chronic pain – Page 6 – SUNBEAM ACRES

How to Regulate Your Emotions: 10 Effective Strategies

January 7, 2025 pammunkholm

Though winter is a brittle beast she snows pure soul in flakes so deep.

-Angie Weiland- Crosby

Despite my greatest efforts there are times I react emotionally. People are difficult and life can be challenging. But this reaction takes a toll on the body, mind and spirit. Especially my chronic comrades.

Minimizing Emotional Reactivity

All of us can attempt to minimize the effect emotional reactivity has on us. I do this by engaging in one or more of the following ten activities. In this post I share with you my top ten ways to minimize emotional reactivity.

These can be done in any order and in your own way and timing.

Breathe. Sit with your feelings and just let them hunker down for the moment. Then breathe some more to allow the feelings to pass. The effort of holding back emotions we don’t want to experience is worse than actually sitting with the feeling itself.
Be curious about what you are feeling. Question it. Where is the feeling in my body? What does it feel like? Burning. Stabbing. Twinging. You can even question, why am I feeling this way? See what answers come up.
This is a hard one. Try to look at things with an outside perspective. Stay open minded and be humbly objective. Perhaps there is something you would do differently given that new perspective. Mentally talking this through with yourself can be quite constructive.
Count to 30 before responding. It gives a chance for the nervous system to calm. This way, there is not a sudden action that you will most definitely regret later. It is healthier to act than to react.
I like this one. Practice self compassion and remember that we are all human. Sometimes we get it right and other times we get it wrong. That is part of growth and development. I choose to be in the arena where my life is advancing. And part of being in that arena is winning and losing. We can’t always win.
If you have the opportunity (not always an option in the moment) journal your thoughts, feelings and intentions. This will assist you in weeding out the opinions of others. Bring it down to you and what is happening in your brain.
“Maybe things are going perfectly”. I have shared this favourite mantra of mine before. It is powerful if you are open enough to believe it. These words and the space they create help me see a positive in even the most dire of circumstances. Maybe this disaster needs to happen for something really important to work out.
Do not judge your feelings. Feelings are human. We all have them. It is what we do with them that determines who we are. Be honest with yourself to see more deeply into your emotions. Stand back and notice. Name the feeling or emotion if you can.
Trust the process. (I saw a meme that said: Does the process know we are trusting it? Hehe) This goes along with #6, maybe things are going perfectly. But in this one there is an added belief that your higher power/ life has got you. That this life is for you and eternal success is your inherent right.
Stay in your own energy. As I write this list and this post I am currently in a squabble with my landlord. I am getting a chance to practice this very list. Here is something I am learning to be truly important. When I act true to myself, I can stay out of emotional reactivity. That can be difficult to do around certain personality types. Some people have such a strong energy. It is vital to take time to look inward and find our own energy and act true to that. Bending to the energy of others takes us away from our truth. And into emotional reactivity.

What else would you add to this list? What helps you come down from emotionally charged situations? Add your answer in the comments.

Having emotions is human. They are a fuse box for our individual experience. When tripped they alert us to danger and help us see where we need better boundaries. It is important to notice your emotions.

The next step, that so many people skip, is crucial. Use your logical brain to decide which parts of the emotion fit the facts of the situation. Don’t allow the emotion to take control of the situation. Use that higher part of your brain to determine how you will respond. Emotions do not give us the right to treat others or ourselves poorly.

My Top Ten Ways to Regulate My Nervous System Once I’ve Been Triggered

If, like me, there are still times in your life where you are unsuccessful, don’t worry. Even if all these steps have failed, there is a way back. Here is my top ten list of how to regulate your nervous system once it has been overloaded.

Exercise. If it is an option for you, get moving. To have the greatest effect you will need to get your heart rate up and your sweat on. This is great for any type of detox that your body needs. Including stress.
Listen to music. Up- level by having a playlist on your music app that is for moments like this. Choose soothing songs that speak to you.
Cry! I used to avoid crying. I thought it was weak and embarrassing. But now I understand it is just another way that our body is supporting itself. Crying releases stress.
Cuddle a pet. Animals are so great at accepting us wherever we are. If you don’t have your own pet, go cuddle a friend’s. Animals are generally emotionally regulated (unless that is challenged by their human’s behaviour). So if you allow your energy to shift to theirs you will find yourself coming back to yourself.
Progressive muscle relaxation. If you haven’t heard of this you can google it. Many meditations that I follow use this as a tool. Essentially you tense a muscle group. Starting in your lower extremities and then moving to the top of your head. So starting with your feet. Tense. Hold for a few seconds and then release. Move up to your lower legs. Tense. Hold. Release. And so on. Connect to your body.
Speaking of meditations. This can look different for all of us. It can be sitting quietly and breathing. Praying to connect to your higher power. Or listening to a meditation app. I highly recommend Insight Timer if you are looking for one to try.
Spend time with friends who get it. Maybe that’s family or maybe you need to schedule a day with your besties. I hope you have someone in your life that can let you talk it out. And help you get to the bottom of your emotions. A paid professional is always an option too. I, personally, think that we all need a therapist.
Hug your person. There is something about holding one another heart to heart that provides a space for compassion and healing. Okay so this one isn’t my favourite. But it’s one I’m working on. I see the value of it.
Get enough sleep. This seems silly when there are so many things vying for our time. And likely, you are a grown adult that can go to bed whenever you want. But getting at least 8 hours of sleep at night will greatly improve your chances of recapturing emotional regulation. And a higher probability of keeping it in the future.
I have it here as #10 but it is actually my #1. Can you guess? Forest therapy! Even in the cold of Saskatchewan, there are days and ways to get some nature time in. Bundle up. Pick your spot. And enjoy what nature gives freely. Given enough time, you will regulate your nervous system with forest therapy. If you’d like to learn more, subscribe to the blog and watch for all I have coming in the spring. You can also contact me with any questions about forest therapy. Ask me about how to use it for all types of healing.

These have all worked for me in the past. Sometimes I need to try one or two. Take time to consider what works for you. Perhaps you will need to try a few before your emotions start to fizzle as well.

I mentioned that I would get to how sensory overload is different for my chronic comrades. When our emotions are running high we tend to go into sensory overload. Does this sound familiar to you when you’ve been emotionally triggered?

Unfortunate equation: chronic pain + too much stimuli = more pain. Have you ever been so overwhelmed by seemingly minimal inputs but you can’t explain it to anyone? Like: The lights are on. People are talking. The music is playing on the tv downstairs. My bra is on. I suddenly have too much hair. And my teeth feel weird. What is wrong with you people? Isn’t everyone else suffering from all of this stimuli?

Never fear. All is well. We have a list of ways to avoid being emotionally reactive. We also have a backup list of what to do if those don’t work.

It’s okay to be sensitive. That’s what happens when you have magic in your heart.

-dannys_moments_poetry

That’s it for this week my friends. Take care of yourselves.

Heartfelt Holidays: A Spoonie’s Joyful Celebration

December 24, 2024 pammunkholm

I have been posting my twelve days of Christmas according to a spoonie on my instagram page. For this late post on Christmas Eve I am sharing those posts here.

