#coping with PEM

[compassionmattersmost]

Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional…

[mrs-snape5984]

“There is no other love, it's only yours…”

“You're all I want, all I love…” (“You’re all I want” by Cigarettes after Sex)

Yesterday I had a really rough day. It didn’t just feel like one of my regular “PEM-Crash-Days” (PEM = post-exertional malaise = the worsening of symptoms after crossing the boundaries of my condition, due to my disease ME/CFS). The whole day was also coated in a thick layer of sadness and grief…an emotional turmoil, which I could only barely endure. Well…mixing these feelings with another wave of fever and pain, seasoned with the incapacity of tolerating screen time, adding the suffocating sensation of loneliness….et voilà! The perfect recipe for a day in hell was created! 🙄

In order to cope with my emotions, I found myself drowning in my fantasies of teenage Severus and my undeniably self-inserted OC Jules…rewriting one of their short fictional scenes. Again, Severus was tormented by his own insecurities, getting carried away in self-loathing. I don’t know, how many times I’ve already written scenes like these. Jules encourages Severus to stay resilient, praising him for all those traits, which he only identifies as his flaws and weaknesses. But for Jules, there’s so much beauty, so much strength in his imperfections. She’s making his blemishes look like the most loveable attributes of Severus’ personality with her passionate speech.

When I wrote this little scene, I recognised something: I already knew, that I’m identifying myself a lot with Severus…but Jules’ words of encouragement and consolation to her beloved friend Sevy…well, they’re are also things, I would crave to hear for myself (how pathetic, huh?!). But since I’m struggling immensely with the acceptance of my own insecurities and fears, I’m not able to reassure myself of my own worth. It’s just not on the table for me!

So…I’ll just keep on telling Severus in my stories, that he deserves nothing less than the whole world…and that Jules will always try to make him feel loved and cared for. She will never stop to compare his flaws with her own weaknesses by explaining to him, how perfectly they’re matching. Jules will never grow tired to assure Severus, that his cynicism is the perfect complement to her sense of sarcasm. For the Slytherin girl, it's a clear sign for Sevy’s extremely high intellect, which is also something, that she adores about her friend. In Jules’ eyes, his bitterness mirrors a form of hypersensitivity, a characteristic, which she knows so well from herself. That’s why she’s acting so empathetically with Severus, whenever he’s suffering with his life…and Jules is convinced, that sharing those feelings will make them less unbearable! The girl even praises Severus’ stubbornness by telling him, that she’s enjoying every good and intelligent argument with him to clear the air between them. All together, Severus’ imperfections are pure perfection to the hopelessly devoted (and obviously love-struck 😅) girl.

I’m aware of the overdramatic nature and the unnecessary fluffiness of my short stories, but that’s the reason, why I’m writing them for my eyes only. It’s my form of a coping mechanism…the only way of allowing myself some kind of self-assurance and comfort…through Severus!

Some time ago, I found an artist here on tumblr, who made me fall head over heels for her tender style of drawing my beloved dungeon bat. Especially an artwork of her interpretation of the younger Snape made my heart ache with longing for him, so of course, I just had to commission @pssherri for an illustration of Severus and my OC Jules in their teenage years.

Sonja, you did an amazing job with this project and I can’t express, how grateful I am for your kindness and the dedication to your profession! It was a pleasure to cooperate with you on this idea of mine and I hope, you’ll be open to work on more of my requests some day. Thank you for everything, my dear!

🖤Severus & Julia🖤

🖤Sevy & Jules🖤

[unfilteredrealities]

I realised I had a hypnic headache this morning at 2am bcs it felt almost like a migraine but not completely and it’s kinda gone now but still lingering.

Apparently this type of headache wakes you up between 1 and 3am which??? Damn. Woke me up at 2am gg and I might know the trigger. Right before I woke up I was deep in REM phase and was still dreaming but the headache was like nope and force woke me up. Then I realised oh yeah I need to pee and I need to put my phone to charge bcs I forgot to do that before I fell asleep.

I am a bit worried tho. I feel sick body wise and I’m worried that I somehow got infected with coroni :/ Bcs it’s not sudden symptoms but day to day I feel a bit worse and now idk if it’s that or just me/cfs or a pem crash 😩

One more day and then it’s finally weekend! Today I am not counting anymore, today already happened in my mind 😂 (a way how I cope and make myself believe the weekend is closer than it actually is)

Fingers crossed that I survive work today and it’s not going to cause me a crash.

[slateblueearthbelow]

Post-exertional malaise, or PEM, is the defining trait of ME/CFS and a common feature of long COVID. It is often portrayed as an extreme form of fatigue, but it is more correctly understood as a physiological state in which all existing symptoms burn more fiercely and new ones ignite. Beyond fatigue, people who get PEM might also feel intense radiant pain, an inflammatory burning feeling, or gastrointestinal and cognitive problems: “You feel poisoned, flu-ish, concussed,” Misko said. And where fatigue usually sets in right after exertion, PEM might strike hours or days later, and with disproportionate ferocity. Even gentle physical or mental effort might lay people out for days, weeks, months. Visiting a doctor can precipitate a crash, and so can filling out applications for disability benefits—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility: Most people experience the desperation of being unable to move only in nightmares, Dujardin told me. “PEM is like that, but much more painful.”

It's the annihilation of possibility.

