May 12th Is Fibromyalgia Awareness Day

May 12th is (1)

Fibromyalgia is a Chronic Pain disorder that affects millions of North Americans and others around the world. People who live with this condition experience widespread pain throughout their bodies, along with a host of other symptoms. Sufferers are diagnosed by the “tender points” they have developed over their body as per this illustration:

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In recognition of May 12th, Fibromyalgia Awareness Day, I wanted to share with you a post from the past. It’s titled An Attitude of Gratitude. I wanted to put a different spin on having Fibromyalgia because so often, we focus only on the negative side of illness. It’s natural when you’re chronically ill, but there are reasons to be grateful as well. Read on to see what I mean:

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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 four doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston, Dr. Wilson 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!

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So, what are your thoughts? Were you surprised at how easy it can be to be grateful? It’s not hard to make a list like I did, and I highly recommend that people give it a try.  We live in a busy and scary world, and this is also a good way to take back a bit of control over the craziness. 

Cultivate an Attitude of Gratitude and see how things change in your life. Even if you don’t make a list, there’s one thing you can count on…

There is always hope

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What It Memes To Have Chronic Pain

They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:

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There is always hope

The Gifts From Chronic Pain

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Living with Chronic Pain is no picnic. Intractable pain day after day wears down the body, the mind and the spirit and it can be extremely difficult finding anything good in the experience, but I have found a few things I wanted to share with you. Remember, these are my own personal thoughts.

  1. If you’re a spiritual person, it can deepen your faith. Now, in all honesty, Chronic Pain with no resolution can have the opposite effect and have you turning away from your Higher Power because you haven’t been healed, but I tend to think in the positives anyway. I believe that having Chronic Pain helps you to draw closer to your Higher Power as you find something…anything… to cling to when times are bad. God is an excellent listener and doesn’t mind if you yell at Him – He already knows you’re doing it, so what’s the point of pretending. Go ahead and be angry at Him. Yell, rant, rave, swear…do whatever makes you feel better. He can handle it. And then when you’re done, take a moment to thank Him for listening to you without judgement.
  2. You develop inner strength. Nobody develops inner strength like a person who lives with Chronic Pain. As the hours and days and years go by and nothing about your physical situation changes, there is resilience. It’s the necessary component that allows you to pick yourself back up after setbacks and keep going. To say to the world “I’m not done yet”. It’s the part of you that refuses to give up when others might say “it’s too hard”. Only you can determine your own resilience and whether or not you can keep going, but so far, you’ve had a pretty excellent track record to keep going. You are brave.
  3. Patience really is a virtue. In a world where everything needs to be had RIGHTNOW!! patience seems to be an old-fashioned quality. A person with Chronic Pain learns about patience very quickly – an oxymoron if ever there was one. You wait for appointments, you wait for doctors, you wait for your pain to subside, you wait for tests, you wait for results, you wait to feel better, you wait for answers, you wait, you wait, you wait. Depending on how complex your situation is, there may be several doctors involved in your care, so you wait for all of them to coordinate their schedules to see you and treat you. You wait endless hours for flare-ups to subside. For sleep to come. For pain to stop. For nausea to disappear. For bones to heal. And in all of this, you learn patience because you have no other choice.
  4. You finally have time to… When you’re feeling up to it, you finally have time to do those small things that you never had time for earlier: watch a favourite show on TV, read a favourite book, phone a friend for a chat, go for a massage, get your hair cut, organize the junk drawer, clean up the hobby room, work on a craft, write a letter to send via snail mail, look up a simple recipe to try that isn’t exhausting, order some flowers, send a love note to your spouse, go through your kid’s baby books or old photos, play a computer game, take an online course, go to an exercise class…the list is as endless as your imagination.
  5. You’re forced to slow down your pace. If you’re anything like me, most people with Chronic Pain or an Invisible Illness probably were Type A Personalities at some point in their lives – always on the go, go, go. If you were a doer who was always busy before, you’ve been given a gift to slow down and appreciate life around you. I became fully disabled in October 2009 but probably should have gone on disability about 2 years sooner. I had to really push through those last 2 years, to the point that I often lost the thread of a conversation right in the middle – I wouldn’t have a clue what we were talking about. I couldn’t manage more than one task at a time when I was famous for my multi-tasking abilities and I would jeopardize safety in firefighting drills by not remembering the steps to take to get out safely. By taking Disability and being forced to slow down, I was able to regain those skills again, in a more family oriented situation.

What gifts would you add to this list that you’ve received since experiencing Chronic Pain or Invisible Illness? Does this list ring true for you? Leave a comment below and share your thoughts.

There Is Always Hope

Let’s Find Out If Fibromyalgia Is Real.

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia IS REAL.

Here are just some of the MANY symptoms that people with Fibro have reported experiencing:

Fibromyalgia-Signs-Causes-and-Treatment

Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all
18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.

Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.

Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me.

But, as I always say…

there is always hope!