This week we are getting to know Bec (aka Cracked Betty), Sydney, Australia.
Tell us a bit about yourself.
I am a writer and marketing consultant for small, professional businesses, so I get to work with some really fantastic, interesting people. I am single without kids, but surrounded by nieces, nephews, friend’s kids and lots of lovely animals I get to pet-sit from time to time.
Outside my working and family life, I love to travel when well enough, spend a lot of time in the Blue Mountains west of Sydney and indulge in a lot of creative work, such as writing, photography and craft when my energy allows.
When were you diagnosed? How old were you at the time?
I was diagnosed at the age of 33, however at the time my rheumatologist suggested it wasn’t the last of my diagnoses, but rather most likely the first one to appear based on the trajectory of my symptoms over time. I also have rheumatoid arthritis and Hashimoto’s disease.
What lead up to your diagnosis ?
I have had poor health since having glandular fever in my late teens and had struggled to find a name for the myriad symptoms that were affecting my body: muscle pain, fatigue, hair thinning out, migraines, digestive issues, horrible brain fog and sensitivity to touch, light and sound. I’d tried in vain to get a diagnosis for what was wrong with me and was told more than once that I just needed to exercise more and clean up my diet (I was walking to University daily and eating a vegan diet at the time).
In the end, I just did what people in my family do: Pulled on my big girl boots and did my best to live with the various problems on my own until I was finally diagnosed with Hashimotos disease at age 28. I was put onto thyroxine and told my issues would be solved, but the only symptom that improved was my enlarged thyroid.
When I was 31, I had a nasty bout of bronchitis and within weeks had “frozen shoulders” which rapidly spread to the hands, wrists, ankles and feet – this was the start of the rheumatoid arthritis. It took 18 months to get a medication that kept symptoms under control, but it took a huge toll on my life. I was living overseas without any family close by so I was largely on my own, dealing with two autoimmune diseases. It was possibly the toughest time because I was on my own. My once exciting travelling life had narrowed down to a small flat on the Scottish coast and I was really struggling. I couldn’t work full-time and was eking out a living as a copywriter, supplemented by the very-difficult-to-get disability support allowance.
I was pretty fortunate in a lot of ways though – the RA was picked up early and was treated aggressively in my first year. After 6 months on a treatment that actually worked, my GP mentioned that many of my symptoms weren’t typical of RA and that Fibromyalgia often accompanied Hashimoto’s disease. But she felt that there wasn’t anything conclusive and focused on controlling the RA and the Hashimoto’s.
I was often wracked with muscle pain, savage fatigue, brain fog, poor sleep, unable to do simple things like shopping or walking much of a distance, and IBS. Working from home meant I could work around some of this, but it was a tough time. I returned to my home country, Australia, in 2008 because I could see that the little bit of freelance work I’d been able to do was starting to dry up and there were a lot of issues with the economy. This was just as the GFC was starting to really take hold and I knew if I was going to make a move, now was the time.
One of the first things I did on returning home was find a rheumatologist. She was extremely thorough and said that the RA was well controlled but most of my symptoms were typical of Fibromyalgia and she performed the tender points tests along with other muscle tests to confirm it. From a treatment perspective, she was wary of adding more medication into the mix as I am on tough meds for the RA, so we looked at lifestyle changes. I see her every six months and she has been supportive of me looking at complimentary therapies to help with the management of my chronic illnesses.
How did your family initially handle your illness?
When I moved back to Australia, I moved into my parent’s house for a time. My father had died and my mother was struggling herself to deal with being on her own again. It suited us for a while but after a time I found it too stressful to be living there while we were trying to sell the house, so I found a small apartment I could afford nearby after picking up some contract work I could do from home.
At first my family was angry that I’d kept the extent of my illness from them. I’ve always been very independent and living overseas made it easy to keep them from worrying. My mother and elder brother are fantastic supporters; my other brother has never been able to cope with illness and we don’t talk about it.
Coming home, my mother and elder brother could see just how sick I could get and they took the time to learn about Fibro, RA, and Hashimoto’s. They often pitch in to help when I can’t do things around the house and will offer to drive me places if I can’t drive myself, but they are also mindful that I want to be independent as much as possible.
My niece and nephews are still very young, but they’ve learned I can’t always play with them the way they or I want to because my “handies” often hurt or their hugs need to be gentle. One of our very special treats though is to snuggle in bed with a book together and read. It’s restful and it’s a very special time for all of us.