I looove stars. As a teenager, I would sit backwards on the seat of the car. With my back resting on the dash I could see the whole sky. When my boyfriend (now hubby) drove out on the highway. I wouldn’t do that now. But I still love getting out of the city and away from the lights to see the starlit sky. This eve marks the celebration of the birth of Jesus Christ. On this night we remember the star that heralded his birth. HE brings me more peace than all the other remedies combined. He is my High Priest of Good Things to Come. Whatever your faith. Whatever you celebrate, I with you the happiest of holidays.

What is the most important part of Christmas for you? Family? The meal? Gift giving? That is what we chronic comrades should focus on this year. The most important part for each of us, whatever that may be. We don’t get to take it all in and do it all the way we’d choose. But we can focus on one thing that is most important. Enjoy that with all your hearts.

Chronic comrades find ourselves explaining our choices often. Why we don’t work. Why we can’t try that exercise program. Why we can’t stand for long. You don’t have to give a fully prepared defense in response to every situation. When you have to decline an offer or invitation, often ‘No’ is all you have to say. Explanations are not mandatory.

I love Christmas movies. There’s so many new fun ones out there. But my favourites are the classics. White Christmas. Holiday Inn. Miracle on 34th Street. It’s a Wonderful Life. When I need a break from the chaos around me I will spend time in these heartwarming tales. We chronic comrades know that there are times we just have to rest. This can be terribly annoying when there are so many more fun things out there. And it seems like everyone else is out there enjoying themselves. You are not alone. There are others of us who just need to lay down and watch an old Christmas movie.

When I only eat the foods that don’t bother me, I have a very limited diet. My chronic comrades will understand. It can feel like we are missing out on comfort foods especially at this time of year. Find other things that bring you comfort. Like cozy sweaters! Or fuzzy blankets. Or the perfect smelling candle or diffuser blend. Or forest therapy! There are many things that can bring us comfort. Find yours.

This life presents us with different seasons of life. We can accept them and find peace or fight against them and find struggle. For my chronic comrades this is a season of rest. Not your season to impress. Your home and meal should look different from others’. So don’t compare to those in a different season. Use some of your movement time to get outside and breathe some fresh air for your forest therapy. But be careful in Saskatoon, I fell on the ice and now I am Humpty Dumpty. Waiting for someone to put me together again.

Music sets a mood. What mood do you want for your day? I have multiple Christmas playlists. A joyful Christmas. A playful Christmas. A traditional Christmas. Don’t say you aren’t a Christmas music person until you have tried more than Mariah and Justin. When you take time out to rest chronic comrades, put on something relaxing. It will help to settle any upset nerves. Enjoy your down time. Don’t sit there worrying about what isn’t getting done. I’ll share with you my favourite mantra for when things are going sideways. {{maybe things are going perfectly}} Maybe it doesn’t matter if we forgot to make the mashed potatoes. Or if the dog gets into the turkey. Or dinner is going to be two hours late. Sit down, choose some calming music and breathe.

Sing it with me and the gospel choir. Just go lie down. When your body needs something, listen to it. Take care of your body and it will take care of you. It’s like preparing for a marathon if you have multiple gatherings. Stay hydrated. Make sure and be well rested. Eat nourishing foods. And when your body says it’s time to stop. Listen! I think of big family dinners with my Grandma McDonald. She knew how to do it all. Perhaps it’s just my young mind not remembering correctly but I recall Grandma enjoying it all. She never sat down until it was all over and cleaned up. And she still had energy left to watch a show or sing a song. I would love to be the woman who can do it all. And still have energy left over. But I am not. So as a reminder to me and my chronic comrades. Just go lie down when your body needs that.

I love the image of a perfectly clean living room with only the tree to light it on Christmas morning. All the gifts under the tree would be perfectly wrapped. The meal on standby. Way too many treats and the baking that I will finally allow my family to start eating. Family preparing to spend the day together for fun and visiting. This will not all be my reality this year. But there will be another reality that will be perfect for me. IF I choose to see it that way. If you also love all the parts of that Christmas morning image, choose one or two parts you can manage. Do not wear yourself out trying to do it all. My chronic comrades, I hope you have loving people around you. They would rather have you in one piece than a clean house and perfectly crafted meal. Take time for what heals you so you can take care of others.

Choose your time out and about wisely my chronic comrades. I give you permission to pick the most important and leave out the rest. Attend the gatherings that lift you up. You have enough that drags you down. Spend time with your most uplifting friends. Maybe you can get a group together for some forest therapy to deal with the stress of the holidays.

I have never been good at hugging. I didn’t think it was in my DNA. Brent says I hug like a tree. But I am learning how important it is to hug the ones we love. There is something about getting heart to heart that promotes a deeper love and compassion. My chronic comrades, let’s thrive through this Christmas season. Take some time to get heart to heart with the ones who lift you up. Step outside for some forest therapy. Even if it’s just for a moment in the middle of a gathering, breathe the crisp air.

Spoonies. When you know, you know. Forest therapy can help my chronic comrades. If you’d like to learn more about what it means to be a spoonie. Or how to use forest therapy check out my other posts.

Merry Christmas and take care, my friends!

The Humorous Side of Detoxing

December 17, 2024 pammunkholm

Due to personal reasons I will be shining brightly and unapologetically for the foreseeable future.

I think that we know each other well enough now. We’re all friends here, right? I’m going to share a story today. It will be terribly embarrassing for me and (I hope) most entertaining for you.

But first I want to make sure you’re following me on instagram or Facebook. I have been posting my twelve days of Christmas according to a spoonie on there. Let me know if you can relate.

Showers and Detoxing

I was in the shower a while back. I was thinking about how it is one of the most exhausting acts that I go through in a day. And then it hit me. A hot flash.

Then when I was able to breathe and think again, it hit me. A shower induces a detox in me every time.

If you aren’t familiar with detoxing it wouldn’t be a sensation you easily recognize. I try to do at least one detox everyday.

My body produces or takes on more toxins in a day than it naturally releases. This is due to medications, stress and physical traumas. My body can tell when I am behind on detoxing. I will have worse gut issues and brain fog.

I have a list of detoxes and I will daily check in to see which feels best. I will go into more details on those in another post. Suffice it to say that I detox often and I know the signs.

When my body goes into a detox I feel pin pricks all over my skin. It feels clammy and I can’t tell if I am hot or cold. If it is a particularly heavy detox I will get nauseous and feel light headed.

The doctors I work with are not familiar with this process. Imagine their consternation. What should have been a simple process for them ended in this delightful turn of events.

A Cautionary Tale

What follows is a detailed story of my butt. It’s triumphs and defeats. And far too much information.

I had a boil on my butt. I find this happens when I don’t have enough of a binder in my supplements. I can develop a boil as toxins emerge wherever they gather. This was the first and only of the butt variety.

As is always the case, this came at an inopportune time. There really is no good time to have a boil on one’s butt… but this was the worst. I was going on a trek with a group of youth. We would be walking for miles out in the wilderness.

I did not want to be caught out there if things took a turn for the worse.

I went to the doctor to see what we should do in light of the situation. He gave me two options. Ignore it and hope it goes away. But there is a chance of it getting infected. Or if I preferred he would drain it.