[crackednailsandsplitends]

10 Self-Care Tips for Managing Chronic Illness During Spring

10 Self-Care Tips for Managing Chronic Illness During Spring

Spring is a beautiful season of renewal and rejuvenation, but for those with chronic illnesses like Chronic Fatigue Syndrome (MECFS), chronic pain, or fibromyalgia, the changing season can bring its own set of challenges. The shift in weather, allergens in the air, and fluctuating temperatures can often exacerbate symptoms and make it harder to manage daily life. However, with the right self-care strategies in place, you can navigate the spring season with more ease and grace. Below I have written 10 self-care tips to help you manage chronic illness during spring:

1. Listen to Your Body

One of the most important self-care practices for managing chronic illness is to listen to your body. Pay close attention to how you are feeling each day and adjust your activities and self-care routines accordingly. Pacing should be practised to ensure avoiding relapse/PEM crash. If you need to rest, then rest. If you feel up to some gentle movement, try some restorative yoga or a short walk outdoors. By tuning in to your body's signals, you can better manage your symptoms and prevent flare-ups.

2. Create a Daily Routine

Establishing a daily routine can provide structure and stability, which is essential for managing chronic illness. Plan out your day with a balance of rest, activities, and self-care practices. Include regular meal times, hydration breaks, medication reminders, and relaxation periods throughout the day. Having a routine can help reduce stress and ensure that you are taking care of your physical and mental well-being.

3. Practice Gentle Movement

Incorporating gentle movement into your daily routine can help improve circulation, flexibility, and overall well-being. Consider trying gentle yoga, or gentle stretching exercises to keep your body moving and reduce stiffness. Spring is a great time to take your practice outdoors and enjoy the fresh air and sunshine while moving your body mindfully.

4. Connect with Nature

Spending time in nature can have a healing effect on both the body and mind. Take advantage of the spring season by going for short walks in a park, sitting outside and soaking up some sunlight, or simply opening your windows to let in fresh air. Connecting with nature can help reduce stress, improve mood, and boost your overall sense of well-being.

5. Prioritise Sleep

Quality sleep is essential for managing chronic illness and maintaining overall health. Create a restful sleep environment by keeping your bedroom cool, dark, and quiet. Establish a calming bedtime routine that signals to your body that it's time to wind down. Avoid screens and stimulating activities before bed, and consider relaxation techniques like deep breathing or meditation to promote restful sleep.

6. Practice Mindfulness and Meditation

Mindfulness and meditation are powerful tools for managing chronic illness and reducing stress. Take a few minutes each day to sit quietly, focus on your breath, and cultivate a sense of calm and presence. Mindfulness can help you cope with pain, anxiety, and other symptoms of chronic illness, while meditation can improve your mental clarity and emotional well-being.

7. Stay Hydrated and Nourished

Proper hydration and nutrition are key components of self-care for managing chronic illness. Drink plenty of water throughout the day to stay hydrated and support your body's natural detoxification processes. Eat a balanced diet rich in fruits, vegetables, lean proteins, and whole grains to provide your body with the nutrients it needs to function optimally.

8. Set Realistic Goals

When living with a chronic illness, it's important to set realistic goals and expectations for yourself. Break larger tasks into smaller, manageable steps, and prioritise the most important activities. Be gentle with yourself and recognise that it's okay to ask for help or take breaks when needed. Celebrate your accomplishments, no matter how small, and practice self-compassion along the way.

9. Stay Connected with Supportive People

Living with a chronic illness can feel isolating at times, but you are not alone. Stay connected with supportive friends, family members, or online communities who understand what you are going through. Share your experiences, lean on others for support, and offer your own support in return. Surround yourself with people who lift you up and make you feel valued and understood.

10. Practice Gratitude

Practising gratitude can help shift your focus from what you lack to what you have, fostering a sense of positivity and resilience. Take a few moments each day to reflect on the things you are grateful for, whether it's a supportive loved one, a beautiful sunrise, or a moment of peace and quiet. Cultivate a gratitude practice through journaling, meditation, or simply expressing thanks for the small joys in life.

Final Thoughts

Managing a chronic illness during the spring season requires a thoughtful and holistic approach to self-care. Take the time to appreciate the beauty of the season and enjoy the colourful flowers, fresh air, and the longer daylight hours.

About me

I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.

[whitepolaris]

Eastern Illinois University

by Troy Taylor

One of the most famous school spirits in Illinois is undoubtedly the phantom who haunts a women's dormitory at Eastern Illinois University in Charleston: Pemberton Hall, filled with tradition and tales of ghosts.

Pem, as its residents call it, was the first college building in Illinois to provide housing for women on campus. It may also be the state's first college dorm to be haunted, considering the hundreds of strange events that have supposedly taken place there for almost a century.

The tales began after something terrible happened to a resident of Pemberton Hall on a bitterly cold night in January 1916. A young woman who had been unable to sleep decided to go to the fourth-floor music room and play the piano. It was very late, and she hoped playing soft music would help her relax.

The story goes that a janitor who worked on campus somehow managed to enter the women's hall that night and discovered the girl alone in the music room. Her back was turned to the open doorway, and she was lost in her thoughts as she played. Before she realized what was happening, the man grabbed her and pummeled her with fists. He then tore away her nightgown and raped and beat her, leaving her dead before vanishing into the cold winter's night.

Still breathing, the young woman managed to drag herself to the stairs. After crawling down the steps, she pulled her battered body along the hallways, feebly scratching on doors and trying to awaken someone to help her. Finally, she made it to a counselor's door and managed to wake her. When the counselor opened her door, she found the victim in a pool of blood, her body bruised, bleeding, and now lifeless.

A Counselor's Unending Pain

As the years have passed, residents of Pemberton Hall have heard echoes of this tragic event time and time again: dragging sounds heard near the stairs that lead to the upper floor and the sound of scratching on doors and walls. Most disconcerting are the bloody footprints that have appeared in the corridor, only to vanish moments later. Many believe the ghost of the murdered young woman has returned. But if she has, she doesn't roam this building along.

