Tag: chronic illness

The Spoon Theory Explained: Managing Energy Wisely

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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

  1. gather your supplies and your resolve, we can do this
  2. start shower, warm, but not too warm, but definitely not too cold, that would be disastrous
  3. enter shower, step carefully, we don’t need any new damage
  4. use shampoo (the right one, nobody knows which one that is, but definitely don’t use something that has chemicals, newsflash, they all do)
  5. when rinsing out the shampoo you will likely need to sit down and rest for a time, perhaps have a snooze
  6. 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
  7. apply conditioner as you simultaneously embrace the shower wall for support
  8. briefly consider just calling this good
  9. rally 👏👏👏
  10. apply soap to areas easy to reach and just let it slide to the parts you can’t
  11. while leaning ever more excessively on the wall rinse what conditioner you can
  12. exit shower and haphazardly dry off
  13. feel rotten and go to bed with your wet towel
  14. cancel the plans you had because now you have been rendered useless
  15. 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.

Living with ME/CFS: A Journey Through Chronic Fatigue

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

Top 10 Inappropriate Things to Say to Someone with Chronic Pain

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I have been doing research and reading on chronic pain as it relates to forest therapy. As I’ve done so I have come to the conclusion that I am not the only one to have struggled in the past with things people say that, while well meaning (in most cases) can come off as offensive to someone struggling to just get through a day.

So in honour of those who need support, not to be treated as a suggestion box, here is my top ten list of inappropriate things to say to a person with chronic pain.

#1 Oh ya I have _______ too.

For me it’s sore muscles. Other people get sore muscles too. I don’t want to take that away from anyone. Pain is pain. But when I’m talking about my muscles not doing what they need to do it is despite all of my effort over years. It is a different story than someone who has a sore back because they slept on it wrong or need to go to the chiropractor. There is an answer for the where and why of their pain. And hopefully a treatment option. If not, you are welcome to join team Don’t Tell Me You Have It Too. For those searching for the right way to converse, think of waking up everyday for the rest of your life in pain. Then enter the conversation with humility and grace instead of comparison and minimizing what we are going through.

#2 You’re too young to be dealing with ______

And yet here we are. So do you not believe me, or…? I agree. I am not the age of someone who should be struggling with physical technical difficulties. And yet this is the body I have and I have taken really good care of it. And it’s letting me down. Please support me by recognizing that it is happening despite the odds and help me find ways to endure and enjoy life.

#3 You don’t look sick.

While that seems like a good thing it can be really difficult to navigate a day while in pain and nobody knows. Picture going to the grocery store with a broken arm but there’s no cast on it. It looks fine. By all appearances one should be able to handle a trip to the store. And yet the pain you are experiencing is almost unbearable at times. I have had to sit in the middle of a store because my back was telling me it was done by tweaking and spasms. I’ve stood in a line up to get my prescription filled and almost thrown up in pain. A more empathic response to someone sharing their pain with you is to be curious. Ask supportive questions instead of making a statement of fact that is hard to handle on a day to day basis.

#4 Have you tried _______?

Yes. The answer is yes. Someone that has struggled with their health for any amount of time has tried that. If there is a reason they are not willing to try ______ it’s time to back off and listen. They know their body. They know their history. They know what a setback from trying a suggestion looks like. For a more enjoyable conversation for us both, let’s keep our suggestions to ourselves unless they are requested. Assume I am doing the very best I can and that I will be guided to what is right for me. The odd suggestion is acceptable as long as there will be no argument over whether I should try it or not. That is my call to make, end of story.

#5 I know someone who had that and they just had to _______ and now they’re better

I am super happy for them. Many autoimmune and nerve issues will affect people extraordinarily different. How it manifests in your distant relative that just had to drink a concoction everyday is not the same way it manifests in me. Nor will it be “fixed” in the same way. My condition is chronic. That means it will still be here tomorrow even if I drink Great Aunt Margaret’s concoction. If you think you know someone with the same thing don’t tell me how they got better and so can I. Listen to my struggle and empathize. Don’t try to manage my disease, that’s my job.

#6 You seemed fine yesterday.

