Myalgic Encephalomyelitis

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    Why NOT Doing Something Can Take So Much Energy With Chronic Illness

    Before I became ill with ME/CFS at age 21, I had never considered how much energy we use not doing things. We all know that our daily activities require certain amounts of energy, even for healthy people. We all have different amounts of “baseline” energy, that energy that we start the day with and is available to us to use however we wish to accomplish the jobs we need to get done. We know that our baseline energy can be affected by things like a late night getting to bed, a bad night’s sleep, not drinking enough water, or not getting enough nutrients in our food. And we all have a choice in how we spend our energy, what we use it to accomplish. In fact, there’s even a metaphor chronically ill people use to explain it called “spoon theory.” Spoon theory is the idea that we start the day with a certain amount of “spoons” available to us, and that every daily activity requires differing amounts of spoons to complete. Getting dressed might take two spoons, washing your hair takes three spoons, etc. The kicker is that when you are chronically ill, you start the day with a lot fewer spoons than a healthy person, and so have to pick and choose very carefully what you spend them on! So we all know that doing things uses energy. What might not be as well known is that sometimes not doing things takes energy! What do I mean? I mean the energy that we use to control our actions, to restrain ourselves from behaving in a certain way, or reacting in a certain way. For example, you work in customer service and somebody has a go at you for no reason. You may need to restrain yourself from shouting back at them, or maybe after they’ve gone you need to control an urge to cry about what’s just happened. Or, your children are laughing and playing and generally making a lot of noise! You may need to stop yourself from shouting at them to quiet down or telling them to leave you alone. Or, your partner has tidied something up, but they haven’t done it just the way you’d like it. You may need to control the urge to redo it yourself risking upsetting them. There are so many of these little instances that happen throughout the day, and they typically use so little energy that you may not even notice it. But when living with chronic illness, even these small drains of energy take a lot out of us. And we can find ourselves turning into grumpy, weepy, uncontrolled messes simply because we don’t have the energy to control those emotions or keep them in their proper place. Small annoyances become huge, quiet noises feel like fireworks going off right next to us; minor upsets become a cause for inconsolable crying. My husband came upstairs the other day to find me in tears, and when he asked me why, all I could respond with was because I didn’t have the energy to not cry! So don’t be too hard on yourself on those days when you’re an extra bit grumpy, a little more intolerant, or less in control of your emotions. Some days all our energy is being used to survive, and while we recognize that we definitely don’t have enough left over to do things, we may not realize that we don’t even have enough to spare to not do things either.