The counselor who discovered the murdered girl was named Mary Hawkins. A young woman herself, she was barely older than the students she had been hired to assist. She was very attractive, with long blond hair and a bright disposition that made her a favorite among the residents of Pemberton Hall.

After the murder, Mary was devastated. Students told of seeing her pacing the hallways all night, tormented by horrible visions and guilt. Unable to cope with her depression and the accompanying nightmares, Mary was institutionalized. She later committed suicide.

Shortly after her death, residents started to report strange occurrences in Pemberton Hall-events attributed to Mary's ghost. And they do so to this day. Perhaps Mary's spirit is unable to rest after losing one of the women in her care, and she still roams the hall to protect the residents from harm. Her ghost is said to glide through the rooms locking and unlocking doors, turning off radios and televisions, and tending to other matters.

Alumna Amy Van Lear lived in Pemberton Hall for several years, and has since recounted many occurrences that students attributed to Mary. While Amy never came face to face with Mary, she did have a few disconcerting experiences. One involved the lights on the fourth floor of the building, where the music room was located and where the attack on the young woman took place. Even through the floor is now locked and off-limits to residents, Amy and a number of other former students have reported seeing windows open and close and the lights turn on and off, all without any logical explanation.

A former resident tells of a string of strange incidents that happened when she lived at the dorm in the fall of 1952. She says the girls were being awakened at all hours by banging on the doors and from knocks that seemed to be coming from inside the walls. No cause was ever determined, but most students just assumed Mary was trying to make her presence known.

Rearranged Furniture, Locked Doors

Throughout the 1960s and 1970s, residents reported hearing the sounds of whispers in Pemberton, especially on the fourth floor, and seeing apparitions on the stairwell. These figures appeared very briefly and then vanished.

A student who lived in the building in 1976 recalled the problems that the resident advisors had with the furniture in one of the lounges:

An RA walked into the room one morning and discovered the furniture had been moved around. She went to find someone to help her put it back in place; but when she and another RA returned, they found everything had been restored to order. Even stranger, the same thing continued to happen, with the furniture sometimes found overturned. The RAs learned to leave the lounge the way they found it, knowing the furniture would somehow be put back where it belonged. Could Mary, with her hall-monitor impulses, have had a hand in it?

Former resident Patty O'Neill told me of an encounter she had with Mary in the spring of 1981. After studying late in one of the lounges one night, she went back to her room to sleep. Her roommate was already in bed, so to keep from waking her, she just pulled the door closed instead of locking it. (The old door was slightly wider than the frame, and the only way to lock it as to slam it firmly in place.)

Patty climbed into bed and drifted off. A short time later, she suddenly awakened and realized that the room was freezing cold. As she reached for her blankets, she was shocked to see a woman in a long white gown standing at the end of her bed. The woman remained there for several seconds before turning and walking toward the door.

"She opened the door and started to leave. Then, with one hand on the knob, she turned and looked back at me for several seconds," said Patty. "She then left, closing the door behind her."

Apparently Patty's room wasn't the only one visited that night. As the apparition departed the room, she had locked the door. Strangely, a number of other students who distinctly recalled leaving their doors open found them locked the next morning. It was if someone had been checking on them and was worried about their safety.

In recent years, most of the reports of weird happenings have centered on Pemberton Hall's fourth floor. Even though no one ever goes up there, residents have heard footsteps pacing overhead and the strains of faint piano music filtering down. Darkened and closed off, the floor remains empty save for old furniture and the dust of decades. Oh, and a piano is stored in the old music room. Is this where the music comes from? If so, one has to wonder whether the player is of our world or the next.

[compassionmattersmost]

Coping with ME/CFS in the Aftermath of Hurricane Helene: On-the-Spot Practices for Pacing and Recovery

Rest now, breath by breath,Let each moment cradle you—And nourish your soul. As we recover from the aftermath of Hurricane Helene here in Florida, many of us are left not only dealing with physical damage and power outages but also with the internal toll such intense stress can take. For those of us living with chronic fatigue syndrome (ME/CFS), the impact can be particularly difficult, as our…

[pemmalaysia]

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[notebeans-galaxy]

it is so fucking disheartening to see other trans people living their lives, getting the surgeries they want and the clothes they want and presenting how they want to and passing and moving on with their lives. and i'm just sitting here, rotting.

i feel like i'm dying. not... physically, at least i don't think i am, but with all my chronic illnesses and the absolute mystery that is my physical condition, how would i even know? but no, i feel like i'm dying mentally. socially. i have nothing going on. i don't start college until september, i have no current plans to get top surgery or bottom surgery because i can't afford the post-surgical recovery costs and i don't have a support system to take care of me. i can't move out, i can't get away from my mother. i have no car, i live in an area that's extremely difficult to travel using public transport, and i can't walk places regularly because of chronic illness. i'm effectively unemployable until i finish college. and i'm stuck watching, helpless, as my friends move forward with their lives and leave me behind.

the only thing i have going for me is that I started HRT over a year ago, and i still have enough to get me through the next few months. but i can't even muster up the energy to call the doctor's office to schedule my long overdue blood testing & follow up, because i know just getting to the office is a pain; i have to walk for an hour (PEM makes this Suck for the next few weeks) and spend 4 hours on public transportation in total. or i have to deal with my mother. i don't even want to be in the same building as her, much less stuck in the car with her for 3 hours (i doubt she'll let me drive it to DC by myself). when i run out, i'm fucked.

yeah, i should be happy for other people that they're not suffering the way i am. and like, i'm glad they're not, but that doesn't make my life being so stagnant any easier to tolerate. it doesn't make me less jealous of their freedom, of their ability to make their own choices, of the stability and happiness they're afforded by having enough money or being able bodied or having a support system or having loving parents who didn't traumatize the shit out of them. it doesn't make it any easier to put up with being disrespected and discarded like i'm worthless by everyone in my life. it doesn't make it any easier to cope with the fact that i don't have any of that. it doesn't make me feel less trapped.

