive with a chronic illness. We are no better or worse than anyone else in pain, or bedbound, or learning to walk again, or even than someone who has given up, spiralled deeper and deeper into the sadder side of illness. No one wants to suffer. We were not born aiming for misery. At no point did someone walk up to us and sell us this illness, we did not choose it, we would do anything to be better, and many of have done everything. This is hard. Bottom line. You are allowed to have days, weeks, months, years, where you feel like a failure. You are allowed to grieve, hurt, or be miserable. You are allowed to scream, cry, or feel the hollow, numb, hopeless apathy wash over you for a time. These are your emotions, you are supposed to feel both highs and lows, and all things in between.
No one gets to tell you that you aren’t dealing with your illness in the best possible way for you, even your doctor’s advice needs to be taken with a grain of salt and a deep knowledge of what is right for you, in a long-term sense. Listening to your intuition is confidence boosting, I promise. We are all doing our best, even if the whole world makes you feel like a scab on a wound stuck on the back of society, that is not our fault, and it is not forever! Nothing is worse than being stuck in the negative side of emotions, and on top of that, also feeling guilty for your own disordered thoughts.
Dear spoonies, you are doing the best you can. Please, please, try to take some comfort in the fact that there are people out there who know how hard you’re working, how every single day is a massive achievement, and how determined you really are underneath the tears, the desperation, and the bad habits that will not be dealt with right now.
You don’t have to think positive all the time. You can be loved anyway, no matter what side of the emotional spectrum you are currently leaning towards. You are still worth just as much when you are sad as when you are happy, so please don’t feel like just because you are depressed, you are worthless. Depression is a part of this. A study from 2008 at Northwestern University shows how pain actually changes our brains, and it takes some time to adjust to that change and figure out how to work around what you have been given. We are all different, there is no formula for everyone to achieve optimum happiness, and anyone that insists there is might not be as brilliant as they appear.
CHRONIC PAIN HARMS THE BRAIN
In a new study, investigators at the Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger other pain-related symptoms.
Someone who tells you that it is possible to be chronically ill your whole life without dealing with bouts of depression, obviously hasn’t suffered any major trauma in their life, either that or they are in some deep denial. Whatever the reason for their skewed logic, don’t listen to that crap. Illness can be traumatizing, but you are safe in thinking your thoughts, no one has dominion over what you feel, you are in charge, you are allowed to experience the ups and the downs in life without censorship. Just in case you don’t have a safe place to be yourself in all of your disease’s ups and down, I am always honored to listen and encourage. No one should ever have to do this alone. Chronic illness is an adventure best enjoyed surrounded by those who understand and commend your quiet everyday courage just in getting up each morning to a body that does not behave and a life that is more stressful than most. I admire each and every one of you, even if we haven’t met yet, I know you’re trying and I’m rooting for you.
Beautiful spoonies, you all fight so hard, and that makes me so proud to be a part of this wonderful and supportive community. Even if we’re depressed from time to time, we are still fighting to be here in a meaningful way, and very much deserving of finding that. ❤
Getting organized with chronic pain is no small task. But it is necessary on so many levels. One of the major secrets, the dirty untalked about secrets of the chronically ill, is how hard it can be to stay on top of even basic daily tasks no matter if you’re having a good pain day or a lousy one. Being disorganized can make it hard to take spontaneous advantage of the good moments, because we often feel overwhelmed and out of control all the time. Reducing mental clutter is the antidote, or at least part of it. Since I didn’t exactly start out organized, it’s been an uphill battle, one I probably wouldn’t have been prepared for if I hadn’t been fending off chronic pain and illness for years.
I have always had some pretty wicked ADHD that I hid throughout childhood with a high IQ and a love of books. I could still focus, sometimes really, really well, but only on things I deemed interesting and not too intimidating. As a kid that wasn’t such a big deal, it just meant I never progressed beyond my fifth grade abilities in math, and that I almost never turned my homework in. Somehow I still managed to be a merit scholar in high school and get mostly good grades. At the time, I used my then-resourceful brain to figure out how to navigate around the many daily challenges brought about by a complete lack of focus. I did so by setting up reminders for myself, making tons of lists, setting alarms on my phone, sticky notes on the walls, writing on the back of my hand long after it was considered socially acceptable, and generally learning how to fake that I had my shit together.
Unfortunately, my ADHD and forgetfulness have only been getting worse as I age. And then, lucky me, chronic pain and brain fog got added to the mix just over three years ago. Even worse, the IQ that I used to rely on seems to belong to some other person I barely recognize now; my brain feels walled off from me by layer after layer of cotton. Every now and again I get a glimpse of the old me, the smarter me, but it happens less and less.
Eventually, it got to a point where I couldn’t stand by, watching my brain wither in front of me. For the longest time, I was finding myself frustrated to the point of tears, often multiple times a day. Not from pain usually or even frustration about how long I had been in pain, but instead from how hard it was to remember even basic things. It was an adventure, a frustrating one, trying to keep a thought in my head long enough that I could find a pen and notebook and jot it down. I love lists, but all of them summed up, spanning several different notebooks, often scattered about the house and used by other people… it was all starting to drive me insane, not to mention take up too much space and time. I was losing very important information like appointment times, phone numbers I needed, receipts, everything was getting lost!