    Paige Wyant

    24 Signs You Have Chronic Fatigue and Aren't 'Just Tired'

    Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. If you struggle with chronic fatigue, you’ve likely been in a situation where you’re trying to express how you feel and a healthy person responds, “Yeah, I’m a bit tired today, too. Mondays, right?” The problem with this response, and the reason it can be frustrating to hear, is because chronic fatigue is so much more than just feeling “tired.” Chronic fatigue can be a symptom of a wide variety of chronic illnesses, and is different than chronic fatigue syndrome/myalgic encephalomyelitis – a disease with its own particular set of symptoms. Chronic fatigue may involve feeling sleepy, but the weariness and exhaustion is generally more severe and debilitating than the tiredness a healthy person may feel after not getting enough sleep one night. Chronic fatigue can also give rise to other symptoms, such as pain, muscle tremors, sensitivity to stimuli or brain fog. This can make it difficult and at times impossible to go about your daily routine – whether that means going to work, cooking dinner or even taking a shower. To better understand the everyday effects of chronic fatigue, we asked our Mighty community to share signs that indicate they are experiencing chronic fatigue, and aren’t “just tired.” Although others typically have good intentions when they try to empathize, a lack of awareness about the differences between fatigue and tiredness can actually leave chronic warriors feeling isolated and misunderstood. Share this with your friends and loved ones to help explain what chronic fatigue is really like, and check with a doctor for more insight if these symptoms look familiar to you. Here’s what the community shared with us: 1. “ It. Never. Ends. You go to bed tired and wake up tired. You feel like your bones are made of lead and your head of granite. And no matter how much sleep you get, it never goes away.” – Cat L. 2. “ When your body feels like you’ve just run a marathon when in reality you just woke up from sleeping eight-plus hours.” – Marie A. 3. “ When I start watching reruns of shows I’ve seen countless times before. My brain can’t handle any new information when I’m at my worst so I fall back on my favorite shows where it doesn’t matter if I space out or fall asleep for a bit.” – Kelly W. 4. “ It often feels like the day before you get sick for me. Body aches, major fatigue, etc. When I’m tired, I can still push through and function. Fatigue completely knocks me out.” – Kristen E. 5. “ Having to constantly lean against something or have something to prop against or I’ll just keel over! Not enough energy to keep [my] eyes open or to even talk/type. Giving my life up to work and spending any ‘free’ time recovering.” – Mandy W. 6. “‘Coma naps.’ I call them that because my intention was just to rest for 15 minutes to 30 minutes. However, eyes shut and into a deep sleep I have gone. That turns into three to six hours… and it only feels like a five-minute nap. Because when I wake up, I’m still as exhausted as when I laid to rest from the first time and my body decided to go into a deep ‘coma sleep’ out of my control.” – Dee’Di C. 7. “ When I start to feel almost feverish. Where I am exhausted and my body starts to ache and I feel kind of cold and hot. If I don’t lie down and sleep I will become so exhausted I can’t get up, literally.” – Ariel B. 8. “ I don’t have the energy to raise my head, let alone my arms (or fingers). My eyes burn. The thought of a shower makes me want to run in fear. I don’t dress that day (or cook). I’d rather be hungry than use the energy to clean/cook.” – Anjuli H. 9. “ When I get confused over the smallest things. When my speech becomes slurred. When I start losing grip and dropping everything. When my limbs feel like they are heavy and like they have 10-ton weights attached. When I can’t wake up in the morning. When I can’t stand in the shower or lift my arms to wash my hair. When no matter how much sleep I get, every part of me is exhausted. Tiredness is so easy to cure. Have a nap or a good night’s sleep and you wake refreshed and eager to take on a brand new day. Fatigue is never-ending and you can’t get away from it.” – Shireen H. 10. “ When you are tired it’s hard to get going, when it’s fatigue it’s downright painful to do anything. You can down coffee till your heart feels like it’s going to burst but you’re still going to move in slow motion.” – Niki D. 11. “ My muscles begin to twitch and my body begins to ache. If I don’t get in the bed, those muscles that were twitching begin to spasm. In addition to the spasms and body soreness, I begin to go very pale with my face being the first to lose color.” – Leeana C. 12. “ When I can’t speak. The words are in my head but I can’t make my mouth say anything. Also dropping things and the tight-chested feeling caused by cramping type pains in my diaphragm.” – Sarah S. 13. “ I start not being able to think things through. I’ll think of something simple I need to do, like going to more than one store, and my mind sort of shuts down, as if I can’t see from here to there. I’ll also get that feeling of fish hooks in my skin with lead weights pulling me down. And I’ll start feeling like something is crawling on my skin but will go to scratch and nothing is there. I lose my coping skills buffer zone, emotionally, so something that yesterday I could have handled, today reduces me to tears.” – Corey H. 14. “ Sleep doesn’t refresh you. Even the little things cause a fight-or-flight response, even simple things you would normally enjoy doing. Being overwhelmed by everything, even fun things. A week feels like a day. Eating feels like too much work. You don’t feel like reality is anything more than a dream happening outside of your head. Cancelling plans is a relief instead of a disappointment.” – Sarah L. 15. “[I] g o to bed at 10 p.m. and if I don’t set an alarm I’ll wake up at 3 p.m. the next day and still feel tired, even if I’ve done nothing the day before.” – Nae W. 16. “ My brain feels like it’s shutting down. I can’t verbalize my thoughts, my neck can’t support the weight of my head and if I don’t lay down immediately, I will fall down.” – Shaun M. 17. “ Getting that super exhausted feeling that seems to emanate from the stomach area; it gets so bad that I’ll have to sit down just after walking across the house because it feels like it’s sapped all my energy.” – Bonnie P. 18. “ When I am about to crash it feels like a heavy pull. Starts at my chest then moves into the rest of my body until I cannot move or keep my eyes open. A severe fatigue episode is like being trapped in my body unable to move, unable to respond when anyone talks to me and I am doing everything I can to just keep breathing. To my family I look like I am sleeping but I am wide awake and trapped. My husband can now tell when I am in a fatigue because my breathing is so deep.” – Margaret S. 19. “ Family members have witnessed what happens when I have had too much stimulation from a visit or have done too much. I can be attempting to engage in conversation one minute and the next, my eyes glaze over and I disappear, I am no longer me. I never realized it was so visible of a change. These are the few folks who understand that I am truly sick.” – Barbara L.M. 20. “ When you have to have a five-minute pep talk to convince yourself to get up and go to the bathroom before you have an accident. Really. You are literally trying to convince yourself you aren’t as tired as you obviously are or that at least once you’re there you can rest without the danger of soiling yourself and having to shower, which is a whole new ordeal.” – Bin T. 21. “My body feels super sensitive, like I can feel every drop of water in the shower and if I hear a loud noise my vision gets brighter for a split second too.” – Kathryn R. 22. “ When you wake up and your whole body feels like you’ve been in a major car accident or someone has come along and beat you with a cricket bat in your sleep…” – Steve H. 23. “ Your entire body feels like there is cement running through your veins instead of blood.” – Donna-Jean I. 24. “ I always know when I try to get ready to go somewhere. If I completely exhaust myself trying to do my hair or makeup, I know it’s chronic fatigue. If I can get through getting ready and still have energy, I know it’s ‘just tired!’” – Jordan T.

