Dear Diary: Fibro Fog Fun Part I

Fibro Fog. It’s been one of the toughest symptoms of Fibromyalgia I’ve had to come to terms with.

Dr. Ananya Mandal states in this article that: Studies have shown that over 50% of patients with fibromyalgia suffer from mental confusion and decline of memory and mental faculties. Mental confusion along with difficulty in concentration and loss of memory is often termed “fibro fog”. These features are termed cognitive dysfunction and include common manifestations such as:

  • forgetfulness and memory problems – tests reveal that the memory components affected include impaired working memory, episodic memory and semantic memory – they have a poorer free recall
  • concentration difficulties and attention problems
  • poorer verbal fluency and verbal knowledge
  • difficulty in focussing
  • impaired judgement
  • impaired ability to perform simple cognitive tasks
  • slowed or altered speech and other speech problems

No Shit!

As a writer and strategist, words, ideas, strategies, quick wit, sharpness etc., has always been my thang. Kind of what sets me apart, you know. My talent. Fibro Fog has left me feeling like a crucial part of what makes me….me….has been ripped away. This has contributed immensely to my depression and anxiety. I have shied away from a lot of friends, colleagues, events etc. because I haven’t wanted people to see the new me, which often feels like a shadow of who I was. Embarrassed, shame, feeling like a failure…it’s all part of it.

This fall when I started seeing my shrink, we decided I needed to start clawing back this piece of who I am. Testing my limits. Pushing harder. Learning to accept my new state of being with no anger or judgement. Working with what I’ve got. Writing and getting back to blogging is playing a big part in this. The other thing I’ve started doing is verbalizing my cognitive struggle so that A) I don’t cower in shame over my cognitive disfunction (I think this is playing a big role in acceptance) and B) people around me have a better appreciation for what’s going on inside my head.

And come on, let’s be honest, I’d rather find a way to laugh at myself with love and compassion rather than getting angry or depressed about it. It is what is…let’s find a way to embrace it and….laugh at it! And that’s just what hubby and I’ve been doing…laughing!

Last week hubby and I were watching TV and a commercial came on for Little Caesars Loaded Crazy Bread Bites.

Yummy right! Here’s how the conversations went.

Me: OMG I want to try those. I wonder if they taste like those….things…you know…the things I like so much from….that place!

Hubby (giggling): Ummmm…nope…no idea!

Me: Fawk…you know…the things….from….St. Mary’s???

Hubby (giggling harder): St. Mary’s…like the street????

Me: No, no, no…you know…the….jumba jumbas from…Smitty’s???

Hubby (nearly rolling on the floor): jumba jumbas???? Not ringing a bell. And we don’t have a Smitty’s any more…

Me (starting to giggle at the insanity of our convo): I know….shit…it sounds like Smitty’s I think…jumba jumbas…fawk…

Hubby (near tears): Babe I’m trying to figure it out but jumba jumbas are not sounding familiar.

Me: Fawk, fawk, fawk…it’s like right there…but I can’t seem to grab it…St. Mary’s, Smitty’s….fawk!

About two or three minutes go by as hubby turns his attention back to the TV, clearly giving up on this mystery while I continued to ponder and mumble. Out of the blue it comes to me!

Me: AHA!!! East Side Mario’s…..Bada Boomers bread sticks….

Hubby: You honestly thought I would be able to get that from Smitty’s, St. Mary’s and jumba jumbas….

Me: Well, I think the link was there. Phonetically???? Makes perfect sense to me….

We both roared laughing. I told hubby it gave him another good one to share with his colleagues at work. A glimpse into the world of living with someone with Fibro Fog. The fun never ends around here! 🙂

Happy day!

Natalie

Dear Diary: I Found The Secret…Again

Thank You Picture

First, I’d like to start out by giving a big shout out to my new subscribers! Welcome. Hope y’all enjoy! And thanks everyone for the comments over the last couple of posts. You guys rock!!!!!

I woke up this morning at 7 am super groggy. I’m fighting a cold so last night, along with my regular medication routine, I added a flexerol (you know…the little yellow houses) and two Buckley’s nighttime. Shabam!

After feeding the pups, all I wanted to do was crawl back in bed and sleep the day away. But my OT was pretty adamant last Friday that I try very hard this week to stick to my schedule. So at 8:30 I drug my sorry body outside for my 13-minute walk up and down the driveway. It’s such a crisp and bright morning, the walk certainly helped wake things up. When I came inside, instead of letting the call of the bed snag me, I went into my office to meditate.

