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/

Fibromyalgia and my Spiritual Beliefs

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I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:

Do you have spiritual beliefs that help you cope with living in this hell?

Before I answer, let me ask you a question. If you live with Fibromyalgia, Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”?  What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?

I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.

I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first.

So, in regards to the question that was asked, yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes Chronic Pain and Chronic Fatigue from the many conditions I live with. Have I ever asked God for healing? Yes, I did once. I prayed:

praying-hands

“God, if it be Your will, please remove all sickness from my body and return me to good health. If you leave my body the way it is Lord, then please give me the right attitude to learn to live with the pain and fatigue that I experience. Please help me learn to not complain because I know that there are so many other people out there that are worse off than me. Give me an attitude of grace, help me to be humble, let me have patience and let me always be of help to others so I’m not always focused on me. I know I can be selfish and self-centred so please help me to change that part of me, God. Make me a better person than I am today. Help me in my relationship with my husband because I know this is going to make things tough for us. Thank you God for everything you’ve done for me, let me always be grateful to you. Amen”

God’s plan for me was obviously not to heal me, and in fact, my health has become worse in the 5 years since I said that prayer. Am I bitter? Not at all. None of us has ever been promised anything. Why shouldn’t I have health problems? Why not me? What have I done to make me so special so as to avoid bad things?? Nothing. I’m just as susceptible as anyone else, and I know that. And I think that’s where acceptance comes in. I’ve accepted that this is what my life is. I probably will not be healed on this side of Heaven, and that’s okay. I DO know that I’ll be renewed IN Heaven according to my beliefs and that’s a comfort to me. I can put up with what happens in my life because I know the promise I have for Eternal Life in my future.

And that is how I cope. I cope because, for me, I can see beyond what happens to me on Earth. My spiritual side believes in Life after Death, and in an Eternal Heaven, where my body will be renewed. There will be no pain and no sorrow and I will be free of everything that troubles me in my Earthly life. There won’t be any more Chronic Pain or Chronic Fatigue, my body will finally be free of all restrictions and for that, I can withstand whatever it is that I have to go through while I live my life here.

What about people who don’t have a Spiritual belief system? What about the people who don’t believe in an Afterlife, a Heaven or Garden of Eden? What happens to them?  Well, according to MY beliefs, anyone who doesn’t accept Christ as their Savior goes to Hell. According to THEM, they likely believe that nothing happens when they die; that there is nothing after death. We could delve into a huge discussion of Theology now, but my point is, without some type of Spiritual belief, what in the world are you living for??

My Spiritual beliefs are what keep me going. That promise of Eternal life is what I cling to when I have days of intractable pain. When I think I can’t possibly handle another new condition or illness and God decides otherwise, I have no choice but to hold on to the hope of Heaven

One of my favourite Bible verses comes from Jeremiah 29:11 (King James Version)

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

That is exactly what my Spiritual beliefs do…they give me hope and a future, knowing that something better is coming. It’s also the reason why my blog is named There Is Always Hope. I believe it to be true, both here on Earth and onward in Heaven.

I hope you, the reader, have a Belief system too. It may not be the same as mine, but I hope you have something to believe in. Something that helps you get through whatever life throws at you. Something to cling to in the dark hours.

What do YOU believe in? What ARE your hopes when all seems hopeless? How DO you manage in times of trouble and crisis?

There is Always Hope

#FibroQuestionsAnswered

Guest Post – Mary Gutierrez

I am pleased to share a post by a Guest Blogger today by the name of Mary Gutierrez
Mary just published the following article and I thought it was important enough to feature here:

Mental Health Advocates Share How To Prevent Suicide in 60 Seconds

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

Image from Pixabay

I was flipping through my new SoulPancake book when this question jumped off the page.

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.

So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.

I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.

Here’s What They Shared

  1. “The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
  2. “I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
    What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
    I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — 
    Selena Marie Wilson
  3. “What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
  4. “ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
  5. “I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
  6. “There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
  7. “Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
  8. “A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
  9. “As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
  10. “Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
  11. “What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.”  Chasa Fulkerson
  12. “The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
  13. “Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
  14. “This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
  15. “You are needed. You are necessary. You are loved.” — Barbara Moore
  16. “That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
  17. “Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
  18. “Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
  19. “You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
  20. “I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
  21. “There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
  22. “Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
  23. “Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
  24. “Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
  25. “Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
  26. “It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
  27. “You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
  28. “Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
  29. “Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
  30. “Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
  31. “I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
  32. “The Universe Thought You Were A Good Idea! So Hold On Tight And Stay, The Sun Is Coming For You! You Are Loved And You Are Needed In This World!” — Kristal @ The Fibromyalgia Pain Chronicles
  33. “I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
  34. “I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter

Your Turn

How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.