[anumberofhobbies]

and Tracey ain't kiddin ... here, have a couple references from the CDC, the U. S. Centers for Disease Control and Prevention,

Overview ME/CFS is a biological illness that affects many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain, and many other symptoms. People with ME/CFS may not look sick but can't do their normal activities. ME/CFS may get worse after they do any activity -- physical or mental. This symptom is called post-exertional malaise (PEM). After they exert themselves, they may need to stay in bed for an extended time. About 1 in 4 people with ME/CFS are confined to bed at some point in their illness. Did you know?‎ It's estimated that up to 3.3 million people in the United States suffer from ME/CFS. More than 9 in 10 people with ME/CFS have not been diagnosed by a doctor. ME/CFS costs the U.S. economy about $18 to $51 billion annually in medical costs and lost income. It is difficult to diagnose because there is no specific test for ME/CFS. One reason that people with ME/CFS have not been diagnosed may be limited access to healthcare. Another reason may be a lack of healthcare providers who know about ME/CFS and how to recognize it. Anyone can get ME/CFS. It doesn't matter what age, gender or ethnicity they are. However, some groups are more affected than others.

Symptoms to potentially address Post-exertion malaise PEM symptoms can be severe. They can begin shortly after the exertion or several days later. Typically, symptoms get worse 12 to 48 hours after the activity or exposure. Symptoms can last for days or even weeks. PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance activity and rest to avoid PEM flare-ups. To do this, people with ME/CFS need to find their individual limits for mental and physical activity. Then, they need to plan activity and rest to stay within those limits. Some patients and doctors refer to staying within these limits as staying within the "energy envelope." People with ME/CFS have different limits for physical or mental activity, compared to others without the disease. Keeping activity and symptom diaries may help them find their personal limits, especially early in their illness. Being mindful of personal limits can help people with ME/CFS cope with their illness. It can help them feel like they are managing the illness, rather than the illness controlling them. People living with ME/CFS may find that everyday activities may be enough to cause a relapse or "crash". Activities such as buying groceries, brushing their teeth, or interacting with others may bring on PEM. It's hard to avoid these situations. But people with ME/CFS can learn to monitor their activities throughout the day. Then, they can place limits on what they do if needed. When having a good day, people with ME/CFS may be tempted to try and "push." This involves increasing activity beyond what the person would normally attempt, often to make up for lost time. However, this can then lead to a "crash", or worsening of ME/CFS symptoms. The cycle can then repeat itself after people start recovering from the crash. Rehabilitation specialists or exercise physiologists who understand ME/CFS may help people with ME/CFS adjust to living with the disease. Finding ways to make activities easier may be helpful. Some examples may include sitting while doing the laundry or showering, taking frequent breaks, and dividing large tasks into smaller steps. Some patients find wearing heart rate monitors helps them track how hard their body is working, preventing PEM. Patients who have learned to listen to their bodies might be able to increase their activity level. However, ME/CFS is unpredictable. PEM symptoms may not start right after exercise. This makes it important to tailor each treatment plan to the individual, with their input. Exercise is not a cure for ME/CFS. Vigorous aerobic exercise can benefit people with many chronic illnesses. But people with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate, as described above.

[michellemiyagi]

Nature Walks for Health

Nature Walks for Health

In addition to journaling and meditation, nature walks, physical activity plus mindful breathing practices help keep you healthy. These are simple, effective, healthy habits that most anyone can maintain in their busy lives. Since I had Covid at the end of February 2020, I’ve had a post-viral syndrome called long covid or post-acute sequelae SARS-CoV-2 infection (PASC). This has negatively…

[judithwesterfield]

PEM's and PEM - How I try to cope

PEM’s and PEM – How I try to cope

Peggy loves to use multiple exclamation marks when she writes. Probably to her chagrin, I edit them out. I refer to it as PEM’s or “Peggy Exclamation Marks”.

One of the reasons I retired was after seeing clients I was exhausted for days.  Because I felt fine when I was in session I largely ignored crashing afterwards.  Besides I was used to feeling exhausted socializing, exercising or even taking…

[martinvogt]

Long-COVID and its impact on my daily life

With the end of the year approaching, I am reflecting back to a year which was not what I imagined. 

I had none of the severe symptoms associated to COVIS-19 when I tested positive back in November 2020. I took a test after feeling a bit under the weather, headache and sudden loss of smell. After a few days of illness, after the isolation, I thought I was on the mend. I was wrong.

In mid January I developed new symptoms. From one day to the other, my energy and concentration levels were completely down. Walking outside for just 10 minutes was one of the hardest things to do, looking at a computer screen was (and still is) energy-draining. I became very unwell with even stronger headache, cognitive disorders, muscle pain, digestive problems to mention only a few of them. Optimistic as I was and with all the new years resolution set in stone, I figured this would only be temporary, next week, next month, in two/three months this would all be over and I would be my energetic self again.

