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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Chronicles of an Ice Pack Queen

So the battle continues. It’s been about a week and a half since my last post and not much has changed. The rib pain and I continue to do our dance. It’s driving me bonkers and making what little gains in sleep I had been getting (amen to four hours in a row) regress back to two or three hour chunks. The interesting thing is the ice packs and heating pads both feel good when they are on but they both provide little long-term relief. Such is life. I am either freezing or sweating…

I did make it to meditation with Mom this week, and I still can’t believe how much I enjoy it. I am not really good at it yet, but it’s a wonderful practice. I feel very “relaxed and zen” afterwards…like I’ve had a deep rest. I can see how working this into my daily life at some point is going to be incredibly valuable.

Also hit the gym with Jen once. It was super light. A little bit on the more horizontal bike, some light weights on the circuit and then as a reward….hydro therapy massage bed. O.M.G. That thing is amazing. I use it as my motivation to get to the gym.

I also had a call from long-term disability, which was good in the sense of my file moving forward but stressful at the same time. Hubby actually saw great humour and irony in the fact that they called the cognitively impaired person to have her talk extensively, and with great detail and articulation, about her impairments. I hadn’t thought about that until he mentioned it. I was comfortable knowing the call was coming and felt completely equipped and ready but after I told hubby about the conversation, I realized that I may not have been the right person to ask.

I didn’t tell her how I used to love to get up in the mornings and spend a 45 minutes in my beautiful “get ready room” putting on makeup and curling my hair. I haven’t touched a blow dryer, curling iron or straightener since the end of June and haven’t shellacked my face even once…sniff….And, if I am being honest with y’all, cause you know that’s how we roll, I rarely even brush my hair. I just tie it up on the top of my head. Hubby said he’s see it down once this summer, and I didn’t even style it, I just brushed it. Sad.

I didn’t tell her how I used to love to take a nice, luxurious bath every single night. It was my thing. The idea is now overwhelming. When did taking a bath get over-fawking-whelming??? Getting in, washing, shaving, climbing out, drying, moisturizing…..I. Just. Can’t. I take a bath once a week now, and it’s usually on laundry day when hubby wants to wash my gym pants. I live in the same pair (and same shirt) day and night until laundry day when Hubby says they can stand on their own and enough is enough…

I didn’t tell her how I used to golf and how deeply I loved it but haven’t seen a green this year…haven’t felt the glove in my hand, the connection to the ball, the FUN and laughs Hubby and I used to have. And how I would normally be gearing up with excitment for a winter season of snowmobiling, downhill skiing, cross country skiing and snow shoeing. Instead I am gearing up to sell our snowmobiles because I couldn’t go even if we had enough snow.

I didn’t tell her about the many family events and activities I’ve had to enjoy via photos on Facebook after the fact instead of attending in person because I am in too much pain to attend. It broke my heart to miss this year’s annual pumpkin carving day…I sit home and cry…I feel like a failure. I feel like I am letting everyone down, all the fawking time, but I don’t know how to make it better and even if I did, I am not sure I’d have the energy, or smarts, to make it happen.

I didn’t tell her that Hubby (and very close friends and family) talk a lot about how different I am, both in personality and in how I look. How my spark is gone. How droopy my eyes are. How gray my skin can get. How overwhelmed and exhausted I look. And the celebration we have when I have a day where I seem more alert. My God, I used to be ON FAWKING FIRE and now “being alert” is a win. WTF!

She asked about hobbies, and I told her about my blog and how much it helps. But I didn’t tell her that what used to take me an hour or two to write, now takes me three or four days. The struggle to find words and sentences to string together to express how I feel and think, something that used to come to me as naturally as breathing, now takes exhaustive effort (and extensive rewrites). Must I lose this too?

I didn’t tell her about how insane my brain feels like inside. How it’s on some kind of frantic loop, ALL THE TIME! When I  think about something (like groceries I need Hubby to get, a bill I need to remember to pay, or something I want to research), how it plays over and over and over and over and over and over in my head. And that as soon as I stop and try to make said list, do the research or pay the bill, as soon as I stop to DO IT, it disappears…POOF…and I am left with a thread of something I know I needed to do…but  can no longer remember. I mean, we’ve all experienced that from time to time but this is like your every-so-often experience just snorted fifteen lines of cocaine. Somedays I wonder if I am losing my mind. Is this what going crazy feels like?

I didn’t tell her that I have to watch TV or read to the point of exhaustion so that I can shut my brain off long enough to ignore the pain and the racing thoughts so I can fall asleep. It’s this endless loop of OCD insanity about shit I don’t even care about. Honestly, I’ve always found great comfort in talking to myself but now I can’t shut myself up. WTF?

I didn’t tell her how every day I feel like I lose a little bit more of myself and that I am starting to wonder if I’ll ever get it back. Or that I am barely keeping the question of “what will you do if this is it…if this is your life here on out…” at arm’s length because if it comes any closer, I am terrified I will shatter into a million pieces and lose myself completely.

