Prompts for A Chronic Voice's October linkup

October 2017 linkup with A Chronic Voice

For this post, I’m doing something a little different. The lovely Sheryl Chan, who runs the A Chronic Voice blog, has started monthly linkup parties where chronic illness bloggers are asked to share their perspectives on five different topics.  I absolutely love the idea because it helps to build community amongst chronic illness bloggers. However, it also seems like a wonderful way for me to express how my illnesses impact my life.

October’s prompts were:

Prompts for A Chronic Voice's October linkup

Prompts for A Chronic Voice’s October linkup

Inspiring

Blogging to inspireIn my first post, I expressed my hope that this blog would help others with chronic illnesses. Although I find it strange to be thought of as an inspiration, I guess in many ways I hope that this blog does inspire those who read it. Yes, my life has changed as a result of my illnesses, but that doesn’t mean it is somehow less. I’m slowly but surely learning how to control my illnesses rather than letting them control me. I will be sharing the lessons I have learned and the tools that I’m using on this journey so that others can take advantage of them for their recoveries.

Dreaming

dream of hawaiiSuper easy. Over the course of October, and probably much of the rest of the year, I will continue dreaming about my recent trip to Maui. There was something just so magical about this vacation, and despite some initial pain, I felt the best that I had in a really long time. My fatigue and anxiety levels were very low. My pain levels were much more manageable. I was able to overcome the flare that had started just before I left for vacation. Maui and its aloha lifestyle were incredibly soothing both for my body and mindset. 

Reducing

reducing artificial sugarsI lately have been re-evaluating and changing my relationship with food as part of my illness-fighting toolkit. While I’ve gotten great at increasing my fruit and veggie intake, I’ve not been so good at reducing artificial sugars. I tend to really load up on the artificial sugars by adding multiple packs into nearly every serving of tea I have. I would ultimately like to wean myself of adding any sugar to my tea, but for starters, I will at least switch from artificial sugar to honey.

Creating

building a support communityThis might be taking things in a different direction than intended, but one of my goals in October will be to create or widen my support community. When I started this blog, I also started back up on Twitter as one means to publicize my post. However, I am realizing just how vast and beautiful the Twitter community of chronic illness sufferers and bloggers is. I want to continue to connect with as many members of the community as possible and contribute more regularly.

Listening

listeningI don’t have the worst commute in the world, but I still about 1 hr 15 min to 1 hr 30 min each day depending on traffic. I’m a very anxious driver, to begin with, and chronic illness has only made my anxiety worse. Not only do I have to worry about other drivers, but I also have my own fatigue and pain to deal with. I recently discovered and fell in love with a podcast called Harry Potter and The Sacred Text. I find the podcast incredibly amusing and also soothing. I feel that listening to it during my commute will be an excellent way to distract myself from the anxieties of driving.

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Vacationing with fibro: preplanning

Aloha! I recently returned from the most wonderful vacation to Hawaii, and it is one of the best vacations I’ve ever had. Partly, it was because Hawaii is simply amazing and I made lots of great memories on the trip. However, an even bigger part of it being a successful trip is that I managed to not have a flare-up as a result of my trip!

Fibromyalgia didn't stop me from enjoying Hawaii

I think the aloha life suits me

Now, in all honesty, I cannot say that my vacation was entirely pain-free, and I started my vacation with some serious pain (I somehow irritated sciatic nerve pain trying a new yoga class, but that’s a story for a different day). However, with the help of some medication, stretching, and pacing myself I was able to recover from that incident. More importantly, for the rest of that trip and now several days after, I haven’t had any increased pain or fatigue.

What made the difference? Preplanning each day. I’m not just talking about booking activities ahead of time. As we considered activities we would like to try, my husband and I put together a Google Doc where we wrote down activities we could schedule and look at the trip as a whole to make sure we weren’t putting strenuous activities back-to-back. The planning also included building in breaks to go back to the B&B we would be staying at to make sure I could rest. For example, we did stand-up paddleboarding early in the trip and did our snorkeling adventure two days later. In-between we did low-key activities like a guided van tour. 

Paddleboarding fun in Maui

Paddleboarding fun in Maui

Confession: ever since my chronic pain began, traveling has been a source of anxiety for me. The biggest source of the anxiety is the fear that I will become a burden to my travel companion, physically and emotionally. What if I’m incapable of carrying around my luggage and they have to carry the extra weight? What if my pain is so bad we can’t attend one of our intended activities? What if my pain gets so bad we have to go to an emergency room? There are an endless number of scenarios where not only do I end up in pain but I ruin my companion’s trip as well.

Even months before we had to start nailing down what we wanted to do I began to feel the anxiety. I brought it up with my neuropsychologist, and she was the one who brought up this idea of preplanning. I have to admit that at first I raged against the idea. My first thought was, “Well, here is just one more way that Fibromyalgia is taking control of my life.” However, as my therapist pointed out, the other way of looking at it is that this is one more tool that I can use to make sure Fibromyalgia doesn’t control my life. 