Normally I am a very strategic and analytical thinker. But I was unable to manage complex information, to follow conversations and I was forgetting words. I had problems doing simple tasks and basic logic problems. I would normally do these easily. I was tired continuously. There were many days when I slept for 12 hours, yet when I woke up, I felt exhausted like I hadn’t slept at all. My body felt heavy. Every muscle ached. Alongside the fatigue, I developed other issues with sleep. Although I was sleeping for excessively long periods, I would have night terrors and wake up with my body paralysed. Sleeping remains an issue for me. My symptoms left me struggling and I could not return to work. It was really hard because I was in the first wave of sufferers and the impact was not understood.

For weeks, I went through cycles of feeling better, then getting worse again. As well as brain fog, memory loss, debilitating headaches and fatigue, I developed many other symptoms including heart palpitations: I could be sitting down watching television or going for a walk and suddenly I’d feel my heart racing.

A common frustration is that some medical doctors dismiss our complaints as psychological. My symptoms were initially put down to depression by my GP. Feeling like my health concerns were being dismissed, I insisted for a “Long-COVID consultation”, who’s clinic director diagnosed me with “Post- COVID-19 syndrome” and referred me to a long-COVID rehabilitation program.

Trying to stay positive

If 2021 was the number I was aiming for this year, my last few month in numbers reads a little differently. 382 (52 weeks) is the number of days I’ve had symptoms for; 22 is the number of Long-COVID symptoms I’ve had; 12 is the number of pills I’ve been taken; 8 is the number of doctors who gaslit me; 5 is the number of hospital/clinics I’ve visited.

If this seems like a story of loss, that’s certainly in there. What did I lose, alongside copious amounts of my hair? My identity as young, fit, and able. My coping mechanisms; achieving, exercising. The ability to stand up, talk or walk (especially up stairs). The ability to eat normally, drink coffee or alcohol, tolerate heat, cold, changes in temperature or any stress whatsoever. But this is also a story of gain, growth and gratitude. What did I gain, alongside multiple duzend and a strong prescription list of pills? An exciting array of letters to put to my name (not the acronyms your mother wants you to get): PEM, ME/CFS. Some less catchy words too – new daily persistent headache, Post-Exertional Malaise, chronic fatigue, syndrome, quips aside, I gained a profound sense of what I want my life to look like: what I value, what my red lines are. What I will give and what I won’t. 

Debilitating illness can be the ultimate lesson in slowing down, in mindfulness – some times a slowly sipped cup of tea really is the highlight of your day. I have gained a deep understanding of the mind-body-spirit connection and a resonant understanding of trauma, what it is, what it does when it remains unprocessed. I am immensely grateful for so many things; for a family that has quite literally picked me up off the floor, for loving friends, family and supportive colleagues. For being able to advocate for myself, for being able to digest medical papers. For having the access to world leading medical specialists who have listened to me and supported me throughout this. I am particularly grateful for the ability to recognise the limits of conventional Western medicine which, whilst it excels at life saving surgery, at trauma resolution, at cutting edge scientific advances, falls so short with regards to many chronic conditions.

The Breakthrough

But my biggest breakthrough has been in marrying modern science with ancient wisdom, forming a personalised and holistic approach to health that encompasses mind, body, spirit and environment.

I had acupuncture, Physio & Ergo therapy weekly. I have taken the time to test and understand the effect of Traditional Chinese Medicine and psychotherapy weekly. I have taken the time to test and understand my unique combinations of environmental toxins, deficiencies and excesses and I try to practice breath-work and meditation daily.

There's a African proverb I carry with me: "Health is a crown worn by the well, seen only by the sick". When you lose your health, the thing that is most precious, you see what a gift it is to be able to eat the food you want, not having to hide how you feel at work, be present with your family and friends.

I've found a way to still have gratitude for my life, and use this experience as a vehicle to grow. To become the person I was always meant to be. When I experience a pain flare, I don't freak out. I re-regulate myself with the tools that I've learned throughout this journey and cultivate positive emotions that keep my morale up.

Fast-forward to August 2021 and I am working with very reduced pensum. On my days off I sleep for 9-10 hours just to catch up. I still have vivid, terrifying dreams. Before COVID-19, I’d only ever needed 7 hours sleep each night to feel refreshed.

Now, more than a year on from my initial infection, I am slowly recovering – although I am very far from being back to my ‘previous’ lifestyle. In the past few weeks, I feel fresh and sharp again, however my body rebels from time to time for no reason. I was finally able to return to run. I can only manage very short periods, but hey, here I go! I am learning to manage living with long-COVID. This means healthy eating, pacing myself, and incorporating lifestyle tips.

The hardest part of this journey is accepting that I now have an invisibly disability with up and downs.

Let’s try to stay positive and I hope that everyone stays healthy and safe during these sometimes, lonely and isolated days.

Please take care of yourselves and leave a comment if you life.

Martin Vogt

✭Explore. Dream. Discover.✭

www.martinvogt.ch

[crackednailsandsplitends]

Coping with Chronic Illness: Discovering Joy in Daily Rituals

The Power of Daily Rituals

Navigating through life with a chronic illness is daunting. The never-ending struggle to complete even the most basic of tasks can leave one feeling defeated and in despair. But amidst this turmoil, I have found solace and empowerment in my daily self-care routine rituals.

Each morning, after savouring my morning cup of tea, I take the time to adorn myself with jewellery, and make-up and spritz on a mist of perfume. Even though I won't be leaving the house, these seemingly insignificant actions hold great significance for me. And, it is important to me. It's not about impressing anyone else, but rather about making myself feel good and put together.

