Fibro Warrior of the Week (#24)
FWOTW: Lene Andersen
Location: Toronto, Ontario, Canada
Mantra: Pain isn’t the worst thing that can happen. Not living your life is.
Lene Andersen is our 24th Fibro Warrior of the Week. Born in Denmark, she’s an award winning writer who’s just published her first book and likes to keep her keys on ice. Or at least cold…
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Lene: I was born and raised in Denmark and my family and I moved to Canada in the early 80s. I’ve had juvenile arthritis (JA) since I was four years old and since this was the days before there was any treatment, I had to start using a power wheelchair when I was 16. I went to school rather a lot, got an MSW and worked in policy and program development in the human rights field. Lost my job when the laws changed, didn’t work for a long time and then had a horrendous flare of my JA in 2004 that also coincided with my developing Fibromyalgia. Managed to find a medication to suppress my JA and used this second chance at life to pursue a lifelong dream of being a writer. I now make my living as a freelance writer and have just published a book called Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Effects and Pain. I also enjoy photography, reading, spending time with my partner (a.k.a. The Boy), family and friends, volunteering in my community (check out Show Us Your Hands.org!) Oh, and catering to the wishes of my cat Lucy.
FD: When did you first suspect that something wasn’t right? What happened?
Lene: I started noticing something weird in early 2004. I’m used to JA pain, but this was different. My mother has had fibromyalgia for a couple of decades and thought that might be what was going on. I mentioned it to my doctor and rheumatologist, but they both didn’t think so at the time. I was pretty sure, though.
That all sounds very calm and logical, but it was a crazed time in my life. Despite living with chronic pain since I was a trial, this was a completely different kind of pain. None of my coping mechanisms worked. I also felt like I was losing my mind — one of my symptoms was that the more I flared, the harder it was to focus. I would be at my computer, intending to write “orange”, but what appeared in the document was “filing cabinet”. I’ve since learned that when I start transposing words, it’s a sign that I need to go meditate, take muscle relaxants, etc., because it means I’m flaring.
FD: When were you diagnosed with Fibromyalgia?
Lene: About six months after I first mentioned it to my family doctor. After I’d kept mentioning the strange symptoms and really intense pain I was having, she finally said, “I think you may have Fibromyalgia!” Luckily, it didn’t take her years to agree with the diagnosis. I’d made much earlier! It emphasized to me the importance of trusting yourself.
FD: When you received your diagnosis, how did it affect you?
Lene: It was a relief. It meant I could start researching the condition and talking to others who have it, to learn how to manage it.
FD: Since then, how has your outlook on life changed?
Lene: My outlook on life is very tangled up in what happened with my JA. As I mentioned above, I see my recovery from the big flare in 2004 as a second chance at life. My life is a gift and I’ve spent a lot of time since 2004, making some changes to myself and how I do things, to honour that gift. I’ve used a lot of mindfulness practice and gratitude work and in many ways, I’m happier now than I’ve ever been before.
FD: How does Fibro affect your day-to-day life?
Lene: Again, the JA and the Fibro are very intertwined in terms of impact on my life. I have very high pain levels that need to be managed in order for me to function. One of the ways I do this is by a daily Mandatory Rest Period. That’s the name I’ve given my naps —– people seem to think that naps are indulging and a luxury, but for me they’re a necessity. Then there’s managing fatigue, concentration problems, bladder irritation, anxiety, extreme sensitivity to seams in clothing, fragrance, chemicals and the general hysterics in which my body engage. To me, that’s what Fibro feels like —as if your body is having hysterics. A lot of my Fibro management is about calming it down.
FD: What can’t you do anymore because of Fibro?
Lene: I miss traveling, whether it’s in a car or to another country. I’m so sensitive that I can’t change position, sit in something other than my wheelchair or travel very far in an accessible vehicle. It’s definitely affected my ability to get around, to take part in cultural events, to visit friends, etc.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Lene: work. The combination of the JA flare and the Fibro wrecked me so much that I was very, very disabled for a long time. I get a lot done these days — I’m always frustrated because I want to do more, but when I am occasionally objective, I realize how very far I’ve come in the last nine years. It’s been a very gradual improvement in my ability and stamina, but it’s proven to me that if you keep trying, you’ll get stronger. You may not get back to the level of ability you had before, but you’ll find a different way to create a life.
FD: What has been your experience with seeking medical treatment for Fibro?
Lene: I have a diagnosis, but my medical team and I done much in terms of medical treatment. I tried Lyrica and gabapentin, but experienced side effects to those which means I can’t use them. I use Flexeril (a muscle relaxant), ultrasound on my shoulders and occasional steroid shots in trigger points. Other than that, my primary way of managing my fibro is by learning behavioural tips and tricks.
FD: How has Fibro affected your relationships, friends, family, partners?
Lene: I lost a long-term relationship in part due to that initial Fibro/JA flare. The good news is met the love of my life four years ago and he is a wonderful support. The fact that my mother — and now my sister, too — also have Fibro gives us a sort of familial support group. We‘ll call each other up and ask “did things get weird 30 minutes ago?” and it’s a huge relief when the other person agrees that the weather must have changed, because they’re hurting, too. I also lost some friends in that flare, but have embraced that. The people left are my true friends.
FD: What is the biggest challenge you face living with Fibro?
Lene: ‘ve always had a steel trap mind, with an ability to remember conversations verbatim and now I have a lot more trouble focusing and remembering. These days, my mind is more like a steel trap sieve. Also, the extreme sensitivity limits me a fair bit.
FD:What inspires you to keep on fighting?
Lene: As per my mantra, in my 40+ years of living with chronic pain, I’ve learned that pain isn’t the worst thing that can happen. Not living your life is. There’s a certain point when not fighting and not living your life as much as you can becomes… well, boring. You can either sit around waiting to get better or you can find a way to make part each day belong uniquely to you and reflect the way you want your life to be. That’s what makes the pain and all the other crap that comes with Fibro easier to bear.
FD: What advice do you have for other people who are living with Fibro?
Lene: In my experience, the key to living well with any type of chronic condition, especially one that comes with chronic pain, is to find a way to exert some level of control. Find out what your triggers are and how to manage them. For instance, if my neck and shoulders get cold, it triggers a cascade of tension that quickly leads to a full-on Fibro flare. So I always wear sweaters and scarves to keep that area warm. If I do flare, I try to make myself sweat — for me, it breaks the spasms. Remember that Fibro responds poorly to being still. The more still you are, the more you seize up and the more pain you will have. Move around, change position/tasks, make a cup of tea, fidget. It’ll keep you from seizing up. If you’re really achy, fight the impulse to be still.
FD: Do you have a funny Fibro story you can share?
Lene: A multitude. Most of them involve not paying attention to what I’m doing and then spending a lot of time trying to find something I’ve lost. Surely I’m not the only person who’s found their keys in the refrigerator??
Follow Lene on Twitter: @TheSeatedView
Like Lene on Facebook: Facebook: LeneAndersenwriter
Check out Lene’s website/blog: Your Life With RA
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