Nobody prefers to have such an area dealt with at all. But infection in that area while miles away from all civilization seemed worse. So we prepared for what we all assumed would be a simple procedure.

When the doctor started to drain the fluid my body went into a detox like no other. I started to sweat. Not a lady like sweat. A dripping, slopping, disgusting sweat.

For a moment I thought the doctor got the wrong spot and was actually draining the lifeblood out of me. I have a high pain threshold. But I had to ask him to stop. In a normal situation I would have done anything to get this thing wrapped up in a jiffy. But he acquiesced to my strange plea to prolong this party.

And we all took a beat. The doctor with his needle. The nurse with her gauze. And me with my butt up in the air. Hm, isn’t this intimate.

The sweat was smearing my make up and making my hair stick to my face. The thin paper that they put on the bed was all wet, falling apart and sticking to me. I was slipping around on the table. How did we get here? I wondered. I did not foresee things going so sideways when I signed up.

I weakly motioned for him to continue. As he did… I promptly passed out.

When I came to, the nurse was asking if I needed anything. What an odd question for a woman with her butt up in the air who is only semi conscious. Sure I’ll take a shrimp penne. What’s the soup for today?

But seriously, friend to friend, am I wearing pants? I asked her.

Next question from the nurse, how would you rate your pain? Zero stars. Would not recommend.

The doctor came back in and this is when it occurred to me that this was a detox. And the professionals in the room had no idea what was going on.

We proceeded with the… procedure. My limbs started to seize up. I couldn’t have moved if I’d tried. (To be clear, I wasn’t trying, there was a needle in my butt!)

I had to ask for a bucket at this point. The probability of vomit was now inevitable. But when I went to take the little tray they give you, my hand wouldn’t move. I spewed and the tray helped to ensure it sprayed everywhere, on everyone.

It’s only awkward if we let it be awkward, guys. They just looked at me. Were they trying not to laugh or wondering what I was on?

At this point I was ready to call it. This had been enough humiliation for me and confusion for them for one day.

In Conclusion

What they must have thought of me as I walked out after a half hour nap in their procedure room. My unkempt clothes, hair and face all nasty with sweat and vomit and bits of bed paper. They must have had so many questions.

There’s probably a picture of me up in the back. Do not drain butt boils on this weirdo.

I failed to see the humour in the situation until at least a week later.

And the moral to this story: detoxing is serious business. Make sure you and your practitioner know what you are getting yourselves into! Especially when it comes to butt boils.

Guess what’s really good at helping you release toxins? Forest therapy! See you out on the trail.

She’s battling things her smile will never tell you about.

-Jonny Ox

Explore Forest Therapy for Fibromyalgia Relief

December 10, 2024 pammunkholm

Fibromyalgia Overview and Symptoms

According to the The Mayo Clinic website, fibromyalgia is a disorder characterized by widespread musculoskeletal pain. This pain is accompanied by fatigue, sleep, memory, and mood issues.

Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals. More women are affected than men. People with fibro may also have tension headaches, TMJ, IBS, anxiety and depression.

Fibromyalgia is like many other disorders. It is on a spectrum and people can develop varying symptoms to varying degrees. These may include (but are not limited to) fatigue, stomach issues, brain fog, restless legs, painful periods, chronic pain, non restorative sleep, headaches and migraines, poor temperature control, swelling in the feet, poor concentration, dry eyes, rashes and itching, bladder problems, trouble staying alert, stiffness, light, sound and heat sensitivity, pain in the jaw, insomnia and IBS. My worst symptom (other than the burning pain under the skin) is twitching and itchy phantom nerve sensations. I feel them most in my nose and cheeks.

These types of symptoms vary from day to day. This variability makes it hard to answer the question, ‘How are you?’.

Less Known Symptoms

Then there’s the symptoms that are not as recognized for being related to fibromyalgia. Dizziness, weight gain, nausea, sensory issues, debilitating coccyx tail bone pain. Sharp or stabbing, burning or tingling sensation. Muscle spasms, aches, cramps, inability to relax. Intense, deep and gnawing bone pain. Feeling spatially disoriented, balance difficulty, staggering gait, dropping things frequently, not quite seeing what you are looking at, and difficulty judging distances. I don’t like driving at night. I find my light sensitivity and difficulty judging distances makes it challenging. It makes me wonder if that’s the reason I would start running into walls as I got tired when I was younger.

And the cold! My body does not like to get cold. It gets into my bones and takes me a long time to warm up. It makes any existing pain worse and the muscles that were already rigid, tighten up a little more. The cold makes skin hurt. Since our thermostats are always off, our bodies think it is 3x colder than what it actually is. Making living in a cold climate a challenge. Although, Saskatchewan seems to be a particularly poor choice on where to live. My chronic comrades will also understand that energy is limited. The cold siphons whatever you have left out of you. All of which can trigger a flare.

Flares

What else causes pain to flare? Everything! Weather changes, emotions, medication changes, severe fatigue, lack of sleep, sunlight, hormone changes, depression, travelling, anxiety, stress, diet, illness, medical tests, overexertion, illness, doctor’s appointments, medical procedures, lack of activity, temperature, injury, etc.

But that all happens on the insides. There are no indicators on the outside.

I Miss Being Me

And then there is the loss of self. Living with fibro often makes me feel extremely useless. I worry about making plans and then needing to cancel them. I worry that any time I do anything it will cause a flare. I can only handle living life a few hours a day. Within that time I need to fit in my exercise and food and therapies. That leaves little other time to achieve anything. It is difficult not to compare my limited life to those who live a normal number of hours per day. I was a mover and doer before. If there was more left to do I would just stay up and get it done. What is wrong with me? is the question on a never ending loop in my mind. Why am I incapable of pushing through?

I run out of energy long before the list is done. Everyday, forever. I fear being left behind, left out and forgotten because I can’t socialize often. It is lonely and it must be hard for others to see me and remember what I am going through. Because it is invisible. My life is not what I had hoped or planned for it to be.

There is so much waiting for us chronic comrades. Waiting to see a doctor. Waiting for a diagnosis. Waiting for meds to work. Once I knew I had fibromyalgia and had done the research I wondered, what I am waiting for now. This is it. This is fibro. I will never be well again. There is no reason left to hope to get well anymore. This is a depressing thought.

Validation for Chronic Comrades

Do you experience any of these symptoms? I believe you. I know that you are not making it up. I am acquainted with your grief. If we were going to make up an illness, wouldn’t we pick something cool? Or, at the very least, pick something that people would believe?

Forest Therapy as a Tool

This all sounds super doom and gloom. But never fear. Forest therapy is here. Forest therapy has been proven to calm overactive nerves. A key indicator in fibromyalgia.

We know the best medicine has always been what nature gives us. Sunlight, sleep, real food, natural movement and exercise, grounding, meditation, laughter and FORESTS! But there’s no time for such things! we say. Until it’s all we are capable of. Then we come back to what has been best for us all along.

So if we have already blown the fuse, here’s what you need to know: The Association of Nature and Forest Therapy Guides and Programs (ANFT) says, “Levels of the stress hormone cortisol decreased in test subjects after a walk in the forest, when compared with a control group of subjects who engaged in walks within a laboratory setting”.