The simple act of applying makeup and putting on some jewellery helps me feel more confident and ready to face the day, even if it's just from the comfort of my own home. Plus, it's a small way to express my style and creativity, which will brighten my mood and boost my overall well-being.

These small self-care rituals serve as reminders that despite my chronic illness, I am still in control and capable of finding moments of joy in my life.

Below I explain why:

Finding Joy in Simple Pleasures

For me, putting on makeup each day is not just about enhancing my appearance; it is a sacred ritual that provides comfort and control when my health refuses to cooperate. The act of carefully applying each product brings a sense of calm and routine to my day. Wearing jewellery adds not only external sparkle but also an internal gleam that reminds me of my strength and resilience.

The Power of Scent and Sparkle

Spraying the scent of a favourite perfume fills me with happiness and creates an aura of positivity around me - an intimate experience that enlightens my senses and even triggers happy memories. And, the scent stays with me throughout the day.

Enhancing Social and Emotional Well-being

Amidst the isolating nature of living with chronic illness, these small rituals also play a crucial role in enhancing my social and emotional well-being. The act of engaging in these routines, even in the confines of my home, allows me to feel more connected to the outside world. The subtle boost in confidence and the sense of normalcy gained from these rituals facilitate more positive social interactions and help me maintain a sense of connection with others, thereby alleviating feelings of loneliness and isolation that often accompany chronic illness.

These practices play a crucial role in helping me cope with the demands of the daily life of living with a Chronic illness and Chronic pain. Without them, I find my mental health inevitably takes a toll.

The small pleasures in life

Acknowledging Bad Days

Of course, there are days (many) when fatigue and debilitating pain take over completely or post-exertional malaise (PEM) hits– times when I find myself unable to indulge even these little pleasures. But no matter how poor my health gets on those overwhelming days; I strive hard not to let it entirely steal the moments of normality and joy these routines provide me.

These small acts of self-care may seem trivial to some, but for me, they are essential in maintaining a sense of peace in an otherwise abnormal existence.

It is my way of reclaiming some semblance of "normal" in a life that is far from ordinary.

Final thoughts

Chronic illness may have drastically altered my life, but through embracing simple joys hidden within daily routines, I can reclaim some control and find fragments of happiness amidst all the adversity. These rituals act as subtle reminders that even in the face of immense challenges, there is still beauty and joy to be found in everyday life.

They serve as subtle reminders that I can still find fragments of happiness. And, they are great for my self-esteem as well as my emotional health.

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Living with CFS/ME overview (your mileage may vary):

Doctors: can’t live with ‘em, can’t live without ‘em. Do your own research if you can, if you can tell something is bad for you don’t do it, and if your doctor doesn’t believe anything is wrong with you get a new one (if at all possible.) Don’t expect perfect understanding, do deal with your feelings outside of appointments and not during them, do have clear requests as much as possible. Do expect competence: not dismissiveness, not ignoring what you say, not failing to do relevant lab tests. Write stuff down, before and after. If possible, have someone else come with you to appointments (especially if you have serious brain fog issues and/or are the sort of person doctors tend to not take seriously.) With emails, some doctors will only answer one question per email, so if you have five questions that means writing five separate emails. Don’t be afraid to be pushy, as long as you’re pushing for something the doctor can actually give you.

Getting stuff done. You can’t. At least, not as much. Do you need help with: housework, shopping, childcare, filing for benefits? Personal hygiene? Figure out how to get what you can and learn to live without what you can’t. Delegate as much as possible. Whatever weird feels you have about accepting help, figure out how to set them aside and accept help anyways.

Other people: in my experience most people will take your lead. If you tell them you’re not sure what’s going on or aren’t sure what to do about it, you will get more suggestions and advice than you know what to do with. If you want sympathy, you might get that (or you might get unwanted advice — sometimes saying explicitly what you want helps.) If you talk about your illness like a totally routine thing that you’ve totally got, the advice and general “oh shit I want to help but don’t know how” goes away. In my experience.

On that note: it’s OK and a good idea to tell people explicitly what you want from them. “If we’re going on vacation together I need a place to stay with no stairs.” “What would really help is if someone could run groceries once a week for me or pay for delivery.” “I could really use help from someone who knows how to read scientific articles.” “I could really use some patience and understanding about sometimes having to cancel plans at the last minute.” “I need a therapist who’s worked with people with chronic illness before.” Whatever.

Fuck exercise. Or rather: stretchy gentle exercise can be fine/good, strength exercises that you can do without raising your heart rate might be fine; anything that raises your heart rate is much higher risk. Walking is appropriate exercise for people with CFS, just be careful to not overdo it. (I am not joking.) Personally, I do a lot of yoga, but I’m not exactly doing sun salutations. It’s yin yoga and restorative yoga and a small amount of strength exercises. And...pranayama. Exercise for people with CFS/ME doesn’t look the same way as it does for people without it. That thing where it’s good for healthy people to take the stairs and this and that? Not for you. Be lazy. Do things the lowest energy way possible.

PEM and pacing: it’s all about the activity intolerance. Sometimes you run out of steam right away, sometimes it happens two days later. If your body says “stop” it means it; if it gives you a green light it might be lying. If you’re getting some days that feel almost normal and some days when sitting upright is a Herculean task, chances are if you do a lot less and try to do approximately the same amount of stuff each day, you’ll figure out what your sustainable “energy envelope” is. Or how many spoons you have, if you prefer that metaphor. And, most likely, you’ll end up with way fewer “can’t sit up” days.

Breaking things up means you can do more with less consequence. Eg: wash dishes until the first hint of feeling tired, take a break and sit or lie down for five minutes, then keep going. Pushing past the point you feel tired is risky.