Hubby asked why I didn’t tell her all of that (and more…) and honestly, when put on the spot, I just don’t have the cognitive ability to pull it together. I needed time to think and ponder the questions, consider the information, talk to Hubby or Mom to get their perspective. Information, knowledge and understanding that used to be accessible in a split second now takes hours or days to process, make sense of and put together.

But also, I think it’s something we are either naturally tuned to doing or maybe it’s part of how we are raised. I feel like it’s in our nature to downplay how shitty we feel, how extensive the impairments are and the true impact of life’s challenges on one’s life. People ask how I am doing all the time, and I say “the same…still fighting the good fight…” and I usually move into either talking about what new thing might help or I move the conversation to them. But don’t we all do that, to some degree anyway?

Your coworker or bestie fires you a text to ask how you are and frankly, you’ve had an all star shitty morning…got in a fight with your man, your kids were grating on your last nerve, you had terrible night sleep, got some kind of weird kink in your neck, you didn’t have time to eat and you have a deadline hanging over your head but you reply “not bad…you? Wanna do lunch this week and catch up?

I mean honestly, when people ask me “how are you?” do they really want to hear the same shit, every time…that I am still drowning in pain, that there is never, ever a single fawking moment in the day where I am without pain humming through my body…how every single time I wake up from sleep, it’s from that pain literally vibrating through my body…in my feet, my ankles, my calves, my thighs, my arms, my back, my neck, my ribs etc…and that it never stops. That medications help take the edge off but nothing stops the pain. That I am so deeply depressed that it’s getting harder and harder to honestly care if I’ll ever get better.

Instead I hit the high points. Had four hours sleep in a row a couple days ago, the rib pain is still pretty nasty but I’m getting through it, and starting to look at a plant-based diet to see if that helps…

Frankly I think it’s a coping mechanism too. I reread this post and shuddered. I could EASILY drown in self pity, frustration and anger if I sat and thought about what I’ve lost thus far, how far I’ve fallen, and the fact that we don’t know when, or even if, I’ll get my old self back day in and day out, every day. Mother of God! I have to keep it high level, not just with other people, but I guess with myself as well, so that I can hang onto what little will and motivation I have to keep pushing. Pushing to try a better diet, to try meditating, to call the chronic pain guy, to reach out to see a psychologist, to try to get out of the house a couple times a week, to take that bath once a week…

If I didn’t, I’m not sure I’d ever get out of this gravity chair again.

Natalie

Chronicles of the Dark & Desperate…Part 2

First I’d like to say a HUGE thank you to everyone who is following the blog, leaving comments here and on Facebook, the messages and texts I’ve received with love, support and encouragement. I am so blessed to have you all in my corner!

Highlights:

  • Weight: 201
  • Pain: 
    • Left Ribs: 10
    • Lower Back: 6
    • Feet & Ankles: 3
    • Legs: 2
    • Left Arm: 2
  • Migraine: Monday & Tuesday
  • Water (116 Ounces Daily): No
  • Eating (According to The Plan): No

I saw the Doc Monday morning. I had a complete breakdown in her office. Understandable given my pain level in my left ribs was through the roof, I had a couple of migraines and had slept very little. I was very much still in my dark place.

She immediately sent me to the hospital for X-rays on the ribs. I didn’t really see the point, given my experience, I knew it was highly unlikely anything would show up and what do they do for injured ribs anyway? But I went up and haven’t heard from her so?! She’s also sending me for another complete blood panel since my last one is six months old.

She increased one of my antidepressants, Cymbalta (also on Citalopram). She added a pain medication to try, Tramadol. It’s not narcotic, so I was willing to give it a try. And I am continuing with my anti-inflammatory, nighttime meds and my muscle relaxer.

More prescriptions. More drugs. Disappointing but not surprised. I know it isn’t the long-term answer but I do know right now it’s necessary or I’d lose my mind further than I already have.

So yesterday was another very dark day. I cried most of the day. I felt hopeless, defeated and I wallowed. We’ve had a ton of break ins in our neighbourhood this year, and, as I drove in the yard, I was actually hoping the bastards were there so I could just beat the shit out of somebody. I’m angry. So fawking angry. I’m frustrated. I feel like screaming at my body in a mirror to shape the fawk up. Instead I ate McDonald’s and pizza and basically allowed myself to just throw in the towel.

Monday night I slept on and off in two/three hour chunks. And today, much the same. Even though it was broken, the sleep definitely helped take the edge off my overwhelming emotions. I don’t feel quite as down today. Unfortunately, I am not finding any relief from the meds the doc prescribed…at least not yet. I’ll keep taking them to see if a cumulative approach offers any relief. The migraine has also continued to stock me most of the day and evening. Damn it.

On a positive (because many of you fabulous peeps reminded me to find the wins, no matter how big or small), my aunt Andrea reached out after reading my last post regarding trying a plant-based diet next. Her and my uncle Jack have been doing a plant-based diet for two years now and are experiencing tremendous success. Uncle Jack told me about the amazing results he’s experienced fighting his fibromyalgia with his approach.

So instead of stalking potential thieves in the neighbourhood, I clicked on everything aunt Andrea sent, and I watched a couple documentaries on Netflix that totally blew my mind.