Adds ANFT, “Forest bathing catalyzes increased parasympathetic nervous system activity which prompts rest, conserves energy, and slows down the heart rate while increasing intestinal and gland activity.”

Forest therapy uses immersion in nature through the five senses to help soothe frayed nerves. Frayed nerves are present in fibro. If we can calm them, it will bring our overall stress down. This reduction in stress supports our ability to manage this lifelong illness.

Forest therapy helps restore a sense of mental well-being as well.. It has even been shown to boost our immune systems. This practice can help us recover faster from physical maladies. And manage our chronic illness.

The modern forest therapy movement is rooted in the Shinrin-yoku “forest bathing” practice. This practice was developed in Japan in the 1980s. It has since become a central part of preventative health care and healing in Japanese medicine.

Should we be doing more of the same in western society? I think so!

I am waiting again. But for good things. I have hope in good things to come despite my chronic illness. I know I am developing the tools that will help me not only survive but thrive. I don’t need to compare myself to others. I am building my next self. She is strong and courageous and she knows how to support others.

If you enjoyed the post or if you think you know someone that could benefit from it please like, share or subscribe.

If you’re going through hell, keep going. Why would you stop in hell?

-Steve Harvey

Finding Strength in Nature During Winter

December 3, 2024 pammunkholm

I have loved her my little wanderer, with a mind full of wild forests and eyes that await adventures.

-Connie Cernik

We Are Nature

Have you ever considered how closely connected we are to nature? We have only to look at the pictures below to tap into that relationship. What does this awareness do for our psyche through the months of snow? Darkness and cold are the norm in places like Saskatchewan. We can fall into bouts of depression if we are not aware. We must also be willing to do something about it. Something as seemingly insignificant as looking at the next images can invite more positive vibes.

A Flare of a Week

This has been a week. One of those. You know the kind. I find it hard to think with any depth. I read but it goes in one eye and out the other. The more I strain to discern the more fuzzy my brain feels. I am drawn to images more than words. If you could match your week to an image, what image would it be? Add your image in the comments!

This has been my week. Shout out to @giselledekel for the apt illustrations. They define what I am feeling. What I can’t put it into words. As far as I know, Giselle did not intend to portray chronic fatigue and pain. And yet, in my estimation, she nailed it.

Make it stop. I will do anything to make the pain stop.

Actual footage of me going to get a drink.

When one is stuck in bed for any length of time the positions into which one gets range widely. Having been stuck in bed for two days myself I think I will lose my mind soon. My body craves movement but I have a joint stuck out in my lower back. The muscles spasm after sitting or standing for a few minutes. What does one do when what the body needs in one way contradict what is needed in another?

Sometimes all one needs is a little ‘spring’. Don’t worry, spring will come again.

Constant. fog. Can’t focus. What was I saying? Where am I going? Why did I come in here?

The question is, how much do I actually need to pee? Is this an emergency or can it wait till tomorrow? I’ll wait.

Too tired to get out of bed to grab the cord. In chronic illness this is not laziness, this is of necessity.

Come on, Pam. We have to do the things. ‘Coming!’

Sometimes I feel useless because I compare my day to someone who is not struggling with chronic illness. I think showing up daily means giving 100%. But 100% is going to look different on different days. Maybe one day will be spent taking care of myself, the next resting, the next a combination of the two. And maybe that’s ok.

When I have a week like this one, I need to remember something important. Where there is a flare up, there is also a flare down. These symptoms will subside. Like Mumford and Sons suggest, I can learn to love the skies I’m under. Despite how dim those skies appear at times.

Beware the Weight

What are you carrying under your dim skies? We all carry something. Is it necessary to carry that weight? Some weight is. But other weight is bigger and heavier than we were meant to bear. Are you carrying a mountain that you were supposed to climb instead? Be in tune to the weight you carry. Weight is what helps us grow and get stronger. But it is also what squishes us. We will be more successful in all areas of life if we are open to putting unnecessary weight down. What can you put down to lighten your load this season?

Is your definition of success and your current inability to achieve it an extra weight you can put down? There are times I need to be reminded that my success will be different from that of others. Maybe my success is what I have become as I seek to regulate my nervous system. Maybe the only needed success at this time is not to compare myself to others. Creating a life that is mine. Having genuine and close relationships. The ability to heal from past mistakes. Setting and expecting boundaries to be kept. Knowing my own worth. Knowing how to show up for myself. Speaking kindly to myself. And knowing when and how to let go. Not abilities highly sought after these days. Yet in terms of growth these traits are far from inconsequential.

Having Fun this Christmas Season

Despite the weight and the hard days, there are still opportunities to have fun this Christmas season. Though as C.S. Lewis said,

Have fun, even if it’s not the same kind of fun everyone else is having.

I don’t always know what will add to my fun. But I understand that certain types of fun are difficult for my body. Trying to have such fun will not add to my enjoyment in the long run. This can be difficult and lead to feelings of abandonment and depression.

But there is a type of fun that will work for everyone. It will look different for each person but we start with the same questions. Gabrielle Roth explains that in many shamanic societies, a medicine person would ask one of four questions if you complain of being depressed. The first question is, when did you stop dancing? Second, When did you stop singing? Next, When did you stop being enchanted by stories? And finally, When did you stop finding comfort in the sweet territory of silence?

So this Christmas season, have fun and keep dancing (literally or figuratively). Sing, find enchantment in stories, and find comfort in silence. Find time for novalunosis- the state of relaxation and wonderment experienced while gazing upon the stars. I love stars.

Adopt a slower pace and own it.

Survival

When each day feels like I am barely surviving I start to feel so small. As though there is so much going on in the world and I am missing it all. I am falling behind and being forgotten. I am a moot point. What can I offer the world from my bed? Then I remember these words by Brene Brown.

One day you will tell your story of how you overcame what you went through and it will be someone else’s survival guide.

I do not write to complain or to invite sympathy, I show my scars so that others can heal.

The Power of Love

This time of year we start to think of our favorite things. We make lists of what to get and what to give. If you were to list all of the things you love, how long would it take to name yourself? There is a power in loving yourself. Not a prideful love but a quiet knowing and enjoying. Maybe it’s something we can all work on in the new year.

In my journey of wellness through forest therapy I am finding the real me. Would you like to do the same? Would you like these words to be said of you?

She was powerful not because she wasn’t scared but because she went on so strongly despite the fear.

-Atticus Poetry

In Conclusion

We are nature. Recognize the connections in your short and sweet forest time. When you have a week like mine, success will look different. Check that the weight you are carrying is of worth to you. Keep having fun, dancing, singing and finding enchantment. Find wonder in the stars. Allow yourself to move slower this season instead of faster. You are wintering. Do not feel small in your trials, you are going to be the way out for someone else. On a list of things you love, make sure your name is close to the top. Find yourself and your strength despite the fear.

The trees know about the winter. About the change. About the falling. About the loss. And they grow anyway, What’s your excuse?

– Erin Van Vuren

Sisu: The Art of Thriving in Adversity

November 26, 2024 pammunkholm

The trees bowed their snowy heads, a peaceful prayer in the forest.