In particular, in some situations you may be excited or stressed enough to not notice when you’re tired, so sometimes it makes sense to plan breaks rather than relying on the self awareness approach. When I play games with my partner, for instance, we set a timer for half an hour.

Adaptive equipment and behaviors: I use a folding stool in my everyday life and a wheelchair (provided by the airport) if I have to travel by plane. At one point I figured out how to wash dishes in a plastic basin sitting down (although, paper plates are an option too.) My partner and I leave a couple cooking pots on the stove and the things I use most often on the counter, since digging up a pot from the floor level cabinet that’s full of pots is much more tiring than the pot already being where I want it. In general, stuff above shoulder level or below waist level is significantly harder to get to. If showering standing is tiring, get a shower chair. Some grocery stores have motor scooters that can be used by disabled customers (that means you.) Grabbers can help with things like when a sock falls on the floor and you don’t want to have to bend to pick it up. If your walking is very limited, but you have someone who can push you around, a rolling walker with a seat may be more affordable than a wheelchair.

How to get your doctor to prescribe you a wheelchair so that your insurance will cover it: your doctor is worried you’ll lose mobility due to walking less, so if you actually want a wheelchair so that you can get outside and do more stuff for longer, focus on that. Ditto for a scooter. I’ve found writing a comprehensive list of what I can’t do or can only do with great difficulty, and handing the list to my doctor, is significantly more effective for getting taken seriously than mentioning one or two limitations and expecting the doctor to be able to extrapolate. Make it easy for them to do what you want them to. (Sorry if this sounds manipulative. My experience is that if you come in assuming your doctor will just give you what you need as long as you’re up front and trust them, you’re going to be sadly disappointed. I was not like this before I got CFS and spent months practically begging doctors to take me seriously.)

Taking naps or non-sleeping lying-down rests during the day might help. Yoga nidra, progressive muscular relaxation, or some sort of guided visualization can help with relaxation. You can also just lie there and let your mind wander, but if your mind tends to wander to sad or worrying sorts of places then you should give it something to do. One note of caution: if you’re near your limit you might feel more tired after a rest, that doesn’t mean the rest was bad for you but it does mean you gave the tired a chance to catch up with you. I do think the benefit comes as much from doing it regularly over time as from any one rest by itself though. (I can’t do anything on time, so for me “regularly” means “to within about two hours, most of the time.”)

On that note: your feelings matter. Stress and extreme emotions can take as much out of you as grocery shopping or a two hour zoom call. So...therapy if possible, self help books, doing things that help you feel calm and put things in perspective. You might need new coping strategies if your old ones take too much energy.

Some people with CFS have more energy/activity tolerance/spoons in the morning and less late in the day, others like me are the opposite. I couldn’t find my pattern when my energy levels were swinging wildly from day to day, but eventually when I got things more leveled off I figured it out. If this is the case for you, planning hard stuff for your best time of day and light stuff for your worst times is a good idea. For instance, I shower in the evenings rather than the mornings.

Once you’ve gotten your symptoms to more or less level off, if you get to that point, you can try very, very gradually expanding your activity levels. When I say gradually, I mean gradually, and be ready to go back to less activity any time things get worse again.

Thing is: if you don’t use all your energy, it does seem to sort of build up a “reserve” so you can bounce back from expected or unexpected stressors (illness, travel, etc.) But when your reserve runs out, it takes much longer to recover. So, there’s something to be said for not going at 100%.

In particular, don’t try to go back to 100% too quickly after one of those stressors, like a cold or (sigh, speaking from experience) a cross-country move, even if you feel like you can. Where 100% means using all of your spoons/energy envelope, not functioning at 100% of what a healthy person can do.

Plan ahead of time how you’re going to handle special occasions like holidays, a visiting friend or relative, or travel. “If the movie theater is too loud I will have to leave” etc. When I got married, I planned when and where I was going to take rests, and planned absolutely nothing for the days after. (Interestingly: I did better afterwards than I thought I would, even though I got major brain fog during the reception. Apparently the stress before the wedding was messing me up more than all the activity and socializing at the wedding itself.) We went on our honeymoon a full month later — even a relatively restful trip is still more tiring for me than staying home.

Get advice from multiple sources. This list is aimed at, well, basically myself and anyone with similar symptoms. I’m not addressing pain because that’s not one of my symptoms, but if it’s one of yours you should absolutely get advice from people who experience pain. Likewise, I’m not housebound so I’ve got limited advice there. I don’t have kids, so I don’t have much in the way of parenting advice, and I’m not working so I don’t have “how to handle a job when you have CFS” advice. Oh, and I’m in the United States, what you can expect the government, schools, businesses etc to do for you can vary considerably by country.

A lot of this comes from this website and backed up by my own experience. They have lots of easy to read articles and success stories, and email-based “classes” (think structured support group, not like college class) on living with CFS/ME or fibromyalgia. They don’t get money from promoting supplements or whatever, which is a thing I look for as a sign of integrity. (Not that supplements can’t help, but if someone is getting money from saying they do it’s harder to trust if they’re being fully honest.) There’s also groups on FB and I’m sure other places that are well suited for asking questions and getting advice. There’s books, both on the disease itself and possible treatments (mostly highly speculative and/or alternative) like Living Well with Chronic Fatigue Syndrome and Fibromyalgia, and on the “how do I live like this?” side of things, like How To Be Sick. Point is: you don’t have to go it alone.