Swimming with the fishes

Swimming with the fishes

So, I gave it a go. Admittedly, in my initial planning I left a lot of room for spontaneity, which I think every good vacation needs; but for those times that were wide open, I made sure to have a plan the day before and that the plan included some time for resting. For example, we had one whole day that was unplanned prior to arriving in Maui. We decided that would be a good opportunity to hike in the Haleakala Crater. Hiking can be kind of strenuous so we rested all morning and timed our trip so we could see the sunset at the summit, which allowed me time to recover from the hike before driving back to the B&B.

Overall, I’m pleased with how the preplanning worked out and feel like it is definitely a tool I’ll use more in the future.

My fibro origin story

fibro warrior

Welcome to my blog, Spoons & Sass! My goal with this blog is to share my experience of managing Fibromyalgia. It is my sincerest hope that this my musings on life with chronic pain will help others who find themselves in a similar boat. Secondly, I also hope that this blog will help increase awareness of this poorly understood condition.

With that said, allow me to introduce myself. My name is Leida. I am 31 years old. I have Hashimoto’s thyroiditis and Fibromyalgia. So, how did I get here?

I trace the origin of my new life with chronic pain to 2008. I’d just moved to Chicago with my fiancé at the time to start graduate school. The year started out great. My fiancé and I were planning our summer wedding, I made lots of wonderful friends through my Ph.D. program, and Chicago was every bit as wonderful as I hoped it would be.

Then came Christmas break. One day I was sitting on the couch when all of a sudden there were terrible stabbing pains in my abdomen and pelvis. After a few moments, they passed, and I was so relieved, but the pain came back the next day and the day after that. I went to a doctor where it was discovered that I had a cyst which was likely the cause of pain. They gave me some medicine to help dull the pain and sent me on my way.

After the break, we headed back to Chicago again. Unfortunately, over the course of several months, the pain kept coming back. Even scarier was that in addition to the periodic episodes of stabbing pain, I began to develop intense fatigue and a more constant whole-body pain. Most days I was rather lucky if I could wake up and feel pain less than a 4 on a scale of 1 to 10. But I sucked it up and continued with my life cause I couldn’t afford to leave school and was also too stubborn to leave.

While still going through my coursework and conduction research, I fit in as many doctor’s appointments as I could get. It was an incredibly scary and frustrating time. Here I am having this incredible pain, and undergoing a barrage of tests (MRIs, CTs, what seemed like a million blood draws, EMGs, exploratory abdominal surgery) but none of the doctor’s seemed to know what was happening to me.

Not only was there the physical pain to tackle but I was on an emotional roller coaster that seemed to never end. A lot of the emotional stress came from the varied and sometimes extreme diagnoses that were sent my way. Here’s a list of just some of what I heard in those beginning years:

  • You just have tight muscles.
  • It could be endometriosis.
  • Let’s test to see if you have a virus that is attacking your nervous system.
  • We would like to test for multiple sclerosis, lupus, and rheumatoid arthritis.
  • Perhaps most frustrating of all was the doctors who believed it was all in my head and probably just the stress of graduate school.

It was a dark and scary time for me. I couldn’t enjoy hanging out with my soon-to-be hubby or friends. I had to stop exercising and doing a lot of the things I enjoyed. As dramatic as it sounds, I was just waiting for my body to shut down on me and it almost did. While working in the lab one day, something just didn’t feel right. I decided I was going to go home early, but unfortunately, I didn’t make it. As I went to stand up, I just collapsed on the floor and couldn’t seem to move. I had to be taken to the emergency room.

Then in December of 2010, things changed. I was having a check up with my allergist and explained to her the situation. She had a hunch that I might be having some autoimmune problem, and it turns out she was right. From some blood tests she ordered, we discovered my body was attacking my thyroid and causing it to under-function, a condition known as Hashimoto’s thyroiditis. I got a referral to an endocrinologist who confirmed the findings and started me hormone replacement therapy, which I will have to continue for the rest of my life, but fortunately, the condition is very manageable as long as I continue to get monitored.

While I did notice an improvement after starting my thyroid medication, there was still unusually intense fatigue and widespread muscle pain. I had undergone just about every test in the book and most, except for my thyroid tests, had come back “normal.” However, my pain and fatigue persisted. It was at that point that a set of doctors in a clinic specializing in chronic pain diagnosed me with Fibromyalgia. That was in June 2013.

Ever since then I have been on a journey to control Fibromyalgia rather than letting it control me. It hasn’t been an easy journey, and there have been many stumbling blocks along the way but I’m slowly figuring things out, and that is why I’ve started this blog!