Angie Weiland- Crosby

Like the trees that are bowed under the weight of the snow, we find ourselves burdened by our world. What do we do under such weight?

Sisu

Wikipedia defines sisu as stoic determination, tenacity of purpose, grit, bravery, resilience, and hardiness. It is held by Finns to express their national character.

I have been told I am sisu. Maybe you are too. Read on to find out!

But first. I want to make sure everyone is subscribed to the blog. This way, you will never miss a post. If you haven’t already done so, hit the subscribe button. Or maybe share this post with a friend that you think demonstrates sisu.

I quite enjoyed the book Everyday Sisu by Katja Pantzar. If you are looking for an easy read that is uplifting and empowering I would highly recommend it.

Have you been told, you are so brave and quiet I forget you are suffering… ok maybe not in words as poetic as Ernest Hemingway. You may possess sisu. My focus is chronic pain. But we can all relate to suffering.

In life there are always going to be those who curl into a ball as soon as things look difficult. Then there are those who try and try and things don’t get better and then they curl into a ball. And then there are those with sisu. Including many chronic pain sufferers. We have faced so many difficult days and for lack of a better option, we choose to rise up. What has happened in your past that helps you decide to rise up.

Chronic pain is not an easy road. I hope that when you face the choice to curl into a ball, or rise, you choose to rise. Confront the challenge of daily living. And that you will find your sisu.

Sisu is more than just determination. It is extraordinary determination in the face of extreme adversity. My fellow chronic champions will know the difference. We have faced impossible days and found that they do in fact actually end. And then they begin again. We feel to say like Franz Kafka. “I am not well. I could have built the pyramids with the effort it takes me to cling on to life and reason.”

So when wikipedia also suggests that sisu entails an element of stress management we demurely agree. Our existence is stressful. Pain is stressful for the body. This is our life as chronic champions.

Managing Stress

I use this tool in the following infographic as a means of stress management. Can you manage your emotions like riding a wave? I have used this process often and repeatedly to bring down my stress and thereby my pain level.

Foundations of Daily Living

Here’s something else to consider in our efforts to demonstrate sisu. When we incorporate foundations for our health in our daily living we find stress easier to manage. Such foundations include: breath work, nutrition, sleep, movement, gratitude, hydration and what I have heard referred to as clean thinking.

Clean thinking would be guarding against negativity and victim mentality. Clean thinking is productive thinking. You are not caught in a spiral of despair. Clean thinking is inner focused. I ponder on where my behaviors and habits are taking me and less on what others around me are doing. Staying on track with these foundations in managing stress is vital.

And. The best way I have found to manage stress? Say it with me. 👏Forest 👏therapy. It is a beautiful and non intrusive way to manage stress. It is harder to get out into the forest at this time of year in Saskatchewan. But not impossible!

Forest Therapy in winter

Layers are going to be your friend. All the layers. When you think you have enough add two more layers. Be aware of your limitations. Watch for ice. Make it short. Don’t get too far from home. Energy drains even more quickly in the cold.

You probably don’t want to take your shoes off to do any grounding this time of year. If you have leather soled shoes (don’t slip! put them on outside when you are sitting down) you can continue to ground outside. You also have the option to ground using a grounding mat inside. If you are interested in purchasing one I will post a link to the one I have. If your home was built long ago, and you have an exposed concrete basement floor, take off your socks and get grounding down there!

https://a.co/d/8GjYuzl Grounding mat link 👈

Forest therapy is more concentrated in a shorter time in winter. All the same, there is a beauty and stillness this time of year holds.

When we practice forest therapy our ability to have sisu is strengthened. Community is also so important to our ability to hold onto sisu. We understand how to hold space for one another. Me too! Such comforting words to hear.

Genuine Sisu takes walking through the fire

In your efforts to have sisu do not end up an eccedentesiast. Someone who hides pain behind a smile. This is not the way of sisu. Sisu is finding a way through the pain so that you can genuinely smile again.

And yet. Crying releases stress hormones. Swearing increases pain tolerance. Anger motivates us to solve problems. Silence and smiles are not always the right way to deal with pain. It has been said, Sometimes it is good to howl.

Chronic champions have fallen to the bottom and chosen to rise. With whatever parts of themselves are left. They find solace in these words by Sylvia Plath, the floor seemed wonderfully solid. It was comforting to know I had fallen and could fall no further. This is the best place from which to rise and claim your sisu.

This does not mean we push through and ignore our limits. This simply means we live. Day to day. Moment to moment. Recognizing our grit and determination, our sisu has blossomed in the process.

If I do but one thing today may I be human sunshine for someone.

-butterflies rising

In Norway the phrase, ‘up and not crying’ is used as a common response to How’s it going? I feel like that’s the best we’ve got some days. But there is still an opportunity to be human sunshine. And in doing so we demonstrate sisu.

When you feel broken in your pain and what you have lost of yourself, remember the Japanese art of kintsugi. Picture all those broken pieces in you replaced with gold. Through our greatest pain and anguish we can know that what we are gaining in the process is golden. Knowledge. Patience. Grace. A strength of the highest character.

Pain never arrives alone. It always brings strength and resilience.

-Susan Gayle Wickes

Stay warm my friends. If you enjoyed the post please hit like and share it with a friend.

The Spoon Theory Explained: Managing Energy Wisely

November 19, 2024 pammunkholm

The first fall of snow is not only an event, it is a magical event. You go to bed in one kind of world and wake up in another quite different, and if this is not enchantment, then where is it to be found?

-JB Priestly

We are not all so thrilled to see the snow falling today in our area. But I realized something important. When I looked at my grandson’s eyes, so big and shiny as he looked out the window. Pointing and gasping as though we put it there just for him. There is a way to see this new world as magical and beautiful.

Even for those of us who are suffering as the weather shifts. I mentioned the spoon theory in an earlier post. I want to go back over the basics of it as we commence today’s post.

The spoon theory is an analogy. People with chronic illness often use it to explain how their daily energy is limited. Spoons in this analogy represent units of energy. We have a finite number of spoons for each day. We must carefully choose where spoons are ‘spent’. This requires effort. Even the smallest daily tasks can consume a lot of your day’s energy. Tasks like preparing and eating food or attending an event are examples. The need to thoughtfully consider how we manage this is great.

For those who do not suffer in this way, the following infographic will prove most beneficial.

Something that I will acknowledge takes multiple spoons is showering. I share with you my guide:

How to Shower as a Spoonie

gather your supplies and your resolve, we can do this
start shower, warm, but not too warm, but definitely not too cold, that would be disastrous
enter shower, step carefully, we don’t need any new damage
use shampoo (the right one, nobody knows which one that is, but definitely don’t use something that has chemicals, newsflash, they all do)
when rinsing out the shampoo you will likely need to sit down and rest for a time, perhaps have a snooze
get back up, God speed, all of the blood will now be rapidly drained from your brain to your lower extremities leaving you sluggish and dizzy
apply conditioner as you simultaneously embrace the shower wall for support
briefly consider just calling this good
rally 👏👏👏
apply soap to areas easy to reach and just let it slide to the parts you can’t
while leaning ever more excessively on the wall rinse what conditioner you can
exit shower and haphazardly dry off
feel rotten and go to bed with your wet towel
cancel the plans you had because now you have been rendered useless
see? we’ve done it! without a hitch. beautifully executed

Have you ever gotten to the end of your spoons before you got to the end of your day? I often have. What is to be done in such a case? Can you restock your spoon supply? Sometimes the answer is no and the best thing to do is to go to bed and try again tomorrow. And that’s okay!