Forks Over Knives was the first one. Then I watched the two documentaries that Joe Cross did “Fat, Sick & Nearly Dead” and his sequel “Fat, Sick & Nearly Dead II.” Then I also checked out “Engine to Diet” and “Chocolate, Cheese, Meat & Sugar – Physically Addictive.” Mind Blown!

I still have lots more to research and learning to do but I am leaning towards this being my next thing to try. I’d like to sort of combine The Plan with a more plant-based diet but am not 100% sure. So I shall take the rest of the week and weekend to rest and focus on learning everything I can about plant-based diets and then make a plan.

I know things take time. I know I need to be patient. But I find that doing research and expanding my knowledge is definitely one thing that helps me stay focused on what I can do, what might work etc….a wee bit of hope! Not to mention with my pain level so high and my energy in the shitter, sitting back surfing the net and watching Netflix or YouTube between naps is manageable.

Natalie

Today I live in the dark…

Dang. I swear I’ve been meaning to start writing every day. My friends and family have been encouraging me to share more often because my journey might help others. But honestly it feels weird to be posting less then super happy posts, just not my style but then again, not much is my style these days.

I’ve been trying my hardest to focus on how I can contribute to my health improvement. About six or even eight weeks ago, I started an elimination diet to identify foods that cause inflammation in my body. And more importantly, identify foods that don’t. It’s called The Plan by Lyn-Genet Recitas. I have to say the food and recipes are AMAZING, and I’ve felt pretty damn proud of myself for learning to cook, trying new foods and sticking with it. It’s been HARD because the grocery shopping and cooking are exhausting when I already feel deeply depleted but I keep at it. I’m down 10 pounds and have found foods and recipes I love and that work well with my body.

Unfortunately, I haven’t seen the pain reduction I was hoping for. The doc keeps telling me to be patient, it takes time, but I had really hoped this was going to be the ticket. That within a week or two, I would start to feel my body coming back into its own. That pain would release me from it’s constant, never ceasing clutches. Alas, not yet.

I’ve also joined a low-cost gym here in town. I go three times a week for a very light work out (20 minutes cardio and some light weights through a circuit). The gym has a hydro massage bed, which was really the motivation for joining. It’s delightful.

And I’ve started meditating twice a week to learn better stress management techniques. I gotta say this was the thing that has surprised me most – how much I absolutely LOVE doing it. It’s like a dream. Feels. So. Good!

To help me keep on track, I’ve implemented a buddy system. I am doing to the eating plan with my Dad who bought the book and is following The Plan with me. We get together weekly to try new foods and talk about our discoveries. For the gym, my gal pal Jennifer has joined me at this unsuspecting torture chamber. Jen is also helping me research about plant-based eating and…we started JUICING. Julie lending me the juicer to try and always at the ready to help walk and exercise the pups and lend a shoulder and ear. Laura with her limitless compassion, love and support encouraging me every single day….helping me to fight the darkness with understanding. And of course Mom, a meditation guru, is teaching me to meditate. We get together twice a week to zen ourselves into relaxation oblivion. Mom has also graciously signed us up for a weekly plant-based cooking course starting in November. And my amazing coworkers/friends with messages and text letting me know they have my back…

Not to mention hubby who is my champion, my strongest supporter and my world. He eats my food, offers to cook, cleans up after I destroy the kitchen, listens to my complaints and wins with equal interest. He who runs my baths, tickles my back for hours and pulls my hair just perfectly…his endless tender hugs, massages and limitless love…he who never gives up…he is my bright light holding my hand through the darkness….

All this work and effort and the pain is still as excruciating as ever. In some respects, worse because I know I am doing all the right things, but it feels like I am just banging my head up against a brick well. Hanging on by a thread. Frustration and anger threatening to swallow even more of my fragile spirit. What’s the point? I have such little energy and mental capacity to draw from, without seeing vast improvements, it’s hard to stay motivated. It’s hard to find the will and strength to keep trying.

I know it doesn’t help that yesterday and especially last night was an especially bad one. My back….my ribs (new pain that started a couple weeks ago)…my feet and ankles…my legs…and a migraine from hell just to top it all off. By 8 pm, I felt utterly consumed by pain. Unable to think, unable to breath, unable to move…my body torturing me for hours none stop. No matter what I ate, medication I took, relaxing breath I took…the pain wouldn’t stop, wouldn’t let up. It feels like I live constantly in its clutches…in the dark. Endless tears sliding down my cheeks as desperation fills my soul. I want to crawl into bed and never get out.

How does one stay centered on doing “all the right things” when bad days still outnumber decent days??? When the results you need to see, ache to experience, yearn to feel…are as elusive as winning the lottery…

Today I give in to the darkness…today I wallow in self-pity…today I give myself permission to throw in the towel and just be in pain and sadness. Today I allow myself to wonder if I’ll ever come out of this on the other side…today I eat McDonald’s and cry.

Tomorrow, I’ll hit the gym, cook and meditate. Tomorrow I’ll hope for better…

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