If you liked this post, you might also like the Spoonie Secrets series. It’s a safe space for people with chronic illness where they can share their deepest and darkest secrets anonymously. Check out the first issue here.

https://medium.com/@mary_gutierrez/mental-health-advocates-share-how-to-prevent-suicide-in-60-seconds-94ac2f0c97ce
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.

An Attitude of Gratitude

Are you grateful for your life?  Are you grateful for the things you’ve been given? Are you grateful for Chronic Pain and Chronic Fatigue? What about your other Invisible Illnesses? For Fibromyalgia? I am, and let me explain why.
I have had my Invisible Illnesses for over half my life now, and they have been a predominant part of my life since 2004 when I went into a major flare that I’ve never recovered from. That was the year I had stomach surgery for severe Gastric Reflux disease – a procedure called a Nissen Fundoplication. The surgery itself was successful, but I suffered nerve damage in the sternum area from where an instrument being used was pressed too hard against a nerve for an extended period of time, causing it to be pinched for over an hour. This caused me excruciating pain that didn’t resolve for almost a year and had me addicted to morphine pills to the point that I was hallucinating. In fact, at one point, the general surgeon called in a Thoracic surgeon, who was going to crack open my sternum to try and fix whatever the problem was – a drastic solution indeed.
I’m grateful this didn’t happen and the Thoracic surgeon had the sense to suggest a drug called Gabapentin for nerve damage which is what he suspected was the problem, and he was right.
I spent almost a year in a hunched over position, trying to “contain” the pain, it was so bad. I ended up having to go for physical therapy and massage in order to loosen up my muscles to where I could stand in a straightened up position again.
I’m grateful for the therapists that helped me.
I’m grateful there are medical teams in place when we need emergency surgery, such as when a cyst I didn’t even know I had on my ovary burst, causing me horrid pain. It needed immediate removal and there was a team to do that. Just like there was a team to remove my gallbladder and my other ovary when it went rogue as well.
And I’m grateful for my three doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston and Dr Burnett, my orthopedic surgeon who did my hip replacement.
Okay, you say…it’s easy to be grateful to the people who help us, but how can you be grateful for having Chronic Pain and Fibromyalgia and all the other stuff. Well, I’ll tell you.
When you have Invisible Illness, you tend to miss out on a lot of life. You may have to give up your job or volunteer activities, your hobbies and family life. You end up losing a lot more than you seem to have left. But what having a Chronic illness does is force you to dig deep to FIND what you’re grateful for. I made a list:

  • Sunrises and sunsets
  • Quiet mornings after a good sleep
  • A perfect cup of coffee
  • A day where the kids get along and no one is fighting
  • A day where the cat or dog doesn’t barf all over the place
  • Feeling energetic enough to accomplish a few things on the “to do” list
  • Feeling rested
  • Feeling less pain than normal
  • Being able to go for a coffee date with a girlfriend or two
  • Having dinner with your family together instead of needing to lay down
  • Date night with your spouse
  • Watching a movie together instead of early to bed
  • Having a bath or shower
  • Having enough food on the table and money in the bank
  • Laughter
  • A sense of safety and security
  • A roof over your head
  • Feeling loved
  • Having a close friend you can confide in
  • Books to read and art to admire
  • Social media like Facebook and Pinterest
  • Ice cream or a favourite treat
  • Family and friends to share memories with
  • Vacations

I could go on and on…the point is, there is so much to be grateful for, but when you live with Chronic Pain and Chronic Fatigue and Invisible Illness, it’s easy to get stuck wallowing in the negatives, to the point you forget to stop and remember to be grateful. Take a moment now to list a few things that you’re grateful for and make it a habit each day to say thank you. An Attitude of Gratitude is easy to cultivate, but like a good garden, you need to tend to it every day.
Remember…
there is always hope!