I am happy to report that I feel much more energized and so far, morning routine is on track. #rockstar

This morning’s meditation was a new one for me, and it turns out it was a great reminder that I’ve wanted to write this post for awhile. Unfortunately, I can’t link to the meditation because it’s not available on YouTube. It’s by Dr. Joe Dispenza, who I got turned onto when Mom started teaching me how to meditate. She and a group she meditates with are following many of his programs. I’d take a crack at explaining his approach but you’d be better off reading his About page since it’s a wee bit complicated.

I am doing his morning and nighttime meditations for the next little while. They are about defining a vision of the future instead of a memory from the past. And although Dr. Dispenza talks about frontal lobe and activating different parts of our brain etc., I realized that the essence of his ideas aren’t unfamiliar to me.

Most of us have watched the documentary or read the book, The Secret by Rhonda Byrne. Or the more academic version, The Power of Intention by Dr. Wayne Dyer. When a friend of mine, Kelly, first started reading my blog posts earlier this fall about what I was going through, she messaged me asking if I had read the Secret, and she told me how it had completely changed her life.

I had read the book a number of years ago when the popularity of the theory seemed to be every where a person looked. And frankly, I thought I was still living the ideology. But I had never seen the documentary and thought I’d give it a whirl. Turns out I haven’t really been living the power of intention at all.

I have been living in the present and the past. Like most of us, yes, I think about the future and what I’d like or hope for but other than fleeting thoughts and ideas, my main concern has been rooted very much in the present and even the past. Pain, depression, anxiety and fatigue have a way of doing that to a person. Without even realizing it, you become entrenched in it.

The meditation was a huge reminder that in order to manifest the future I want, I need to:

  1. Ask the universe for what I really want, specifically and in the present tense.
  2. Believe it is already mine with unwavering faith.
  3. Receive it…feel, as deeply as I can, as if it’s the here and now.

Fantasy to Fact!

In my meditation this morning, Dr. Dispenza led me through an exercise of visualizing future moments that are representative of where I want to go. I pictured hubby and I on stage addressing a huge crowd of folks with laughter, tears and inspiration. I saw us together taking selfies with people and signing books. I saw myself writing…words flowing easily and freely from my mind to the pages of my next book. I played the scenes over and over in my mind.

Then, with Dr. Dispenza’s prompting, I conjured deeply how those moments would feel. Experiencing the emotions, feelings and senses as if I was there. Living and breathing it. For real. The sense of awe that comes from touching the hearts of so many people. The feel of the stage lights, warm and intense, and the echo of our voices through the microphones. The joy that comes from sharing laughter with everyone in the room. The humbled feeling of privilege, honour and respect from sharing our story. A deep hope and desire that we helped even one person.

We finished off the meditation manifesting feelings of deep gratitude and appreciation for this visional life. I gotta say, it was intense, wonderful, empowering and uplifting. I can’t wait to try the nighttime meditation tonight. Stay tuned.

My struggle with the power of intention or the law of attraction is living it every day. Like most of us, I fall into old thought patterns focused on the here and now; the struggles and even the wins. The future feels like some distant thing that I likely have no real control over. I get wrapped up in the day-to-day and forget to consciously work on manifesting the future I desire.

I am reminded of the sayings from last week ‘what you focus on, grows‘ and ‘ what you resist, persists‘. Applied realistically, that means when I live focused solely on what’s going on right now, I put it out to the universe to send me more of that. Well today that would be grogginess and pain. Ohhh sounds fun…not!

I do believe the theory that my thoughts and emotions have an energy in and of themselves. What I think and feel emits out of me sort of like a scene in a movie when a superhero flies and hits the ground and you see the ripple effect of energy being displaced.

Gratitude exercises are rooted in this idea. By taking stock every day of the things I am grateful for, and embracing that feeling of gratitude and deep appreciation, I intentionally put it out to the universe to bring me more of that good stuff. But what if I can take that a step further and actually manifest my best future? My wildest dreams? My deepest desires? Well now…that’s pretty interesting!

Heck…I mean it’s worth a shot right! #youbetcha

Yesterday’s Meditation:

Today’s Tunes (really digging the Fifty Shade soundtracks for writing inspiration):

Happy Day!

Natalie

 

Dear Diary: Pain Is My Friend

What we resist, persists.

What we focus on, grows.

