Fibro Warrior – Melissa Reynolds @thefibromama

This week we are getting to know Melissa Reynolds of Auckland, New Zealand. She is married with one small toddler. She was diagnosed with Fibromyalgia in her early 20’s after struggling with it for years.

Tell us a little about yourself:
I am a mama with a beautiful toddler and I am married to the love of my life. We have small dog named Coop, who more closely resembles a grumpy old man than a Cavalier King Charles Spaniel, but he’s my little buddy.

Work has been an ongoing experiment for me, but since my son turned one I have been working half-time. It is hard, but I really enjoy being able to keep my hand in my career and still be able to spend quality time with my son. It’s hard to define what I do, but I contract and tend to work around research (gathering, summarizing and utilizing it for project support).

What lead up to your diagnosis (symptoms, dr visits, etc)?
I was given the word “Fibromyalgia” by a GP in my early 20s, after I had already been struggling for years.

The pain came on slowly from my early teenage years, beginning with pain in my lower arms and wrists. It progressed into my shoulders, it got to the point that I would get home after university classes and be in tears from the burning pain. In my third year of university I came down with a horrific flu-like bug that brought the most horrific fatigue with it. It took antibiotics and about three weeks to get better (after two weeks of being sick prior to going to the doctor), but the fatigue never left. I believe that I was able to keep going at a proximity to “normal” because it came on so slowly -I adapted.

I have had to do a lot of research for myself and I am constantly experimenting with my health – all facets of it. It wasn’t until this year (2015) that I found a GP who would refer me to a Rheumatologist, unfortunately, after one visit several months ago, nothing has happened. I had really hoped for some help!

However much I think these people can help, I have realized I am the person most capable of helping me. I feel as if I know more than these people, about Fibromyalgia and myself.

How did your family initially handle your illness?
They didn’t. I kept coping on my own.

What do you feel is the most challenging aspect of Fibro?
Living everyday life, people expecting you to be “normal” but you are so damn tired and sore!

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I am unsure if I have Fibromyalgia and Chronic Fatigue Syndrome (or the other terms for that) – the Rheumatologist said she would call it Fibromyalgia but another doctor from another specialty may call it Chronic Fatigue. I feel that I have both (and that they are separate disorders) – given that the fatigue came on after a severe bug and that the pain has been coming on for years. The two illnesses work together so I can’t tell where one ends and the other begins – when the pain is worse, I am more fatigued and vice versa.

What (if anything) have you found/ done that has improved your symptoms?
Living a healthy lifestyle. I do what anyone ought to do. I eat as healthily as possible (this is a constant experiment). I exercise as best I can, I am currently obsessed with yoga because I can use it to be a proper workout (I can do about 15-20 minutes at the moment but this changes in my stages of life) or a more relaxing, gentle workout. It also encourages good breathing and stretching. I also receive many comments about being spotted walking around my neighborhood with my son and my dog (we do about 20 minutes)! I work really hard to sleep as well as I can, eight hours really makes a difference in how I cope with the day and influences my pain levels.

Heat is my favourite daily pain management technique. I adore a hot bath and my heatpack is usually glued to my neck first thing in the morning and after work.

How open are you with friends & family about your illness & symptoms?
I am extremely open person. I would be open if they showed interest, but they tend not to. My husband’s family has not tried to understand at all despite my attempting to tell them early on. I have a couple of people I can open up to, but I have to be careful not to sound like a downer!

Do you blog about your illness? If so, what inspired you to do so?
Due to feeling like I needed an outlet when I was pregnant (I was in a lot of pain and was so much more exhausted than chronic fatigue could even have prepared me for) I began a blog that read like a diary.

When I had the baby my posts turned more positive and advice-based. I felt like I had learnt so much that I had to share it. There was such a lack of information about pregnancy and Fibromyalgia. So I changed the website to a WordPress blog, edited my previous posts and still blog there today. Now it is focused on my mission to live well, be a good mama and wife, while dealing with Fibromyalgia.

I thought that if I helped even one person with the ordeal that can be pregnancy with Fibromyalgia, then I have succeeded. I have spoken to one woman who has told me how much the real journey of my pregnancy helped her to prepare.

What is your favorite way to cope with your life as a spoonie?
I try to frame things in the positive and be proactive. I have loved the last few years, since some major lifestyle changes, I have managed to create space to sit apart from the daily struggle of pain and fatigue and intentionally work on my well-being. I read and I experiment and strive to be well.

What is it that inspires you to keep going, despite your illness?
My boy. It’s all for my son now. All my experiments, my research – my quest to be well – is intensified now that I have him to consider.

What is one thing you’ve learned about yourself since your diagnosis?
I’m extremely resilient and independent. (Oops that’s two!)

What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
Research. Find out everything you can about your illness and how you can live well with it. It’s your job to be your advocate and support your doctors – they just can’t know everything.

Now that you’ve learned a bit about Melissa, be sure to check out her blog Confessions of a Fibro Mama. You can also connect with her on Twitter and Facebook.

If you enjoy these Fibro Warrior stories, please consider sharing your own. If you’d like to share your story please contact me.