At times I am getting to the end of my spoons and I can see the day stretching out. I have found a few things that help to restock SOME of my spoons. Or at least it is helping me use what spoons I have left wisely.

Restocking your Spoons

Turning off and tuning out has been a life saver. I put my phone on airplane mode and I will go to a dark and quiet space. I can breathe deep, meditate and just BE without all the distractions.

Comforting food or drink. We have to be careful when choosing foods. I suggest finding one to have on hand for emergencies. Or maybe you are a tea person. A tea break is a great way to slow down.

At times exercise is the right call; though only to the degree that your body will allow. Maybe a stretch is right for some people?

There is nothing wrong with a nap. If that is what your body needs to regenerate then nap away. No shame!

And then there’s my favorite. A bath. I love the soothing warmth and having my body suspended where I don’t have to hold it together.

If you wonder why you are so tired, why we start each day with so few spoons. Consider the fact that our sleep is not the same quality and effectiveness as those without chronic illness. It’s unfortunate but true.

Recognize your limits. Pay attention to them. There is always much to do in a day but make sure you don’t end up like this Little Miss.

Pace yourself. Rest. Take breaks. We have to practice being still. And feeling okay with being still. Often it goes against ever part of our being. But maybe this is how we survive.

And on the days we are not okay?

You are worthy of so many things. Your illness and the limitations it causes do not minimize your worth. At all. And yet. A word of warning, the battle raging in your body is helping you become the person you are becoming. For better or for worse. Choose to make it for the better.

My symptoms have been varied and particularly pesky this month, this year. I am inspired by this Latin phrase. alis volat propriis. Translation: ‘she flies with her own wings’. We feel weak but we are truly strong. We often need to figure things out in our own way and timing. We fall. But still we rise.

To close, I’d like to give our non-spoonie readers another guide. This guide will help you support any of your spoonie friends and family.

Spoonie Translator

In response to “how are you?” we say, “fine thanks!”

This is not even remotely true, don’t trust us.

Translation: I am just barely holding things together but I like to try to blend in

When we say I have a doctor’s appointment coming up

Sounds like a bit of factual information, no big deal

In reality we are worried about it and might need support during &/or after

I wish I were able to work

And you think, “sure but isn’t it nice to stay home all day?”

We really would rather work, join the rest of the world, and make our mark, plus income is always nice

I am tired

“Me too” sounds like a reasonable response but that would be comparing apples and chronic fatigue

Translation: I need to quit now. I probably should have quit a while ago.

I wish I didn’t have… fill in the blank

Do you sometimes think, why do you have to talk about it so much?

Translation: I am devastated by the physical, mental, emotional, financial, employment, etc. changes my illness has brought.

Actual footage of me holding things together

Sometimes we just need to laugh. It’s a good coping mechanism. I hope I have brought a brightness and laugh to your day. Maybe a connection where you think, me too! Let me know in the comments.

How wonderful it is that we laugh because our bodies cannot contain the joy.

-unknown

If you’re enjoying the blog, hit subscribe so you never miss a post. I’d love if you’d share this post with anyone you think it would help. Take care my friends.

Navigating Chronic Illness: The Patient’s Perspective

November 12, 2024 pammunkholm

The forest speaks to my soul in a language I already know; a distant lullaby from the womb of peace and solitude.

-Angie Weiland- Crosby

I am literally addicted to forest bathing. While the ability to forest bathe in the winter does create challenges there is a way around most of them. We will discuss ways to combat the winter blues in a future post. We will also talk about how to maintain the healing momentum we all feel more powerfully in the summer.

But today I want to focus on doctor appointments. What’s the big deal about doctor appointments? Anyone with chronic pain/ illness knows. Let me explain the realities of chronic pain and medicine. This is for those who have not had to fight to get care.

The relationship between doctor and patient is supposed to come to a successful resolution. Diagnosis. Or death. The tricky nature of the chronically ill patient and their doctor is an uncomfortable one. There is no resolution or death. There is no treatment plan or hope for the future. It is hard for many people to wrap their brain around. Surely there is a surgery to be performed. A trial drug to be prescribed. If nothing else there must be the greatest of emotional supports. Not so.

My first thought with a new doctor is to walk in and ask for a refund on this body. It’s defective and terribly expensive. Actually explaining what has happened and what is now going on is exhausting.

Our world is set up to have an answer for everything. Just ask google. Or Siri. But not all doctors know all medical conditions. And some conditions don’t resolve.

I read this the other day: Having a chronic illness is like having severely bad eyesight and needing glasses. Except glasses don’t exist. Most people don’t believe you have bad eyesight. You get judged for not being able to see correctly, people think you are faking for attention. People tell you all the time they wish they had your bad eyesight so they could get out of certain obligations. You cannot go to work because you cannot see. You cannot read a page in front of your face, doctors say you are just depressed. Everyone around you tells you to try harder to see. Lots of people tell you to do yoga.

There are healthy people that are under the impression that chronic illness sufferers have a free ride. We “get to” stay home all day. And we get access to all the equipment and therapies needed for our condition. That is, sadly, just not true.

The pains I’ve had to go to get supports is almost too much. It is painful to think. Painful to fill out a form. Painful to sit in a waiting room to talk to someone about it. Painful to have them dismiss me and suggest I seek counseling.

Our medical system is more overloaded than before 2020. Still, these issues I am experiencing were a problem long before that. There is a lot of waiting in the medical system. At any given time, I am either waiting to see a doctor. I am waiting to hear back from a specialist. I could be waiting for a prescription to start working. Waiting on a cure. Or I’m waiting on a medical test that probably won’t show anything anyway!

Or my go-to move. Waiting in the walk in for hours because I forgot to book with my doctor before my meds ran out. Again!

This graphic from MyBodyIsTryingToKillMe.com could not be more accurate. When you’ve experienced medical gaslighting the time periods before, during and after appointments are even more anxiety triggering.

If you haven’t heard of gaslighting, allow me to catch you up. Gaslighting involves using psychological manipulation. This manipulation aims to undermine a person’s faith in their own judgment, memory, or sanity. In medical gaslighting it can look like being dismissed in your concerns or questions. Disregarding or minimizing your pain or other symptoms. When medical professionals try to pass off your musculoskeletal pain as something that is just in your head. Being stereotyped for gender, race or condition. Being shamed for attempting to self diagnose (have you seen that smirk?). Refusing to order lab work, imaging or a referral.

How many of these have you experienced? Comment below with your story.

Pre appointment jitters start coming up for me the day before. Or a week before, depending on how much I need this doctor to hear me. I have spent hours making notes, writing down questions and praying this doctor would hear me. And take me seriously.

It is demoralizing to be told you need to do more. You are simply waiting to be told what to do that will not make symptoms worse.

