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.
I found this article which I had written about on Facebook before I had a blog. The first time I read about this girl’s story I felt so alone, so overwhelmed and out of control and consumed by pain that I cried the entire time I was reading it. I didn’t yet realize how many of us were going through the same thing, or how many friends who truly get what chronic pain means that I would meet along the way. I just knew the desperation, anger, and denial that I was piled under. Fortunately, times have changed, or at least my perspective has. I can still really sympathize with this girl, and understand where she is coming from, and I am still incredibly grateful to her for writing her story at a time when I felt hopelessly isolated. This may have been the first time that I realized if more people were less afraid to speak out about chronic pain, we might be treated like human beings, eventually.
My Story: Looking for a New Doctor
National Pain Report
May 26th, 2014 by Kitty Taylor
I’ve had chronic pain as far back as I can remember. It got unbearable a few years ago after a serious injury. My body won’t forget the pain and it feels fresh as day one without medication.
I recently moved to Colorado from Nevada after being with the same doctor for many years. Now I’m having a hard time finding a new doctor willing to prescribe the medication I’ve been taking. I’ve found plenty of clinics that say they specialize in pain management, when in reality they are rehab clinics. Their sole purpose is to wean you off narcotics and put you on highly addicting medication, such as Suboxone or methadone. Some clinics are treating pain with Suboxone long term. That was not the intended use.
Then there are pain clinics, usually the spine centers, that only do injections and don’t prescribe drugs. I wish they would distinguish in their business category what they’re really about.
The first clinic I thought would be helpful turned out to be a Suboxone clinic. On my second appointment there they told me outright that I wouldn’t be continuing on the same medication and that I would be going on Suboxone. If I didn’t agree that, I was told they’d cut my doses so low I couldn’t handle it anymore. So I canceled my next appointment with them.
Drugs like methadone and Suboxone (which may or may not help the pain) are just as dangerous and the addictions to them are intense. The withdrawals are unreal. Coming off the medication I’m on now would be painful, but having to come off one of those could cause months, not just days, of withdrawal and pain.
Not only that, but imagine if you couldn’t get your next dose of methadone or Suboxone, you could end up in a coma! Any doctor that says there aren’t side effects and the withdrawals aren’t bad is lying.
It’s been four months since my last appointment with my helpful doctor and I’m still looking for a new one. One clinic I had a referral to, the doctor refused to accept me as a patient. It’s taking so long to find a doctor and I’ve got to find one quick! There are so few listed and so few that prescribe narcotics or are honest about what they practice. If you are rehab clinic you should not be advertising that you manage pain.
I’ve certainly been made to feel like a drug seeker and nothing more since I’ve moved. My last doctor never made me feel that way. He was caring and compassionate from day one. The only complaint I have about the visits there was that the DEA had them scared to prescribe medications that I had been on for a long time. My medicine and schedules were altered based on word from the DEA, not what my doctor felt was right for me and not what was working for me.
My daily function is greatly decreased since my medications were screwed with and it’s getting worse. First they took away Soma and it was painful trying to find another muscle relaxer. Even the one I’m on now sucks, but it’s better than nothing. Some of them I think were causing more muscle spasms and cramps. It was so bad I looked like I was having a seizure.
Then they couldn’t prescribe more than four oxycodone pills a day when I was on six. They couldn’t even prescribe Demerol anymore because the DEA and the county were having so many problems with it. The hospitals stopped keeping it and the pharmacies stopped ordering it because of theft and robberies!
And this was my response, a year ago:
“This is so much like my story. The way she talks about having to deal with “pain clinics” who only push methadone, or who only push Lyrica and Savella, or who only do injections. None of them have the ability to actually treat acute flare ups. I know from personal experience that even when a procedure at a pain clinic goes wrong and they have caused you intense and unrelenting pain, they do not offer any help, just tell you to calm down, because you’re scaring other patients, and “if it’s really that bad” to go to the emergency room. Pain clinics are a gimmick. A glimmer of hope that turns out to be bullshit when you get up close, every time.
I can’t do cortisone injections, I can’t take most antidepressants, nor steroids, nor do I care to, I am taking Lyrica and two different muscle relaxers at the same time for spasms and I also take all the usual Vitamin D, B-12, magnesium, zinc, rosehips, tart cherry extract, etc, that seem to help maybe? Who knows. The only time I have ever gotten any relief from this pain is after six hours waiting in agony at an Emergency Room, watching junkies and fakers get treated with more dignity than you, because you refused the little cup full of oxycodone and valium (I had already taken my personal comfortable limit of oxy while waiting in the ER, and I told them so, and I don’t do well with valium, it causes panic attacks and it’s written so in my charts if they had payed attention). One time I was told rudely to leave the ER, and then billed $600+ for the pleasure of being treated like human garbage by a very bitchy ER doctor after waiting many hours to be seen. Twice I received actual pain relief that lasted maybe five hours and was the only relief from the hell of fibro that I have had in two years. I haven’t been to the ER in over a year, but I think about how the ER is always full of people who feel better than me. The ER is a very, very, VERY last resort at this point, however.