    Living with myalgic encephalitis can be challenging. You don't have to do it alone. This is a safe space to talk to people who get it.
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    How do you feel emotionally when you hit that fatigue "wall?"

    <p>How do you feel emotionally when you hit that fatigue "wall?"</p>
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    Myalgic Encephalomyelitis Is More Than Just Chronic Fatigue

    I have myalgic encephalomyelitis, or ME. You’ll probably know it as chronic fatigue syndrome, the much easier to pronounce but more misunderstood and stigmatized name. Yes, I’ve tried most miracle multivitamins I’ve been recommended, I don’t pull all-nighters streaming Netflix every night (as much as I wish I could!), I have had blood tests testing for pretty much every condition you can think of, seen naturopaths, had countless tests including lumbar punctures, about 10 MRIs, tilt table tests, autonomic nervous system tests, about five echocardiograms, stress tests, holter monitors, a few ultrasounds, x-rays on my various aching joints, EEGs, all types of eye tests and numerous hospital stays with few answers. In my experiences, I have found my diagnosis to be one where I am brushed off as “lazy” or “unmotivated” or just “going through a bit of a teenager thing” (for six years…what a phase!). I am embarrassed to tell my condition to friends and usually just say I have dysautonomia “as well as some other stuff,” as explaining why I am unable to regulate my body temperature, sweat, have a resting heart rate of over 160 off medication and have dropping blood pressure to where I pass out is taken a lot more seriously than just “being a bit tired.” Plus, we learn about the autonomic nervous system in class, what a bonus! I have also found that when explaining my symptoms to doctors I am told it could be because of psychosomatic reasons or that I’m depressed. I’m referred to psychologists, who then discharge me saying I am not mentally ill and they have no reasons to continue seeing me. I’ve found that when discussing this with friends who have CFS/ME, they’ve found “it’s all in your head” to be a common answer given to young females. So what I’m trying to say in all of this is that chronic fatigue syndrome or myalgic encephalomyelitis (I’ve had the terms used interchangeably in my case) seems to be a diagnosis of exclusion. It is often the answer given when there are simply no other answers. It is also a difficult diagnosis to share with others as you fear you may not be taken seriously, be questioned further or be told that their best friend’s brother’s aunt’s second grade teacher was tired often too and found some magical cure – I do appreciate suggestions, it’s just sometimes a lot more complicated! I am tired. We all get tired. But chronic fatigue syndrome is so much more than that – it can involve muscle aches and pains (many are diagnosed with fibromyalgia as well), brain fog ( how does someone forget their last name?!), poor concentration, swollen lymph nodes, these mysterious sore throats, “crashing” bed-bound for long after doing any kind of physical activity (this can last weeks), headaches, light sensitivity, noise sensitivity, dizziness, nausea, sweating, loss of appetite and so many others! Chronic fatigue syndrome is often a diagnosis of exclusion. There is no current blood test or current diagnostic test for CFS. I know several people who have been misdiagnosed with it. There is every chance that someone with CFS might have something else! For me, having a diagnosis of chronic fatigue syndrome has felt the same of the 18 months I spent undiagnosed. Perhaps there is another reason I have had these symptoms for over a third of my life… or I might have some super rare condition that nobody has picked up on yet. CFS has never felt like a true answer for me. Chronic fatigue syndrome/myalgic encephalomyelitis affects everyone differently. Some are so mildly affected that they never receive a diagnosis and are able to do all of their daily tasks with little difficulty, but some (an estimated 25 percent) are housebound or bed bound for long periods of time. This can be decades. I am often scared to share my diagnosis, even with my chronically ill friends, as I worry they will just think I’m whining about being a bit tired! Chronic fatigue syndrome/myalgic encephalomyelitis/systemic exertion intolerance disease has been in my life for the last six years. I am not lazy! My symptoms are real! I’m not tired… OK, I am tired! But CFS is a lot more than that. I ask that you please learn more about CFS/ME and learn how much people’s lives can be affected by “just a little bit of fatigue.” We want to hear your story. Become a Mighty contributor here. Thinkstock photo via ValentinaPhotos.