During an appointment I have been told nothing is wrong. That I just need to do more physio. That I won’t get better if I don’t get off the couch. This is the tip of the iceberg. It is demoralizing to be told you need to do more when you are simply wanting to be told what to do. In each diagnosis there is an attempt to create pain. Like getting your car engine to do the weird thing it does for the mechanic. But my issue was in “the wiring”. It would hide from doctors. Then it would show up as searing pain the following day. When they didn’t see it, it was hard to convince anyone it existed.

Post appointment always left me feeling let down. Major depression. I would have so much hope that this would be the answer. Only to be told there was nothing they could do. After the worst appointments, I would start looking for a new doctor. This added a fresh layer of stress to the pile. Then there is the drain circling doubt. I would question my thoughts. My symptoms. My pain. Is it all in my head?

I don’t access the medical system for many things anymore. There is so much more pain there. I use it for what it can offer and the rest I get from nature.

I am grateful for what I now know. Because the effects of medical gaslighting in my life were starting to take their toll. It has contributed to my ongoing depression and anxiety. It has given me a mistrust of doctors and specialists. Though my mistrust in myself has been the greatest weight. I have hesitated to seek care for myself and my family in other areas because of my experience. That has not always led to the best outcome.

While this is all very frustrating it is wonderful to know there are others out there. I am not the only one. So here I lend my voice to tell you that you are not the only one. I share these wildly accurate and humorous thoughts from Nia @chronicnotebook to end on.

This is hilariously accurate. I have definitely given myself this pep talk.

You are a forest and no matter how many wildfires burn you down you’ll always find a way to grow back.

C.S. Lewis

Living with ME/CFS: A Journey Through Chronic Fatigue

November 5, 2024November 5, 2024 pammunkholm

So, if you are too tired to speak, sit next to me because I, too, am fluent in silence. – R. Arnold

What is your toxic trait? I have many. One of mine is pushing through when my body is exhausted and needs to stop.

{MYALGIC ENCEPHALOMYELITIS}

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Mya what?!? I like this infographic for breaking it down. It is so much more than being tired!

At the time of my diagnosis I wasn’t suffering many of the symptoms. It wasn’t my first concern. I was just trying to get my floppy joints to hold still. ME didn’t seem like a big deal. So what if I’d be tired. I just wanted the pain to stop.

But now, years later, I can see what ME has done and is doing to my body. Pushing through is never the right answer with ME/CFS. And having it?… actually is a big deal. I need to be aware of how it affects my body and what I can do to manage the symptoms.

If you’d like to know what it’s like to have ME/CFS follow these 6 simple steps:

First you’ll need to fast for 24 hours
Also stay awake for those 24 hours
Every time you stand up, spin around 5 times really fast
Throw yourself down the stairs 5 times in a row
Run 10 miles
And continue to try to live a normal life
this list is brought to you by sunshineandspoons.com

Accurate!

{SYMPTOMS}

The actual list of ME/CFS symptoms includes post exertional malaise. It seems obvious. You get tired after you perform an activity. Everybody gets that. But with ME there is a disproportionate amount of exhaustion for the type and length of activity. For example, showering is so tiring.

What is it? Arms up? Standing in one spot? I don’t know for sure but I need to rest after a shower. Sometimes in the middle of a shower.

Next on my list of symptoms is muscle pain and weakness. I need to exercise to keep my muscles strong enough to hold me together. When we leave the gym I have so much muscle weakness. I have trouble getting to the car without willing my body to keep moving. I’m daily tempted to ask my hubby for a piggyback. I feel the lactic acid running through my veins. Like I just ran a marathon and then sat down for a half hour. Then stood up and tried to walk. Can you feel the Oof?

And my favourite (and most embarrassing) symptom. Cognitive impairment. Brain fog. Oh the brain fog!

This is my life now. Anyone I have had a conversation with in the past couple of years can verify.

The list goes on. Sleep problems. Hypersensitivity to light and stimuli. Flu like symptoms, it has been compared to feeling poisoned. Shortness of breath. Difficulty swallowing and chewing. Sweating. Dizziness. Muscle pain, twitching and uncontrollable spasms. Poor tolerance for hot and cold. Visual disturbances (waves or blurred vision). Inconsistent central nervous system operation. Word finding difficulty. Disjointed speech. Difficulty comprehending text. Difficulty with processing and concentration. Feet burning. Poor digestion. I only list here the symptoms I have experienced. The list goes on for others who suffer ME. As I reread this list, it sounds like the side effects of a drug that’s not worth taking!

Just like so many syndromes in our world the severity of ME each person experiences is on a spectrum. Some people need to spend their lives in bed. Often separated from life to handle the pain that accompanies ME caused by any exertion. My heart goes out to those who suffer in such a way.

I was there.

{{MY STORY}}

In 2020 I hit a breaking point. But not for the same reason many other people did.

My body would no longer work the way it always had. Pushing through wasn’t a viable option. The wall of exhaustion was sudden and extreme. It was physical, mental and emotional. I had to go to bed and I didn’t know when I’d be strong enough to leave it again.

No 20 minute nap was going to fix this.

I had to stop working. I eventually (tearfully) decided to close my business. I couldn’t make my own meals. I didn’t want to eat anything anyway. I didn’t feel like sleeping but I was SO TIRED. My brain was spinning and all my nerves were ready to zap if not treated with the utmost respect.

Most heart wrenching of all. I had to leave my family. I had to go where it was quiet and still. There is nothing quiet and still about three teenage/ young adult sons and a farm to run.

I needed to be warm. And hushed. I needed to focus on me. Just me.

It. Took. Months. Of being still.

More months of learning to slowly start life again. And then starting over again but with boundaries.

More months of realizing this is my life now. I had expected to put my life on pause for a short time. And to pick up where I left off as soon as I was “better”. But you can’t live on pause. And there was no “better” forthcoming.

Not everyone who suffers ME will experience the same results as my story. Even if they do exactly what I did, outcomes differ. You can do everything right and still suffer the symptoms. I managed to break free from chronic fatigue’s strangle hold. By no small miracle.

During those first months my brain just wanted to stop but I had so many daily worries. I couldn’t handle the thought of letting them go. And there was nothing to physically be done in my state to take care of them.

So my mom would come into my room at her house. She would sit at the end of my bed and write all of my worries down.

She’d help me sort out what needed to be taken care of and who should do it.

Over time I started physically building myself back up so I would be strong enough to go home. I’d walk around my parents house for a minute. Then two. Then three. Everything had to be such a slow build. Or I’d start from square one again.

I couldn’t handle any stress. Try avoiding that in this day and age! It was and is an ongoing battle to recognize and alleviate those triggers.

This all seems a lifetime ago. Today I live an almost normal life. Normal for me I should say. I still can’t work. I have to pay attention to how I am feeling at all times. I need to make sure I am not overdoing anything. I listen to my intuition when I take things on or when I choose to politely decline. Sometimes I get it right and sometimes I have to go to bed.

{OVERCOME}

I don’t like being known as the woman who is always exhausted. Pushing through and setting off flares in my body. I don’t want to be remembered for just barely holding it together.