Now that I’ve been seeing a shrink, I have started thinking a lot about my relationship with pain. I have to admit, it felt strange at first. A relationship with pain? Isn’t it just what is? Do I honestly have any control over pain?

The answer surprisingly came to me in an “aha” moment when I thought about the above two statements in relation to how I feel about pain. Honestly, I hate it. I mean, who doesn’t? It’s pain for God sakes! Beyond that, I am angry about it. I fight it. I rail against it. I push through it. I show it who’s boss (or so I tell myself).

But….by being constantly focused on how much I hate pain, how much I have lost, how much I feel limited, could I be contributing the consistent persistence of the pain? Even contributing to the intensity? Are my thought patterns and feelings about pain making things worse?

Don’t get me wrong, I realize that I can’t “think happy thoughts” to a cure (working on acceptance…more on that soon) but what if I can reduce my pain by improving my relationship with it? What if I can improve my quality of life by…embracing…pain? Is such a thing possible?

There’s really only one way to find out. Change the thinking game and see what happens. So I am trying to see my pain as my friend. My constant companion. My partner in crime.

Pain in a very important guidepost in life right now. It plays a very pertinent and crucial role in telling me when I am starting to hit my limit. If I listen to it and respect it, it can be a powerful tool and friend to help me ensure more good days than bad. On the other hand, when I give it the finger and tell it to pound sand, it generally smacks me upside the head and knocks me on my ass with bad day after bad day.

Just like my BFFs, my pain doesn’t pull any punches. It’s raw honesty. It doesn’t play games or manipulations. It speaks the truth, and it always give me the oppportunity to have my say. Sometimes it will compromise. Other times, it will draw a line in the sand but, as I am starting to learn, never for some arbitrary reason.

I am learning to trust it. I am learning to appreciate the role it’s playing in my life right now. I am learning to think about it differently so we can thrive as best as we can in this body. I am learning to even love and embrace it because damn it, it’s part of me right now, and I am committed to loving all of me (now more than ever before). I am learning to walk hand-in-hand with it…trusting it, knowing it’s here for a reason.

And frankly, hating something that is with me every. single. day is exhausting.

I won’t say that every day I walk the BFF pain train because some days I still do want to punch it in the face multiple times…and some days I let myself wallow in anger or sadness over it. Some days are just too tough not to. But now, more days than not, I wake up and say hello to my good friend pain, who is always especially present in the mornings. We have a frank conversation about what’s on tap for the day and the week to come…and we negotiate…we talk it out just like good friends ought to.

Today’s Meditation (it was lovely):

Today’s Tunes:

Happy Day!

Natalie

Dear Diary: I Got a Booby Do

So the other night, hubby and I are hanging around the kitchen trying to pull something together for supper when he looks at me kind of strange. Eyebrows raised and with a playful flirt I ask him, “what’s up…you checking me out???

He stands there with a huge grin on his face and says “baby…you got yourself a booby do…

Excuse me…what in God’s name is a booby do???”

You know…when your belly sticks out farther than your boobies do

ROFL!

I’ll admit it, I went off the eating rails most of the summer. I was so dark, exhausted and in so much damn pain. Y’all know how it is when you feel like shit all the time, you seek comfort in whatever forms you can get it. For me, my choice of drug was Parlour’s Heavenly Hash ice cream (or as my bestie loves to call it…old lady ice cream).

And reach for it, I did. Daily. Sometimes for all three meals. I put back at least a litre, if not two, a day. Honestly, if I was awake, I was shovelling ice cream in my face. And it was comforting even if deep down, I knew that a) it wasn’t real comfort and b) it was short-term warm and fuzzies.

I’ve been off the ice cream crack addiction since September but I wouldn’t say I’ve been reaching for salads in its stead. This fall I did an elimination diet for about six to eight weeks, and I learned a ton but, with my pain and lack of energy, it was way too much to keep up. And early this winter, Mom and I took a plant-based cooking class and have talked about eliminating meat, dairy and eggs. Again, the idea of trying to learn cooking all new recipes etc. is daunting and overwhelming.

Interestingly, I talked to my shrink about it last week and she articulated that there’s really no research that shows a huge benefit in fibromyalgia symptoms from any one specific eating program. Of course, eating healthy, fresh, whole foods would provide benefits but what she said is it’s not a “cure”. She told me that for every pound of body weight, we put seven pounds of pressure on joints and limbs so losing a few pounds would likely help me feel “better” but it’s not likely to be life changing.

