Turning Shame to Victory

I should on myself today.

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As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

Tired vs. Exhausted

I’m so tired, I’m repeating a post from the past!!!

Have you ever felt exhausted? So exhausted you could barely move?  The kind of exhausted that leaves you feeling almost helpless? Guess what…I have a new word for you!!!

Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!

Quanked

Taken from Grandiloquent Words:
Quanked
(KWANK’d)
Adjective:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy. Origin uncertain Used in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality have been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time.  I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
  • It’s like swimming through concrete while being on fire at the same time (this was mine).
  • It’s like constantly having a “pins and needles” sensation that never goes away
  • I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
  • There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
  • My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
  • I feel like I’ve been in a war, but you can’t see my wounds
  • Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.

There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:

  1. Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
  2. Power down the electronics (TV, computer, Smartphone, etc.)  one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
  3. Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
  4. Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
  5. Limit Alcohol before bed.  You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
  6. Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
  7. Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
  8. Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
  9. Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
  10. Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.

If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. In the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.

Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?”  “Where did I put the chequebook?” “When is the next Book Club meeting?”  Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.

Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.

Remember…there is always hope

A Little Bit More Joy

This past summer, I wrote a post called That Which Brings Me Joy in which I talked about my hummingbirds and provided a list of things to do which could bring some joy into your life.
My hummingbirds continue to bring me much happiness. I bought a different feeder for them which the wasps that plagued me can’t get into, and I also bought a wasp trap which I’ve baited with a double concentrate of sugar water. The birds are happy, the wasps not so much, but there aren’t as many of them now with the weather cooling off as we head into fall.
I wanted to continue my list of things that might bring happiness into your lives, so here goes. I hope there are no repeats!!

  1. Write a thank-you note to yourself (on your best stationery, of course).
  2. Venture outside for a five-minute walk.
  3. Indulge in a delicious piece of chocolate (or a fresh colourful smoothie).
  4. Find a piece of jewelry you haven’t worn in a while – feels just like vintage shopping!
  5. Pick fresh flowers or send yourself a little bouquet of favourite flowers.
  6. Visit a funny blog, watch a movie, or spend time with someone who makes you laugh.
  7. Find serenity at a favourite local spot (ex. a park, a lake, a coffee shop, a little nook in your house or office).
  8. Bake a favourite treat with a family member or friend — or bake alone and surprise someone special with yummy treats.
  9. Discover an uplifting and fun song – something new.
  10. Slow down and enjoy a long brunch.
  11. Try a new fitness class.
  12. Indulge in watching tv or reading a magazine – guilt free!
  13. Declare a vacation day – write it BIG on your calendar so you get to anticipate this upcoming personal time (a vacation day can fall on the weekend).
  14. Do a good deed — help someone else find joy.
  15. Treat yourself to a favourite cup of coffee or tea – enjoy the flavours and activate your senses.
  16. Be goofy! Dance around your room to your favorite music.
  17. Explore the inspirational and joyful blog, Kind Over Matter.
  18. Get rid of two items in your physical environment that make you feel negative.
  19. Bite into a piece of fresh fruit.
  20. Wear a color that makes you feel confident and joyful!
  21. Write down three things that you are grateful for.
  22. Call a supportive friend – or reconnect with someone you haven’t spoken to in a while.
  23. Start a book that you’ve been meaning to read.
  24. Browse books at your local bookstore.
  25. Learn something new (ex. a new hobby or craft).
  26. Write a thoughtful comment on a personal blog you read (comments mean the world to me – hint hint!).
  27. Create a list of 10 things you love about your significant other – surprise him/her with the list.
  28. Write a hope note and leave it for someone to find.
  29. Connect with your fellow tweeters. Send a tweet with a joyful message.
  30. Create a list of 10 things that make you happy – your own personal “joy” list.

I hope you enjoy this list and make good use of it. If you have other ideas or suggestions, leave them in the comments. Thanks, and remember…
There is always hope

That Which Brings Me Joy

Joy is an interesting concept. It can happen because of tiny little things or we experience it because of huge and delightful things. I’ve been tackling a lot of serious subjects lately, so today, I thought I’d talk about joy, and how being happy and thankful can be possible when you live with Chronic Pain and Invisible Illness.