I want to be remembered as joyful and relaxed. When I rest I can let it restore me not frustrate me. I want to be remembered for loving fiercely and for being a woman who knows her worth and her strength including her limitations. Living in the mess and magic of this life. I don’t want to take things too seriously!

What can you do if you suffer some of the same symptoms? What are the treatment options? Doctors will tell you there is nothing they can do. While this might be true, there is plenty that you can do.

{TREATMENT}

Forest bathing is my number one recommendation. Get into nature and find comfort and healing in its embrace. As the days get colder just add more layers. If you need help to get the greatest benefits out of the forest head over to my contacts page. We can go together and I can show you how.

Do not find yourself guilty of my toxic trait. Do not push through. Just keep swimming is not always the right advice especially not for chronic pain sufferers. Just keep swimming till you have a flare. Just keep swimming till you are in so much pain you can hardly move. Just keep swimming will put you in bed. Your best option might be to just stop swimming and respect your limitations. And take care of yourself accordingly.

Here are some other things you can do to treat ME/CFS. Each of the ideas will put a drop in your bucket. The infographic mentions Fibromyalgia too. It is very common to have more than one chronic disease to manage. It is not like Pokemon. You definitely don’t want to catch them all.

Do not let your bucket run dry! Keep a daily schedule to stay on top of these treatments and ways of life.

Other treatments include pharmacological (for sleep, for twitches and spasms, for depression that often accompanies chronic illness, muscle relaxants (not me, my muscles are stretchy enough on their own), or medical marijuana for pain).

More treatments for pain include massage, physiotherapy, chiropractor, meditation and relaxation, heat and cold packs.

Sleep. Set up a soothing bedtime routine and stick to a regular sleep schedule. I am working on practicing what I preach in this area.

Other useful tools: Add salt to your water for extra hydration. Compression socks. Breathwork. Clean diet. Memory aids. Ear plugs and eye masks. Ask what your body needs and follow its answers.

{TO THOSE WHO SUFFER}

I end with this justifying quote for all those who suffer from ME/CFS. Dr. Clare Taylor said,

I maintain the sickest patients I have looked after are ME patients. They suffer. Every single day. For years. And get told to try harder. One day it will be accepted for what it is.

I don’t know this doctor. But here, here! Vindication for all who suffer.

If this sounds familiar to you, and you want to discuss more than what I cover on the blog, reach out to me on my contacts page. Tell me your story. There is healing in just that.

And she stopped… and she heard what the trees said to her, and she sat there for hours not wanting to leave. For the forest said nothing, it just let her breathe. -Becky Hemsley

The Inconvenient Truth About My Connectivity Disorder: and what forest therapy has done to help

October 29, 2024 pammunkholm

And sometimes I have kept my feelings to myself because I could find no language to describe them in. – Jane Austen

I had a cousin at a family reunion ask me what it is like to have a connective tissue disorder. For anyone that is familiar, I have something close to Ehler’s Danlos Syndrome. Essentially what that means is that I have extremely mobile joints.

My cousin inquired how such a thing affects my day to day life. The question was so kind and thoughtful but I was thrown off guard.

Trying to sum up my medical history and symptoms and how it has affected me in the past and how it affects me now is like trying to perform open heart surgery with a Degree in Finance and the tweezers from the game of Operation.

My mind was starting to poke at a few entry points but it’s so all encompassing. I couldn’t find a place to start.

I was saved by the commencement of a presentation that we both wanted to watch. I didn’t end up answering her question.

But it is a query to which I’d like to be able to respond. I am going to attempt to do so here.

MY main issue with hypermobile joints is that, as the song goes, Every Now and Then I Fall Apart. Except every now and then should actually be all the time. I am lucky enough to have some ligament strength. There are those who suffer much worse than I do.

Collagen is the glue that holds our bodies together and gives our tissues their strength. It affects our skin, bone, muscles, cartilage and organs. So when we are asked what part hurts… it’s just easier to ask what doesn’t hurt.

My connective tissue disorder is nothing compared to what others go through. As with so many disorders there is a spectrum to illustrate the severity. While there are others who suffer more than I do there are also those who suffer less. To clarify, I am not talking here about occasional aches and pains. That pain is also valid. But we can all agree it does not grant understanding of chronic pain/ illness.

Mercifully, I don’t suffer from dislocations. Only from tiny subluxations all over my body. They are sometimes referred to as tiny traumas. That makes them sound so cute.

Your joints are supposed to slide around in their sockets. But with a connective tissue disorder, your ligaments and tendons don’t have the strength they need to hold you from sliding out too far. Once it goes past a certain point, the bone will get stuck. This is called a subluxation and will need manipulation or massage to get it back in place.

I’m not sure how this manifests in the lives of other sufferers. But for myself, due to the length of time this has been happening and the traumas that have weakened joints, there has not been a time in over a decade that all my joints were in at the same time for more than a day.

This means my body is always “upset”. There is no rest. It is always working to stay on top of the pain. My muscles have to take over for the injured or weak joints which is also tiring.

I’ve read that people with EDS have high adrenaline, making it hard to fall asleep. I can relate. Adrenaline is great! Until it’s not. It has helped me get through more than one function or event despite my limitations. Keeping me going until the work is done or the party is over.

The danger in using up those adrenaline reserves is that I do not recognize when I’m in that mode. I still think I am awake and in tolerable pain. When with no warning I am suddenly exhausted and past the point of pain relief. I know others with chronic pain who do more than their fair share of this a well.

If you suffer from chronic pain, be aware of your adrenaline reserves and don’t run them empty.

I mentioned I don’t have Ehler’s Danlos Syndrome (EDS) but something similar. I use their images because they apply to me.

I heard a fellow sufferer say once that their joints go out more than they do! I concur. My body does not like the evening, or the cold, or anything too loud or stimulating. It is a picky body. Staying in is the best plans for this lady!

But I can sing along with the song, I’m Flexy and I Know It. That’s the words, right?

Sometimes a picture can say it all.

If you can do this you may have a connective tissue disorder. Who knew? I thought it was just a fun party trick to be able to contort my body for the amusement of friends.

The reason I do some explaining about my disorder is to hopefully connect with those who are suffering from some of the same issues. It can be difficult for generally healthy people to understand. With the best of intentions they will give you all the medical advice you never wanted. In most cases it won’t apply. General health advice will often not help those with chronic illness.

I am still healing. I have a ways to go. But to use the idea of Stephanie Spark, I want to walk through the flames of this hell with buckets of water ready to turn around and pour it on those still consumed by the fire.

To my fellow sufferers, do not doubt yourself. You are a warrior.

Our bodies are not made to deal with the level of toxins in our world. Add to that high levels of stress, lack of sleep, medications, surgeries, etc. So what can we do?

I have an answer for the healthiest to the most toxic ridden among us.

Forest therapy.

Going into any natural space is so beneficial. Ground. Meditate. Pay attention to your surroundings. Wrap up warm and breathe in the fresh, crisp air of fall.

When you are ready to practice forest therapy with a guide to get the greatest benefits, reach out and contact me. I can help you maximize the benefits you experience in the forest.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit and resign yourself to the influence of the earth. – Henry David Thoreau