I am learning that I need to ask myself more often “are the benefits of this activity, given the potential costs, worth it?” Everything now comes up against an invisible criteria:

  • What will I get out of this activity? Laughter, happiness, relationship benefits, short or long-term health benefits that reduce pain, depression or fatigue etc?
  • How might I pay for this activity? Pain, exhaustion, depression etc?
  • What other activities do I have scheduled for the next few days and how might this choice impact those?
  • Is it worth it? Is the cost-benefit there?
  • And if the cost is too high but I really want to say yes, is there an accommodation I can make to lower the cost to make it worth it?

It’s about being a lot more thoughtful about where and how I invest my time and energy to ensure I’m putting it places where it counts instead of just saying “yes” to bullshit stuff that gets me no further ahead and actually sets me back. It’s also about looking at activities that I may want to do but I know are too high cost and evaluating if there is some accommodation I can do to lessen the cost. Now this may sound like pretty straight forward math to y’all but for me, this is really a new way of living. As a chronic overachiever, I am used to saying yes to about everything that comes my way and…somehow always making it happen.

Now I have to learn how to weigh decisions and be ok with saying no…and learn to say no without allowing myself to feel like a failure. This is no small task.

The trip to New York was one of those things that I knew the cost would be high but I also knew that the benefits would be worth it. I rested for the two days prior and ensured my calendar upon my return was supportive of my recovery with limited apts (one being my acupuncture and the other being my shrink knowing these two would aid in my recovery immensely).

A bus tour to see Celine Dion with my Mom this summer was another big event. Unfortunately, I wasn’t as adept to planning and it did cost me weeks to recover. However, it was still definitely worth it to have such an incredible mother-daughter trip…and the lessons I learned from that, I was able to apply to NYC.

Date nights with hubby that are more involved than watching TV together (that ain’t really date night…) I sleep most of the day of to gear up for it and possibly sleep most of the next day…SO worth it!

Cooking new and possibly extensive recipes that require a lot of standing and energy, I’m sorry to say, doesn’t sound like it’s worth it.

That being said, I do think moving to a healthier eating lifestyle would definitely be worth it. I just have to find ways to keep it simple or implement accommodating strategies like perhaps asking family or friends who love to cook to help with more involved dishes. It’s about learning my limits, putting my limited energy into high return things, and not being afraid to ask for help for the bigger stuff. It’s coming…stay tuned! 🙂

And don’t think for one minute I didn’t jab hubby back from his booby do comment.

I quickly followed with “well my darlin’ husband, if I have a booby do, you got yourself a dicky do cause your belly sticks out farther than your dicky do.

Finding the funny in the little things! Y’all know that’s how hubby and I role!!

Happy Day

Natalie

Dear Diary: Making Changes

Well y’all might notice a few changes around here, yet again. New header and new focus. But trust me, same flavour of fun. I’ve been reading a lot of blogs lately where people share their experience with fibromyalgia, and it got me to thinking about how I could use my love of writing through this journey to both help others and as a therapeutic measure. And although I won’t deny that a lot of what I am going through isn’t fun, y’all know hubby and I are using our shock and awe humour to help us cope, together. So along with the tears and torment, hubby and I plan to share here how we find the funny in our journey of learning to live with fibroymyalgia.

I say we purposefully because although I’m the one with the diagnosis, he’s having to learn to live with a chronic illness just as much as I am. Not to mention the family and friends who are having to do the same. So I’m hoping this will be a safe place for them to share as well to try and give readers not just a peak inside my world, but a look into the world of a support-system.

Hope ya like it!

Last weekend I hit New York City for the first time with my best gal pal, Jennifer. She won the trip, and we went to celebrate her 40th birthday. A quick trip, fly in on Friday and leave Sunday. It was a doctor-approved trip. Doc thought the change in scenery would help and given that Jen suffers from a chronic illness herself, I knew we’d take the quick trip with ease and flexibility.

We landed Friday late afternoon at LaGuardia (good lord, we thought we were doing a water landing) and after taking an hour to find our driver, we headed into the city. We stayed at the Waldorf Astoria on Park Avenue. What a gift it was to experience such an old and famous venue considering that Chinese investors have purchased it and plan to start renovations later this year. It was impressive to say the least. Felt a little like what old Hollywood might have felt like.

We checked-in and set out to explore.