Postscript: recovery. The odds that you will get somewhat better are pretty good. The odds that you will make a full recovery, given the current knowledge about CFS/ME, are low. I know that doesn’t feel good if you’re newly diagnosed (side note: you don’t need officiant diagnosis to start assuming that you’ve probably got CFS and looking for resources, I didn’t, official diagnosis can take a while.) I know when you’re new to this, all you want is to return to normal. (And you might; some people do.) Here’s the thing though: even if you don’t get back to normal, it’s not always going to feel this bad. What feels bad isn’t mostly the state you’re in, it’s mostly change: improvement feels good, getting worse feels bad. If you level off or get a bit better (super likely) and start comparing your current state to your low point, rather than when before you got sick, you’ll start to feel better again. It’s the adjustment period that’s rough, more than the illness itself.

It’s grief, it’s loss: grieving the life you had and the future you hoped for, and the way people respond to that is similar in many ways to how people respond to losing a loved one. Therapy might help, religious guidance if applicable to you might help (if not, perhaps consider this a good time for a deep dive into philosophy, or some form of creative self-expression like drawing or writing poetry); whatever you do, be aware that this is a huge thing to have to come face to face with, and it’s normal to struggle with it. (And: it’s not always going to feel this bad.)

It’s possible to have CFS/ME, and have a good life. It’s possible to have CFS/ME and have many sources of joy and delight and excitement and satisfaction and connection. It’s possible to have CFS/ME and have a deep sense of purpose and meaning, even if your old sources of purpose and meaning are no longer available. It’s possible to live well.

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ME/CFS Awareness

Myalgic Encephalomyelitis, that’s what the abbreviation M.E. stands for, has many other names. One is CFS (chronic fatigue syndrome), another SEID (systemic exertion intollerance disorder). Since the late 1960s it’s classified by the WHO as a neurological disorder.

Main symptom, and what distinguishes ME from many other debilitating illnesses, is post exertional neuroimmune exhaustion (PENE, also called PEM). That means: worsening of symptoms of ME after doing even small tasks, like, brushing your teeth, taking the dog for a walk or sitting up. This worsening of symptoms is delayed, that is, it sets in later than the actual task. Sometimes a few hours later, sometimes days. And stays from days to weeks and even months.

Most patients have flu like symptoms all the time, with sore throat, backache, stomach cramps, muscle weakness, brain fog and feeling feverish.

For many, this means they are unable to read, listen to music, watch videos, etc. Imagine having the flu so bad, that you can’t even watch cartoons. That’s M.E.

The illness is characterized by better and worse days. Some people can���t get out of bed and have to lay in darkness in absolute noise isolation on their bad days. Sometimes those periods last years. If they neverthess attempt to get up they get what’s called a flare up. Their immune system acts up resulting in severe muscle pain, lymph node pain and migraine like headaches. And more.

It is important to note, that while there is up to now no single cause identified (the most promising research points in the direction of a partly inherited autoimmune dysfunction that is activated by going through common infectious deseases like Eppstein Barr), no serious, up to date study points to it being a psychological issue or treatable via psychotherapy/psychiatry. To distinguish between ME and depression is easy, ME patients do not lose incentive. They want to get up and work - and do so! To the point, that most crash regularly. “Crash” describing what leads to the above mentioned flare up, doing too much so their symptoms worsen again.

Many doctors don’t know about this illness. And some who have heard of it believe, that it is a mental health issue. Their believe is often based on the infamous PACE study of some UK psychiatrists that was discovered to be a huge fraud years ago. As with the idea of autism being connected to vaccines (also based on fraudulent research), it’s hard to get rid of those rumours once they are started.

But it means, that ME patients are still treated with behaviour therapy and activation therapy. Resulting in renewed flare ups and some times long term worsening of their symptoms. While talking to a therapist can, in some cases, help to cope with this disabling illness, it can’t cure it. And going out to weekly appointments can be too much for many patients, making their illness actually worse than better. When those patients stop seeing their therapist because it didn’t help or made their symptoms worse, the medical system is used to treat these dropouts as success of their method (as in ”Didn’t need to come to therapy any more. Was cured.”). Others get their disability benefits revoked because they refuse to do “therapy” that further damages their body. They then have to go on living with this condition, in isolation and pain, without any financial support. Treating this illness as a mental health issue and refusing to treat the physical symptoms (sleep disturbance, POTS, inflammation) with accurate medication is one reason the suicide rate in ME patients is about 21%

Another 21% die of heart failure. All ME patients have a greatly reduced life expectancy and greatly increased risk to die from cancer. The life expectancy of ME patients with cancer is 20 years less than that of “healthy” cancer patients.

Through this Covid pandemic people realized what it means having to stay inside when you want to go out. Abled people know now why it isn’t always fun to stay in bed when you want to go to the gym instead. Or meet with friends. ME/CFS patients have to live like this for years. Some all their life.

There is currently no causal treatment (although clinical trials with immune modulators and hemodialysis are ongoing, e.g. at Charite, Berlin) because funding for ME research is notoriously low. But we need more knowledge. We need to convince young scientists, that this is a rewarding field of study. ME is not a rare illness. More wide spread than breast cancer in women (data from Germany estimates for ME 300.000 cases). Finding a cure could be worth millions for big pharma. But there is so much to do to get there. And many prejudices to correct.

Spread the word! End this scandal!

Edit:

Sources for this article include:

pubmed - Beyond ME/CFS: Redefining an illness

CDC on ME/CFS

NIH working group on ME/CFS

Euromene - European research network for ME

Bayrischer Rundfunk (German) on a possible blood test for ME/CFS from Stanford University

Deutsche Gesellschaft für ME/CFS (German)

fatigatio (German) Bundesverband Chronisches Erschöpfungssyndrom