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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Comments

  1. Glad you had a good time. Keep up with the treatments. Enjoy life!

    Patricia Rickrode
    w/a Jansen Schmidt

  2. Didn’t realize you had fibro, Natalie. My sister has had it for years. She rarely mentions it anymore, but I’m sure she feels the effects of it. I sent her the link to this post, but I don’t know if she’ll become a follower or not. Take care of yourself. Glad you have a loving husband to help you along.

  3. Natalie, so glad you got to have a travel weekend with your girlfriend. I’m sorry you are dealing with fibro. I deal with fibro, but it is at borderline levels (9 out of 11 pressure points) so the rheumatologists will not officially give the diagnosis, they insist it must be all 11 points. In the meantime, there is still the pain and fatigue. I have learned through much trial and error what my limits are and what self-care methods work for me. You sound like you have a great care team, including your hubby! Love the new blog design, too. Thanks for sharing your journey with us. 🙂

  4. Good stuff Honey – just one thing – Do I need to incorporate more SHOCK or more AWE!? 🙂

  5. Natalie! I am SO embarrassed! For some reason I must have fallen off your subscription list after you took your first blogging break from bedazzling us every week. Even though I follow you on IG and have loved watching you and Scott and your ‘kids’, somehow I missed the message about Fibro. I feel terrible … I just went back and read some of your posts about your dark days … and I sat here and cried. How could I have missed all that? I’m so sorry to read about all the struggles you and Scott face. Even so your beautiful sense of humour and love of life shine through. Please accept my sincere apology for not having been supportive … while I wallowed in ignorance. Sheesh! I don’t know how I got back on the list but I’m very glad I am. Hugs to you. Onward! xo

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