And for that I am paying dearly today. The way my body works is that it will not give me any signals when I need to stop an activity. It will carry on and the next day I will wish I were dead. I am willing to make a sacrifice of paying dearly for the right things. I choose carefully. Time with my grandson. Time spent with friends. Time in nature. I never know what will push me over my limits but if it is for the right reason I am willing to sacrifice. To put aside my health for tomorrow so I can play today is important to me. Instead of questioning my story thank me for the time I am spending with you and appreciate that it might mean I am in bed for the day tomorrow.

#7 Must be nice to stay home and not work

Nope! Big hard nope on that one. Most people with chronic pain have a desire to be out in the world. Working on career or family. I am grateful my family raising is pretty well over. It would be terribly difficult to do this with little kids. I was just starting a career as a piano teacher with enough students to be almost full time when my body started giving out on me. Our lives were going the direction we had been planning and working for all of our married lives. And then it all came to a crashing halt. Plans had to change. Not in the direction we would have chosen. So while I am home and resting I am thinking of all the jobs I would have liked to try. And how much easier it would be to have a two income household instead of one. I feel guilty for the money that goes to my health and wellness. I think most chronic pain sufferers would agree that having the choice to work taken away is not fun in any way. Just avoid this one altogether.

#8 Why are you on so many medications? They are so bad for you!

It has been hell trying to find the correct meds and dosage without side effects that make them not worth it. I am also learning how the stress of being in pain takes its toll on a person physically and mentally. One cannot just grit their teeth and bear it without a cost. Medication is a very personal choice. It is a long and hard road to get what you need. It is hard to be on a controlled substance. I have been questioned about over medicating until the pharmacy realized it was a mistake on their end not mine. It is hard to be on the verge of running out and too tired and in too much pain to make the appointment, go to the appointment, and get the meds. Please don’t question my choice because you have not travelled the road I have travelled. I hope to not need medication someday. But today it is saving me. That means they are bad for you! But not for me.

#9 You’re still dealing with that?

Yes. I have been dealing with it for over a decade. If I get better I will be shouting it from the rooftops and you will know. Until then assume that my chronic condition is still being chronic-y. I have heard our brains want everything to be resolved. We want there to be an answer for everything. For all problems to conclude. But that is seldom the case. Recognize that when you are uncomfortable with me still being “sick”, it is your brain wanting things to resolve. I would like it to resolve even more than you. So being reminded that things are still wrong isn’t helpful. Instead ask me how things are progressing or if there have been any new developments. There are always changes, sometimes positive.

(and speaking of being positive) #10 Inappropriate thing to say to someone with chronic pain: Just stay positive

My life got to a very dark and negative place. If someone had approached me at that time and told me to stay positive I would have slugged them. I know that staying positive has it’s place in healing. Yet there is also healing in the struggle and in feeling all the feelings that come with it. There is a time for feeling hurt at being misunderstood and for feeling too tired to do this anymore. As long as you just visit that neighbourhood and don’t move in. Feel the negative parts. And then return to the light of hope. Hope for good days. Hope for understanding doctors and team members. Hope taking us to joy in this journey.

It can be really hard to be a support person or friend to someone who is struggling with chronic illness/ pain. You likely have your own list of phrases you don’t like to hear. I don’t expect everyone to walk on eggshells when it comes to talking to me. I fully expect to hear these in the future and I will do my best to recognize where you are coming from. But for those who know someone with chronic pain, maybe this will benefit you in some way. And if you are a chronic pain sufferer, maybe this puts into words why some phrases can be hurtful even when they are presented as showing concern.

This is anything but a comprehensive list. What would you add?

While my condition is chronic, the symptoms are suspended and alleviated in the forest. I can search into my body to know what it needs and how to respond to those needs. I can connect to the earth and it’s rich aromas and textures and melodies. I can let go of any of these phrases I may have heard recently because when I am in harmony with nature I feel more in harmony with myself. Head over to my contact page to book a forest therapy walk or if you have any questions for me.

Take care my friends.

Overcoming Chronic Dis-ease in Modern Life

pammunkholm

I attended a family reunion this weekend. What a wonderful and terribly stressful event those are! It was lovely.