I’m not even functioning anymore, I’ve been in way too much pain for way too long. I’m just trying to get to a place where I have enough moments in a day to take care of myself properly. I’m not even close to that level on my current treatments. Most days I can’t brush my hair or take a shower. Most days I spend two hours doing a task that should take fifteen minutes. Most days I am overwhelmed and unable to advocate for myself.
The point she makes that I think cannot be overstated is that chronic pain patients don’t abuse medications. Then we wouldn’t have them when we need them. The pain is real and we would never want to not have the ability to treat it.
We are just as scared of finally finding the right drug (can it please be a non-opiate, non-psychoactive drug?) that makes the pain bearable only to have it taken away again, as we are terrified of the pain we are in continuing unchecked. And we are scared of addiction, too. And scared for our organs. And scared for the changes in us caused by taking pain medication. We’ve weighed all that. The pain warrants the medication, or we wouldn’t take it.
The pain is already changing us, rewiring our brains, making us shells of the people we were before, and turning our bodies against us. If there were something better, we would certainly take that instead.
I understand her panic and her logic and I really feel for her.”
Phew, so that’s me a year ago. I don’t regret writing any of that, because at that time it was all true from where I was standing. It’s important to note that I was extremely depressed, and had been disappointed and disillusioned so many times. I had a primary care doctor who believed I was faking, no way of seeking relief except the ER, and I very much didn’t understand what was happening to me. At the time, open therapy was doing very little for me. I spent more time staring at my psychologist in total confusion than I did processing or talking things through. She would ask me questions like “what kinds of self-care routines are you doing on a regular basis?” and I would look at her like she had grown a second head, and she would push, “you must be able to think of one self-care activity, I don’t care how small it is.” I was still confused. Self-care? As in, my needs had to take precedent over others before I was at the point of throwing massive temper tantrums, crying uncontrollably in public and at work, and having ten panic attacks in one day? How was I supposed to even start? What did it all mean? Was this lady crazy? I was supposed to get better, not spend more time wallowing in “my needs”.
That’s my thinking a year ago. The level of brain fog I was enveloped in at that time is pretty evident, and there isn’t a lot of built in logic to my ranting, but I wasn’t even aware yet that my cognitive abilities had been taking a nosedive over the past two years. I knew I had Fibromyalgia, but I didn’t know much about it or much about what my life would look like in a year. To be honest, when I typed my response to that writer on National Pain Report, I didn’t even know if I’d be here in a year. Two girls with Ehler-Danlos Syndrome responded to my posted response on Facebook; one is a dear friend now but was someone I had just met at the time, and another I was too self-involved to reach out to in return. Currently, I am haunted that I didn’t reach back, more than I am bothered by anything that I did write. Reading through this outpouring of my own overly raw emotions made me wince, but seeing how I ignored another spoonie’s attempt to connect gave me actual regret. Both girls have EDS and encouraged me to push forward to a diagnosis.
I still don’t have the diagnosis, but I am treating my joints with much more care and attention and I am seeking physical strength instead of allowing fear of injury to mandate every activity. I also do finally understand what self-care is and have a long, long list of ways to recognize and put disordered thinking in perspective, but I am still learning more every single day. I would no longer characterize my life as hellish. Some days are indeed horrible, but I have good days too, and I am more prone to seize them now than a year ago.
I feel gratitude and empowerment when I take care of myself these days, not selfish guilt, but it took reframing my thoughts, repeatedly. Of course I still forget to make myself a top priority sometimes. There are always improvements to be made, but I am confident (another new development) that I will continue to make necessary changes and seek out information that helps me cope. In the mean time I am trying to find joy in small wonders. Any little victory is cause for celebration. Today, I’m happy that I have made progress since my diagnosis. Visible, written down, real progress. All the hard work has been overwhelming at times, it has even felt like I have slid backwards more than I have been able to put one foot in front of the other and keep climbing, but in one short year, the small changes I have made have taken me a long way from not knowing if I wanted to be here in a year, to planning for the next five, ten, twenty years of my life. I am even starting a business with a close friend, something I thought was ripped out of my grasp by illness which has actually become much more possible because of the life adjustments I have made to accommodate the chronic pain that dogs my every move.
It just proves that accepting and processing what illness means for me personally, minus the guilty nagging voice in the back of my head, has made all the difference. I think others around me may be frustrated by how little I can seem to accomplish in a certain amount of time, but I now realize that this isn’t their journey. It’s my journey, at my pace, and that’s healthier than continuing to constantly feel like a failure for struggling to keep up with everyone around me. I don’t have a magic finish line that I can get to and be “recovered”. The best I can do is the best I can do, end of story. I will work with what I’ve been given, and I will be grateful for what I can do on any given day. Sometimes that means just breathing in and out for hours, nothing else, and sometimes it means charging at life like I don’t know what pain and illness even are.