Fibro Warrior – Alison Exelby

This week we are getting to know Fibro Warrior, Alison Exelby of  Auckland, New Zealand. She was diagnosed with Fibromylagia in October of 2014 at the age of 36. But, she says she’s had symptoms since June of 2013. She has a partner that she’s been with for 3.5 years. She’s a mom of two boys (ages 14 and 12) and enjoys scrap-booking and crafts. She’s also just started studying Early Childhood Teaching.

What lead up to your diagnosis (symptoms, dr visits, etc)?
At first doctors told me it was the flu, but I just didn’t get any better. After two weeks in bed not being able to do anything I went and saw another doctor. She told me I was depressed, I went to another doctor, I walked into his office and he had read my notes and before I could say anything he said I think you have Fibromyalgia, and with that he sent me to hospital for more tests. They sent me home saying it was a viral flu and there was nothing they could do. After more tests (endless tests it seemed like), and finding a good doctor, who supported me and believed that there is such a thing as Fibromyalgia, I finally had a diagnoses.

I had a friend whose sister has Fibromyalgia and she was able to help me understand it a bit more. When I first got sick I spent 6 weeks in bed unable to do anything. After 6 weeks in bed it took a long time for my body to get enough strength back to do every-day activities. Having a shower, folding washing, hanging washing or doing the food shop all ended with needing a nap afterwards, often a 3 hour nap. Leading up to getting sick I remember feel exhausted all the time. I would be sleeping a good 8-10 hours but would wake up feeling like I had only slept an hour, I didn’t understand what was wrong or why I was feeling like that, looking back now I see it as the start of Fibromyalgia.

What was your life like?
Life was busy, it was not long after my partner and I have moved in to our new house. I was working as an Education Support Worker supporting children with special needs, at the local kindergarten. When I got sick I used all my sick leave in the first couple of weeks and then had to take unpaid leave. It was hard, I was very frustrated with my body and hated that I was unable to work and be there for those children. I was unable to be there for my boys and help them with their school work or day-to-day life.

How did your family initially handle your illness?
My family has been very supportive, it’s not easy though. When I first got sick I spent 6 weeks in bed unable to do anything. I couldn’t drive myself to the doctor appointments and my whole body ached. My partner worked 11 hour days then he would come home and cook dinner and sort the boys out. My oldest son has autism and I think he really struggles on those bad days when I’m in bed and can’t be there for him if he needs me. I’m grateful that my boys are old enough that they don’t rely on me 100% .

What do you feel is the most challenging aspect of Fibro?
The fatigue. There are some days where I just feel so exhausted even after having a 8 hour sleep; I can wake up and feel like I haven’t slept at all. Also, I find it challenging that driving is something that flares up my Fibromyalgia. I feel that it has taken away my independence on those days I can’t drive myself somewhere I need to go. I struggle with never knowing what tomorrow will bring, will I be able to do everything I need to or will it be a stay in bed day. I keep a day-to-day diary in hope that I will see a pattern to when I have flares and can try to avoid them. I know that any little illness –head cold, sinus infection, sore throat– these all lead to a flare and days in bed.

What (if anything) have you found/ done that has improved your symptoms?
Going to the gym helped me a lot. When my doctor suggested it I was like “are you for real I can hardly walk and you want me to go to the gym,” but it actually helped. I loved the aqua aerobics the most. Since I have started studying this year I have not had time to go to the gym but maybe I will fit it in again somewhere soon.

How open are you with friends & family about your illness & symptoms?
Pretty open. Sometimes I don’t like to talk about how I’m feeling because I don’t want to sound like I’m complaining all the time. Some people struggle to understanding because it’s an invisible illness; I don’t think they believe that the pain is as bad as what I say it is.

What is the best advice you’ve received about Fibromyalgia?
Listen to your body. While I don’t always follow that advice and I can be very stubborn, when I do follow it is worthwhile.

What is your favorite way to cope with your life as a spoonie?
I like to be able to take my mind of my pain and I did a lot of scrap-booking. I say I did a lot of scrap-booking because now that I’m studying full-time I don’t have much spare time to scrapbook. I enjoy watching tv also and when I’m sick in bed my cat often spends a lot of the day curled up next to me. She is good company.

What is it that inspires you to keep going, despite your illness?
My family, work and my studies. I’m too young to let fibromyalgia beat me. There will always be days where I do have to stop and just let my body rest. I love my work and that is a big motivation for me to get up every morning.

What is one thing you’ve learned about yourself since your diagnosis?
That I can handle a lot more than I thought I could and that I’m stronger than I thought. It hasn’t been easy, but I feel I do cope well with the hand I have been dealt. It’s amazing what we can cope with when we have too.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Listen to your body, it’s okay to need to rest. Ask for help when you need it, don’t feel like you have failed if you need help.

Is there anything else you’d like the readers to know?
Take life one day at a time, do what you have to and leave what can wait for tomorrow.

You can find Alison on Facebook if you’d like to contact her or get to know her better.

If you enjoyed this interview, why not share your story? If you are live with Fibromyalgia and would like to share your story please contact me.