I looked around at my mom, her siblings and cousins and all their spouses. They are in or around their 70s. Many of them are starting to have symptoms of old age or chronic conditions. Their grandparents before them lived to ripe old ages of 98 and 94. Their parents lived to reasonably old ages. And they are dealing with chronic health issues in their 70s. And even more concerning is that their children are also starting to deal with different but serious health conditions in their 40s.

What is happening? I would like to see your thoughts. Feel free to comment.

Here is my theory. Our world has changed drastically in the last few generations. The food we put in our bodies is further from the earth and more processed. The information we receive is constant and confusing. The effort it takes to be physically active can be too demanding after an already full day and exercise is less of a priority. I have already mentioned the distance we have put between ourselves and the earth, the lack of grounding we experience. And stress. I feel we have been hoodwinked into thinking this modern life is so much better than days gone by.

My number one caution to those who have not yet started experiencing those effects of this world is to lower your stress level!!!

I suggest this to my family and friends in their 20s and 30s and they scoff. If only we could! No seriously, do everything you can to lower your stress levels. Every person can find something that works for them. It is not about pretending things are ok or getting rid of our children who are the cause of the stress. The answer is to find coping strategies that work for you.

Maybe that’s hiding in the bathroom and doing breathing exercises for 30 seconds every few hours. Maybe you have a monthly date with a massage therapist. Maybe you have a time of the week that is just yours and you can go for a walk in nature! The options are endless.

Don’t scoff and picture your life getting calmer when your children are older. I noticed something at this family reunion of 60-some people. Most of them from one set of (my generation’s) grandparents.

I had children when I was young. I was so busy with my three boys for what seemed an eternity, And then they grew up and I relaxed as I watched my siblings and cousins struggle with their babies and toddlers. And I laughed and laughed and laughed.

Now I see them sitting and relaxing with their young teens and young adults and I am running around after a grandchild. And I see my older cousins that are also at this stage who have had time to relax and watch and laugh and now they are running around helping with their grand littles too. It all goes around.

I see the changing of the guard. My generation is starting to care for the older generation in small and simple ways, It all goes around. There are times of hard and times of growth. I see the importance of it all.

How do we find a way to bring that stress level down in all stages of life? Maybe you can’t get it to base level when you are raising your babies. But you can likely bring it down from wherever it now resides.

I don’t have the answers but I do want to start the conversation. Is our generation the one to say, things need to change? How do they need to change? Do we adopt a Mediterranean lifestyle? It seems to work for them!

What can we adjust in our individual lives and as a community that will stop the progression of dis-ease that is happening to us and those we love? Dis-ease if you divide the word like so, is the hard truth. Many of us experience chronic physical, mental, emotional dis ease. We are never at ease. But constantly and drainingly the opposite. This can’t be the only way!

It might take something unheard of. Something that seems too hard. IMHO there are so many broken systems. Which ones need fixing so that our kids and grandkids don’t have it worse? Which ones are in your sphere of action? Will generations after be able to look back and see this moment when the tides shifted in their favour because of what we were willing to do. But what is it? What will shift us from dis- ease to a life- not one that is easy but one where you can be at ease while you deal with the vicissitudes of life.

In the book, The Healing Magic of Forest Bathing, author, Julia Plevin says, “As a society, Americans have reached the impacts of being disconnected from nature and are suffering as a result. Chronic illness including cancer, depression, anxiety, exhaustion, and ADD are widespread and on the rise, These issues affect adults and children alike.”

So what should we do about it? I am open to suggestion. One thing that resonates with me is to get back in touch with the earth and what she has to offer. In any way and every day that you can.

Dr Qing Lee, the world’s foremost expert in forest medicine, wrote in his book The Japanese Art and Science of Shinrin- Yoku: Forest Bathing, “Forest medicine is a new medical science that could let you know how to be more active. More relaxed. And healthier with reduced stress and reduced risk of life style related disease and cancer by visiting forests”.

I don’t think forests hold all the answers for how to live in this world. But I know that being in the forest clears out the cobwebs and I can focus again on the needs of my day. If you’d like to experience what forest bathing has to offer, head over to my contact page and let me know how I can help.

Take care of each other out there my sweet friends.