Molly’s Fibromyalgia Journey – Part 1
Molly’s Fibromyalgia Journey – About this Blog
This Blog is about Molly’s Fibromyalgia Journey; Molly is 24, a part-time model and dance and Pilates instructor. She is beautiful, fit, healthy and has the world at her feet.
She has also recently been diagnosed with Fibromyalgia.
I know Molly personally so we are working together to raise awareness of what it is like for people living and working with Fibromyalgia. And importantly finding ways to manage it so she can continue with her preferred way of life.
This Blog will follow Molly and my fibromyalgia journey together as work through her treatment to find what works for her.
Helpful comments and curious questions are always welcome!
Kate – Clinic Director – InsideOut Wellness Centre.
Starting my Fibromyalgia Journey – January 11th 2020
Trying to understand what it is like for someone to live with fibromyalgia is quite challenging. So I have come up with my own explanation for those who don’t suffer, could begin to relate to somewhat.
Think about waking up New Year’s Day, ready to begin the year ahead on a high, you might try new classes in the gym and give it your all, followed by a swim and finally finished off by going for a long walk with the family and dogs. Now think about how you would feel the next day waking up…. sore right? Now think about the WORST possible hangover you could ever think of and add that on top. This is what it feels like to wake up EVERY day living with fibromyalgia, without doing the exercise, without drinking excessively for the hangover.
How Fibromyalgia affects me
Fibromyalgia is a disorder which causes chronic pain, extreme fatigue and brain fog (to name just a few). On a day to day basis, even hour to hour, my symptoms can vary drastically. With it mostly being an invisible illness, I can outwardly appear to be just fine, but unfortunately that Is not the case. It is really difficult explaining to friends that you NEED to cancel plans due to extreme tiredness, or chronic pain which has come on just before you are to meet them. Often making you feel isolated, lonely and misunderstood.
I am learning now, to treat my energy like money. For example, if you were to spend most or all of your wages in a day or two, then you wouldn’t be able to afford to live for the rest of the month. Similarly, if I have a good day and use a lot or all of my energy because I feel I can (and it’s fun to be fun), I will then suffer greatly for the next few days, possibly weeks. The worst part about this scenario is that using too much energy causes flare ups, however sitting or lying down for too long (30 minutes or less sometimes), also causes pain and prolonged flare ups.
Flare-Ups
Unfortunately, you never know when you are going to have a flare up, which effects your work life drastically. A flare up makes it impossible to get out of bed and ready for work, let alone work a full day. Especially, for me anyway, I suffer with constant flare ups throughout winter months as the condition affects how my body regulates temperature. I personally am freezing cold most of the time, which again aggravates and increases pain. No matter how many layers I wear, I am freezing, until suddenly, I am overheating, there is no happy medium.
I have got to say that one of the MOST annoying symptoms of my Fibromyalgia Journey is Fibro-Fog. It can sometimes feel like you are living in a state of confusion. From forgetting what day it is, becoming disorientated on a familiar route, to putting your phone in the fridge!
Although living with Fibromyalgia is challenging, it also brings its weird and wonderful benefits, such as being thankful for the smallest beauty every day brings. I am forever grateful to my loved ones around me who try to understand what it is like to feel the way I do daily, even though it is awfully challenging. Their love, support and empathy makes the worst of days bearable.
This post is one in a series on Molly’s Fibromyalgia Journey.