I have a hummingbird feeder that I recently added to my backyard. Apparently, I also have a wasp nest nearby. Right after adding the hummingbird feeder, a swarm of wasps took it over, preventing these tiny birds from having a chance to use their new feeding station. I was mad. This was NOT why I had put the feeder out, so I started brainstorming ideas about how I was going to correct the situation. I went online and one of the ideas was to put out a food source for the wasps and then to move it away from the feeder a little bit each day until it was far enough that the birds would feel safe to eat again. That was all well and good, but it didn’t get rid of the wasps, it just relocated them further down my patio. I wasn’t sure where the nest was, and I wanted the wee pesties to go away completely.

Still, I put out a dish with a super concentrated nectar for them and sure enough, they started leaving the hummingbird feeder alone and going to their own dish. Some of them drowned but what mostly happened is that a bigger swarm of wasps showed up, now that they had a food source. Even more frustrated, I bought a wasp trap and hung it near the bird feeder, hoping to confuse the little buggers and trick them into dying. Oh yes…I can be very mean when I need to be! And yes, this too worked…but obviously the nest was nearby because even more wasps showed up!! So, where is the joy in all this? Well, I watched as the wasp trap did its job…many of the new swarm were attracted to the extra sweet nectar and flew into the trap, but then found themselves unable to get out again. I watched in joy as they struggled to figure out what to do, eventually getting tired and dropping to the bottom where they drowned in the treasure that had called to them in the first place. And my hummingbirds were able to enjoy the feeder that was meant for them in peace.

Not only that but Ray was able to find the nest and give it a good spray with wasp killer, so hopefully, we’ve eradicated them and won’t have to deal with their swarming any longer. Another cause for Joy.

The hummingbirds make me happy. Their energy and the buzz their wings make when they’re at the feeder brings a smile to my face every time. The colours they wear on their jewel-toned bodies flash in the sun, and each one brings a bright start to my day. In the same way, a good cup of coffee and a cuddle with my cat Dorie starts the morning off right, even if I haven’t had much sleep at all.

I think that often, people with Chronic Pain forget that it’s okay to feel joy. We’ve been so used to feeling the negative emotions that come with being in pain all the time that we forget there are positives in our lives as well. When you hurt, your focus is on the hurting. There is often desperation around pain because it’s never-ending. We can have a tendency to catastrophize it with phrases like “I’ll never get better” or “this is the worse pain I’ve ever had” yet when good things happen, we don’t do the same thing: “this is the happiest I’ve ever been” or “I’ve never been so happy”. It’s almost like we’re afraid to accept the joy in our lives for fear it’s going to go away and we’ll never experience it again. The thing is, we make our own joy, or we find our own joy…nobody does it for us. So, if you want joy…you have to look for it. Think about it for a minute…what are some things that might bring joy into your life? Here’s a list of 20 items that might get you started:

  1. Watch a sunrise or sunset
  2. Send someone you love snail mail
  3. Volunteer
  4. Get crafty
  5. Bake something
  6. Keep a journal
  7. Take a walk
  8. Do a good deed
  9. Read a novel
  10. Go to the museum
  11. Sing
  12. Take a class
  13. Enjoy a power nap
  14. Log off Facebook
  15. Practice positive affirmations
  16. Mentor someone
  17. Plant a garden
  18. Have a warm bath
  19. Go to an art gallery
  20. Give more compliments

Most of these ideas cost nothing but reap huge benefits in the joy department, and you deserve them! Not only that, but the more joy you bring into your life the more you fire up the endorphins that release the body’s natural painkillers, so you’re physically doing good to your body as well as mentally doing good to your body. That’s a 2 for 1 special you won’t find in any store!!
You are worth every joy possible. With everything your body goes through on a daily basis, it’s natural to feel beat up and unworthy of happiness. Those are your brain weasels talking. Brain weasels are the voices of depression that come with chronic pain and those weasels lie to you all the time.
brainweasels.jpg

They don’t want you to be happy so they’ll tell you all sorts of lies to try and convince you that you don’t deserve joy in your life, but THEY ARE WRONG. You have every right to be as happy and joyful as the next person. So take a chance on happiness EVERY chance you get and see if it doesn’t start your day off on a better note. And tell those brain weasels they can go the same way as the wasps!

There is always hope!