    Being Tired With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Since being diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, “tired” has become one of my most commonly used words. It’s a word we all use. Everyone gets tired. Whether it’s at the end of a busy day or as you drag yourself out of bed early in the morning, we all experience it. But the more I use the word the more I realize that what I mean when I say it can be very different to what other people mean. For me it has almost become a code word, or shorthand, for the millions of other words I keep trapped in my mouth. It’s as much about what I am not saying as what I am saying. To me those five letters are so much more than an adjective. It’s the ache in my muscles that weighs down my body until it feels almost too bruised and heavy to move. It’s the sadness and guilt I feel when I have to cancel something I really wanted to do. “Tired” is the thing I see when I look in the mirror. It is the paleness of my skin and dark circles around my eyes. “Tired” is the darkness and weariness that sometimes creeps into my spirit, making me wonder how many more days like this I can take. When I say, “I’m tired,” I mean this day will be hard. I will ride the roller coaster of being happy one hour and sad the next because my emotional regulation has given up and gone home. My head will be filled with a fog so dense that forcing my brain to concentrate feels like a particular kind of torture. I will be irritable and say things I don’t mean; the words I want to say will get mislaid somewhere between my brain and my mouth. I will be endlessly frustrated with myself and my inability to “cope better,” when really I am frustrated with the direction my life has taken. “Tired” is the black hole I am being perpetually pulled into. The opponent I have to fight, who has a fondness for changing the rules of the game whenever they feel like it. It haunts my good days and my bad days. It is the monster I will sometimes let you catch a glimpse of, but will mostly keep hidden away. Some days I worry it is all I am and ever will be. But while “tired” is more than a word to me, I am also more than those six letters. I believe I have a value that comes not from what I do or how I feel, but from who I am. I have no less worth on the days I can’t get out of bed than on the days I can pretend all is well. I am a daughter, a sister, a friend and I am loved. I am creative, clever, empathetic, thoughtful and strong. I am so many other things before “tired.” There will be days when I will need reminding of that fact. I may be tired today, but I refuse to give up on the hope that tomorrow will be better. Maybe there will come a day when energy is no longer a distant memory. In the meantime, I still have dreams to chase. I’m not done yet. Follow this journey on Hope Whispers Today. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

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    What It Was Like to Get My First Infusion Treatment for M.E.

    It had been weeks of the worst flare I’d ever gone through and I was only getting worse. I could barely sit up for more than a few minutes at a time and the fatigue grew more and more each day. I’m used to feeling like death is knocking at my door, but this time was different and the desperation set in. I’d been reading research papers and anecdotes for years on IV therapy for my conditions and conditions I share many symptoms with. I regularly drink an electrolyte and salt powder mix with my water and that brings some relief on top of helping me stay hydrated, but there were no promises that a saline infusion would do anything at all during this flare. My PCP was out of the office so I couldn’t ask her to refer me to an infusion center in time, so I turned to the many infusion centers in my city. It was a shot in the dark. A $250 shot in the dark. I didn’t have the strength to leave my house and I was willing to pay extra for a nurse to come to my home and let me do the infusion from the comfort of my couch. It was better than the risk of worsening my flare-up while I was out in public with no assistance. I got a basic combo bag of saline, B-complex vitamins, B12, vitamin C, and zinc as it was listed as the more popular option for energy and immune system boosting and every other option was significantly more expensive. The nurse arrived on a morning I hadn’t had a lot of sleep and my symptoms were at their worst. The perfect position to truly tell how effective the treatment would be. She took my medical history down and informed me of how everything would work and what to look out for. She stuck me twice in one arm before having to move to the next (cursed tiny veins) and was the first medical provider to inform me that I needed smaller gauge needles after many a blown vein in my medical history. After I was hooked up and comfortable, she reminded me of the number to text her if I needed anything and went back to the van to give me my privacy. Aside from the IV needle in my arm (which was as uncomfortable as expected), I was pretty comfortable. I turned on some YouTube videos and waited. Within 10 or 15 minutes, I began to taste the saline, which I now know means that it’s working. To my surprise, I started to feel… good? It was a gradual buildup as the IV dripped, but I could feel the brain fog lifting and I had a clarity I hadn’t experienced in years. It was like the clouds had started to part to show the sun after weeks of overcast weather and heavy clouds. By the time the IV finished, I could feel the flare easing away. I still opted to nap for an hour afterward, but by the end of the day, I had prepared two meals, done some dishes, and put together a piece of furniture that had been delivered that day. It didn’t feel like gravity was trying to drag me down, my heart rate wasn’t beating out of my chest from the slightest movement, and my joints hurt significantly less. I felt hydrated as hell and ran to the bathroom a lot over the course of the day afterward, but I had energy. It’s been over 24 hours since the infusion and I can’t believe a bag of salt water and vitamins has given me a vitality I thought was long gone. I’m still ill and I feel it, but my body feels like it did before I got my M.E. diagnosis and I was put through physical therapy. I’d given up hope on treatment options that could work for me, but for the first time in forever, this experience has given me something to fight for.