I was really struggling to find the motivation and energy to write today’s post as I am having an “off” day today, so I figured why not blog about why I am having an off day! Here is the reality of it. I have Fibromyalgia. It is not usually something I share with everyone for many reasons. One of those reasons is that, I refuse to let Fibromyalgia dictate how I live my life, nor do I like to use it as an excuse. I try not to complain … much! I am super fortunate to have a husband who is understanding and so sweet! On those off days, he is usually picking up my slack, and getting things done so I don’t have to! Like I said…SUPER FORTUNATE! My hope for this post is to maybe help one person realize that life does go on after a diagnosis like this.
Last night, the plan was to create a great post about a new recipe that I found on Pinterest. Beef Barley Soup! YUMMY! Today, however, my mind and body had a different plan. It’s an off day, I quickly realized, when I woke up this morning and went upstairs to make a cup of tea! Here was my first clue… I never made myself that said cup of tea. No biggy right? Well it kind of snowballed from there.
Let’s start at the beginning. I was officially diagnosed when I was 29 years old, so about 12 years ago. I knew however, something was wrong MANY years before that! Every time I went to the doctor, there was always a reasonable explanation why I didn’t feel good. This is not uncommon and I am just one of the millions of people who are told the same thing! “You’re a single parent, you’re just tired!”, “you are overworked!” and “you must be coming down with something” and wait and MY FAVOURITE… “you’re a hypocondriac”, were in the top reasons why I felt debilitating tiredness and almost constant nausea! I WAS IN MY EARLY 20’s! Really? I am just tired?
I went to countless doctor’s but, again, they always found what they described as a reasonable reason for my symptoms! What kind of symptoms, you ask? My symptoms included, as mentioned before, debilitating tiredness, sensitivities to smell, light, touch,sounds and textures. Regular headaches which, most times, became a migraine. I struggled with falling asleep and staying asleep. For years, I thought I was just an early bird, because I would be up at 4-5 am. At the time, along with being a single parent, I was also a college student. I had issues with concentration and staying focused. I often got lost in details and struggled to remember things! I will spare the details of my bathroom routines and I felt as though I weighed a million pounds. These are just to name a few.
The worst for me was, and still continues to be, the consistent and persistent nausea along with the brain fog! The only way I can describe my brain fog is by imagining a really bad snow storm at night. The kind of storm that, when you switch over to your high beams in the car, all the snow coming at you! Another good example is travelling at warp speed in space. This is what goes on in my mind. I am constantly filtering through the information that my brain is receiving. This in itself is exhausting! This picture is from videohive.net.
To make a very long story short, I was finally officially diagnosed by a doctor in a different province. This doctor could relate to my symptoms as she too was a Fibromyalgia patient. The day I went and saw her, I walked in with a comprehensive list of all the symptoms that I was experiencing followed by the phrase “AND I AM NOT A HYPOCONDRIAC”. She looked at my list for a period of time then responded with, “well, we will have to do some tests to exclude certain things but I believe that you have Fibromyalgia!”. My response? I got up, walked over to her and hugged her! Then, I thanked her. This confused her because, in her mind, I should have been distraught and here I was thanking her! I explained to her that I was just so thankful that I WASN”T CRAZY and I wasn’t making it up! I actually had something that had a name!
In the 12 years since that time, I successfully completed college and also acquired a Bachelor’s Degree from University, thanks to very supportive parents. I developed tricks to help me remember things (I am a Post-It queen) and often recorded my classes so I could go back to them, once I could focus better. Along with being diagnosed came a prescription to help with sleep and chronic pain. I found the love of my life and best friend and proceeded to marry him.
I successfully held down full time employment, working my way up to a management position. My employer was always sympathetic and knew when I wasn’t feeling well and always knew that if I said I needed some time off, it was legit, never questioned it and helped me make it happen! This only happened because I never abused the “I have Fibro” excuse. I worked my ass off and I benefited from it!
In that time, I also cared for my daughter, who was diagnosed with Stage IV Wilm’s Tumor, or cancer of the kidney. She beat that cancer diagnosis, is now 22 and is one of the strongest people I know! She truly is my hero!
Now to the current day! I still have many good and bad days! I am fortunate to be able to work at my own pace and when I feel good! I have learned to be able to laugh at myself. I often have a disconnect between my thoughts and words, saying one word while meaning another. In my house, we call it Janguinese! I still get lost in details and ask to be shown as opposed to told about things wherever possible. I have learned to say “no” to things that I don’t think I can manage and I am lucky to have a supportive family and friends who understand it. I write everything down! EVERYTHING! I carry Post-It’s with me everywhere! I still struggle with “racing thoughts that run rampant in my head” but try to distract myself with something positive, like getting outside with my husband and 4 dogs. Nature is a great healer.
I also found some reading material to help me better understand the condition. My favorite book is named The Fibromyalgia Solution, written by David Dryland, MD. So far, in my opinion, it is the most well written book regarding this disorder. If you are struggling to understand Fibromyalgia, I HIGHLY recommend it!
Most importantly, I have learned that EVERYONE HAS POOP and that I CAN manage this, sometimes debilitating and chronic condition and I do manage it at my own pace. For example, it took me all day to write this post, where on a good day it would have taken MUCH less time! Today, everything I wanted to say was all jumbled in my head and I had to make sense of it step by step. Not to mention, my brain and fingers were not cooperating and I had to backspace about a million times so I apologize in advance for the spelling mistakes and improper grammar (sorry mom) !
But I digress, life is to short to go through it miserable. Find something that you enjoy and do it as much as you can! I hope this post helps to bring someone strength and hope that life with Fibromyalgia doesn’t have to define you!
Until next post,