What do you feel is the most challenging aspect of Fibro?
Fatigue and brain fog are the two most debilitating of my symptoms. While I live with a lot of pain, I’ve worked out how to manage the pain side through effective pain management, myofacial release, massage, and gentle exercise.
I can’t disconnect from the fatigue and brain fog because both affect my ability to concentrate, drive, interact with people, and be completely present. I often have to cancel on friends or ask my family for help, and it’s not fair to them or me, but most of the time, they understand.
The saddest part is not being able to travel as independently as I once did. I get so tired when travelling that I need to have a good plan in place for the flight, and I have to plan to have a couple of days to recover from the toll that travel takes, when I get to my destination. It makes it a less spontaneous experience, and I miss that dreadfully.
What (if anything) have you found/ done that has improved your symptoms?
There are many things that help me manage Fibromyalgia symptoms. I’ve learned to identify what’s RA pain and what’s Fibro pain, so pain medication is part of my self-management process.
Other things that are hugely beneficial: a fortnightly massage (hot stone and remedial or myofascial release) which is incredibly gentle but relaxes the tightness in my muscles; eliminating gluten and dairy from my diet and having a daily meditation practice.
I also work in 90 minute blocks, which I break up with either a short gentle walk or a mindfulness session. The regular breaks make it possible to switch off the brain for a bit and manage my energy better.
Are you still vegan?
No, I’m no longer vegan. I actually became quite unwell with anemia over time, so I now have a mostly organic diet comprising of Mediterranean-style foods with small amounts of organic chicken or beef. I have a lot of food sensitivities so try to eat whole food as much as possible and avoid processed, sugar-laden or artificial anything in my diet.
How open are you with friends & family about your illness & symptoms?
With my family, very open. They can see I just try to get on with my life and they are available to help me when I need them. With my friends, I’m selective. I have a few very close friends who really see what I live with; they make allowances for me. Some friends, however, just struggle with the unpredictability of Fibromyalgia and RA.
I’m also very open with my business clients about my health challenges without going into detail. They know that I will do my best to get their work done on time, but they also understand that I need flexibility to manage and plan my schedule around my capacity. I’ve been incredibly lucky to have clients who will accommodate that and who are generally pretty supportive of me.
Do you blog about your illness? If so, what inspired you to do so?
I do have a blog at www.crackedbetty.com and I’ve written about my illness, but because I write for a living it can get neglected. I’ve recently spent some time up in the mountains writing, so I’m about to give the blog a reboot and start blogging more about the day-to-day challenges and the changes I’ve made around diet and meditation. Both have been so positive I want to share my successes (and failures) with others.
What is the best advice you’ve received about Fibromyalgia?
Look at the brain/gut/health connection and learn to manage stress. I didn’t put all those symptoms together until I started to see a holistic practitioner who specializes in autoimmune disease and Fibromyalgia and takes an integrative approach to managing both. I’m not cured by any means, but making changes to my diet, such as removing gluten and dairy, has made a massive change to how often I get flare ups.
What was the worst advice that you followed?
I’ve learned now to filter out the well intended but ultimately frustrating suggestions on how to “get better.” But if I had to pick one…
“Take the medication and you’ll be fine.” I don’t need to tell any spoonie how frustrating it is to hear a doctor tell you to put your faith in a bottle of pills, particularly when they aren’t looking at the whole picture (and in my experience, very few “specialists” actually do take an integrative approach).
What is your favorite way to cope with your life as a spoonie?
Walking and just being with our shared family pooch, Watson. He’s actually my brother’s dog, but he stays with me on a regular basis and reminds me how important it is to be just in the moment. He’s also very attuned to my energy levels and is so sweet to have around when I’m not at my best.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned what resilience really means and that I’m much stronger than I give myself credit for. The other would be that you can choose how you respond to change, rather than just reacting to it.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
There are two things I’d suggest: one keep a journal or health diary to map and monitor your symptoms. Fibro can present in so many ways and having a clear description of what you’re coping with will help doctors to work with you.
The second thing is to look at building a toolkit of coping mechanisms that are healthy for you: humour, friends, diet, meditation, music, exercise, taking regular breaks etc – whatever brings you joy or comfort when you’re struggling, those are the things to reach for.
This interview is part of a weekly Fibro Warrior Series. A new interview is posted each Wednesday. Sign up for my newsletter to make sure you don’t miss one, and if you’d like to share your story please contact me.