St. Patrick’s took my breath away. I am not really a religious person but that cathedral was emotionally moving. Incredible. The top of Rockefeller Centre was stunning in the evening and really showcased the immense size of the city. But that skating rink is WAY smaller than it looks on TV. Those peeps should try some lake skating here in Canada. Afterwards we made our way to Trump Towers. Can you say security?!?! I’ve never seen so many large guns. Then it was to Grand Central Station, which is very grand. We capped off the night with Time Square, which was amazing to see in person after seeing it in so many movies. The billboards. Wowzers! We did manage to get accosted by Iron Man and Mini Mouse for photos.

Saturday we spent most of the day at the 911 Memorial site and museum. It was very emotional. I couldn’t believe the number of people that were there, and everyone was relatively silent. You could sense the raw emotion every where you went. We were both honoured to pay our respects. Saturday was capped off with a dinner at the steakhouse that BLEW our minds with deliciousness.

Enjoy some pics of the trip:

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I learned so much on the trip about how I am going to need to learn to alter my old travel ways to accommodate fibro. And isn’t that what it’s all about, learning how to LIVE as fully as possible with this invisible illness?! A quick weekend trip was an excellent way to explore travel with the new me. Here’s what I learned.

  • Plan for a light evening after travelling all day.
  • Buy or bring epsom salts for a soak at the end of each day.
  • Start taking Tylenol every three hours to stay on top of pain management – possibly increase anti-inflammatories from two-a-day to three- or four-a-day for the duration of the trip or at least on the most physically demanding days.
  • Looks at maps and attempt to plan out walking routes so they are efficient as possible.
  • Get roaming package for the iPhone so I can make better use of it when traveling around the city streets where there is no wifi.
  • Don’t be afraid to use the subway system. On Saturday we realized how amazingly easy it was and could have made much better use of it on Friday night.
  • Since sleeping in a flat bed, take more nighttime medications earlier to try and get as much quality sleep as possible.

All fabulous lessons for next time!

I am not going to lie, by the time we got home on Sunday evening I was in excruciating pain with a considerable limp. That left hip went into over drive. It felt like I had gone 10 rounds in the ring. Everything screamed. But before you ask, yes, it was worth it!

Came home and spent Monday and most of Tuesday in bed heavily drugged. Tuesday I had an apt with Brune Clavatte for acupuncture and massage, which was heavenly. On Wednesday, much to my surprise, my pain was under surprisingly better control and my energy was rising. That evening I had an apt with my shrink (chronic pain PhD), and I felt a lot lighter and less doom and gloom.

I was really surprised at how quickly I recovered from the trip. I think coming back and doing the treatment with Brune, seeing my shrink and having less pain-filled sleep as I was back in the “double-wide” (more on that to come) definitely helped me bounce back. When I did a bus tour with Mom to see Celine Dion in August, it took me about three weeks to recover from that but I was back in my gravity chair and had no other support system in place to help with recovery like I do now.

On Thursday I had an apt with my Occupational Therapist (OT), Courtney, from the Foundation Health Centre (multidisciplinary health centre that LTD is paying for). Until now, I had no idea what an OT really does but they are fabulous. She’s coordinating with my shrink to help me put into practice things to start reprogramming my brain and how it relates pain to everyday activities now. To start, we are incorporating routine back into my life. So as of now, every week day, I am to walk the dogs for 10 minutes, rest and then write for 30 minutes (journal, blog etc.). As well, we are working to create a bedtime routine that will hopefully help me get better sleep. Mediation at 10:30 pm followed by getting in bed with a heating pad and reading. Eyes closed by 11:30 pm. Weekends footloose and fancy free. I’ll keep y’as posted on how it’s going.

Before I close, can I just tell you how much I am enjoying meditation. Mom, who we now know is always right, has been suggesting I try meditating since I was a young teen. I wish I would have started sooner. What an incredible thing! Thus far, it gives me some of the best relief (and it’s all natural and FREE).

I started with Mom in the fall but sort of fell off over Christmas. This weekend I meditated yesterday afternoon and found huge improvement in my pain and energy that lasted the entire day. WTF?!?! I did a mindful meditation for pain relief by Jon Kabat-Zinn. And this morning, before sitting down to write this post, I did a 40-minute meditation I found on YouTube. It was hypnosis for self-healing with Michael Sealey, and, again, I feel much more awake, pain is more in the background and I’m tremendously peaceful.

That’s about it for the update.

Today’s Meditation:

Today’s Sounds:

Happy day!

Natalie

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