The definition of insanity is doing the same thing over and over again, so I decided to stop crying about my frustration and start trying to make changes. I downloaded about a dozen different To-Do List apps, all free, all promising me increased productivity and less mayhem. The first few I tried just made me angry. No way to reorganize the list, clunky slow programs, things that worked on the tablet but not the PC and the other way around, no way to keep crossed off items visible, no way to make different lists or different subheadings within each list. I was just wasting more time, and getting more frustrated. Keeping digital lists seemed like it was not going to work for me. Then I started using ToDoist, and for the first time I had some hope for an organized brain, and a few more glimmers of the old me!
Oh so many notebooks have been saved from my scribbling and constant list-making by this app! I downloaded it specifically to keep track of each online earnings website I am a member of. It has made the whole experience of making money online manageable instead of the complete mess it would otherwise be. Under the website names, I list each task I do that gives me a confirmation number to keep track of, and I keep my earnings up to date on each website. I also keep track of how many times I have cashed out on each website, what referral programs they each offer, what requirements there are such as cut-offs for cashing in, and the date of pay out if they only do so once a month, as well as due dates for canceling trial memberships.
With my newly downloaded app in hand, I started transferring my piles of written notes and ideas into organized sets of lists with subheadings and due dates where appropriate. It took a while, but I finally got all of the most important info about my life into the app and I am so proud of myself! I use it multiple times a day because it syncs across my tablet, phone, and laptop. It saves itself every time you enter a new line. A major bonus to me is that you can share projects with friends or invite them to help you finish a list, which is perfect for the at-home business I’m starting with a good friend in the beginning of 2015. Consistency is usually a problem with me, especially with the ADHD, but once I see a benefit, it’s hard to go back to a less efficient way of doing things. Right now I’m using the ToDoist app constantly on all my devices while I brainstorm, when I think of needed groceries, and to keep an organized, up-to-date list of medical information, in addition to a current list of my online earning activities.
I really have been striving this month more than ever before to be as organized as possible, and ToDoist helps me because it makes keeping track of my whole life so automatic and easy. Using ToDoist to record everything has allowed me to let go of the nagging thoughts that were occupying my brain so I have more room for the bigger stuff that really matters. Sold!
In general, I feel much more in control now that I am using ToDoist instead of keeping four or more different notebooks with me all the time and still not being able to find that one thing I need. Plus there are keyboard shortcuts to help improve productivity with the app even more. Love!!! I am still going through all my really old paper lists, like pages of handwritten records of what seeds I have saved for my veggie garden, and pulling information I need out of them to put into the app. This whole process has been the second best thing to replacing my broken, useless brain with a new, improved, cleaner, less anxious one. Going back through those old lists I can see all the things that I have accomplished in the last year, despite all the brain fog and frustration, and I am not feeling as hard on myself as I was before I saw all of that progress on paper.
Another nice feature of ToDoist that keeps me organized is that I can add due dates to each thing, and then I can easily see what out of all my various projects is due today, this week, and later on this month. Once I cross something off, it stays on the list, just in a lighter shade, until I delete it purposefully. That is perfect for me, sometimes I need to see all the steps I have taken previously in order to figure out a project. Having due dates for posts I’m writing, like this one, has helped me focus first on what needs to get done each day instead of floundering for hours, wondering what I should be doing. I’m considering that alone a huge victory because my brain fog often will not let me remember something long enough to even find a pen to write it down. Sometimes I used to spend hours looking for something I completely forgot to write down in the first place. This is much, much, much better!
Plus it’s free!
Here’s the official website:
And the Google Play store link:
I don’t mind failure, I relish in it, honestly. Without failure there would be no success, no learning and no growth.
However, just because failure doesn’t scare me, the thought of having to go through a lengthy process like applying for disability more than once is unbelievably daunting now that I am dealing with several chronic illnesses. And since I have the focus of a golden retriever puppy on a walk…
What was I saying? Oh yeah, since I completely lack all concentration whatsoever, I have had to develop some strategies for getting around my deficit. It has been about keeping it simple, being less self-conscious of my mistakes, and looking for positive reinforcement in the smallest of victories.
That was just a list of stuff, so here are some examples: If I want to paint tomorrow, I know I can’t expect to complete a piece start to finish in one day. I have to pare down tasks into steps, or pick smaller goals now, like just sketching my idea out one day and then doing a couple coats of gesso the second day. When something turns out not quite right when I do finally get around to painting on the third day, or maybe the fourth or fifth, I just try to focus on the process more instead of the final result. Even if it turns out looking more like a muddy field than a work of art, if I can use that canvas as a learning tool for teaching myself a new technique (or how not to use a new technique), then I go ahead count it as a victory, whereas before I would have gotten mad at myself.
I think one of the most valuable things that being chronically ill has taught me is how to view failure as success. I have become very good at being my own inner cheerleader (see, I’m doing it right now!). There is always a silver lining, and there always has to be. Every time I find one, I win and Chronic Pain loses. It might not even seem like much at the time that I find the little shiny piece of gold in all the shit, but it is everything when I look back.
This year was the year of perspective and organizing my thoughts, and one of the results is that I finally decided I am not weak. I have been through too much and stayed true to myself for too long to be weak. I might be writing this in a jumbled mess of words that will hardly make sense when I go back and try to fix it up into some semblance of English tomorrow morning over coffee, but I am writing, not wallowing. I’m changing my story by choosing to find the victory in the very small. So that later I can look back and see happiness.