I have several friends with Fibromyalgia and have talked to countless people who struggle with this monster. While women are most affected, men and children are not immune to Fibromyalgia. I myself suffered what I think was my trigger event in my 20’s and was officially diagnosed at age 32. I even wonder, at times, if I had events beforehand that were foreshadowing my fate. I may never know. However, the one thing I do know between the many friends I have personally and the countless people online as well as in public, such as in the line at the store, each and every case is unique. No two cases of Fibro are ever the same. Ever.
Fibromyalgia can run the gamut from unnoticeable to bedridden and most of the time somewhere in between. One of the warm water/arthritis pool teachers at the YMCA has Fibro. If I had not talked to this lady myself, she would be the last person I would have guessed as having even a hang nail. She had endless energy, is bouncy, never seems to be in pain and is a great motivator. I do agree that we must move through our Fibro. Being stationary only brings more pain. I have tested this theory and moving (in the end) always helps lower my pain levels. Of course Fibro is not just about one treatment, but that is an entire other subject. She is a dynamo and the last person one would think as having Fibro.
I live in a fairly small community by some standards and know most of the clerks at the stores I frequent. I know of two clerks in separate stores that stand all day. They too have Fibro. Both ladies are around my age. Both do their jobs very well and both hurt tremendously at times. I do not know this because they tell me but because I can see the pain in their face. I generally inquire and tell them to be straight with me. I will then get the truth. They are concerned and care about me and were pulling for me during my disability ordeal as well as my impending neck surgery. I too wear the ‘mask of happiness’ when I am hurting badly or in a flare. I think we all have. I know that mask and know how to see through it.
Then there are those completely bed ridden and I fear I will be there someday. I will go down fighting, trust me I will! But I get it. I see it getting closer everyday. In the last week alone, I have spent three full days laying on my couch all day. It is utterly soul crushing! Paul and I already talk about having to rent a wheelchair if we want to ever go back to an amusement park. I have to sit every few minutes when I go shopping. There is no way I can stand all day. To sit every 15-30 minutes at a park would mean getting nothing done. I balk at it. I detest it. I pray for me it never comes. Nonetheless, I so understand where it could get to this.
I feel that Fibromyalgia/Chronic Fatigue Syndrome is one of the most wide ranged illnesses that exist. My first symptom was numb hips. Yes, numb hips and from there it turned into a cruel monster. And in the prime of my life I was struck down.
My best friend got to come up and visit me for 8 days for Thanksgiving. I met her through social networking and she too suffers from chronic illness. She stated I have the worst case of Fibro she has ever seen. And I was having a good week! All the same, this is not a contest. In my last blog I made that very clear. We are all sick, we all hurt and we all have numerous other issues related to our Fibro and in some cases other chronic illnesses or spinal degeneration, etc.
My hope and wish in this post is for us to all care about our fellow warriors. My (arthritis) pool class teacher could be hiding pain. Behind her bubbly personality could be sleepless nights, lots of pacing the floor and a fight she does not show the world. As stated, I hide things all the time…. we all do. We all hurt, we all feel like crap and we have all had a huge part of our lives ripped from us. This is not a one size fits all but we have the common denominator: pain as well as all the collateral damage Fibromyalgia throws at us. My Fibro is not the same as yours or his or hers. So let’s just support each other. As the quote says,
“Be kind, for everyone you meet is fighting a hard battle” ~ Plato
Until next time, K.
This is SO true and I wish more people would realize this! It’s truly NOT a “one size fits all”! We have to stick together and keep fighting! I love your blog!!!!! <3
Thanks Jenn! Yes, it is true. Fibro is different for each and every Fibromite. And each day may be different than the one before, and each year may progress with the possibility of a remission. We all have the same goal: a cure. <3
Wow, did I need to read this today. I just got over a 2 1/2 day flare up. It takes a lot to make me break…as I am one of those bubbly ones walking around in pain. 2 1/2 days of the bad flare ups usually kicks my butt and does me in.
I work with two other women who have Fibromyalgia and like you said, everyone is so different. We each have such very different symptoms. I am one of those who have been bedridden so I know how awesomely blessed life is to be up moving around which is why I think I am bubbly.
What you shared about the wheelchairs in the park spoke to me also. I took my daughter to Florida this past year and spent two days in a hotel room while she was at Universal with her friends. It was a very rude awakening for me.
Thanks for sharing.
Hi Irish! I am so glad the post spoke to you. How can such an intense illness not be life threatening? I have always wondered that. I am glad it is not, but still…. one wonders. Fibro is completely unpredictable. We are at its mercy and that is one of the things I detest most about it. And my heart *breaks* for you having to spend that time in the hotel at Universal. That is heart breaking. There are no words. Sorry does not even begin. ((((soft hugs))))) K.
I’ve had physical therapists tell me I’m the worst they’ve seen (when I was doing quite well). My response was well you should have seen me a year ago? And obviously you have no experience treating people with Fibro, so I think I should go elsewhere.
We are each unique with this and it does make finding good treatment that much more difficult.
Sounds about apros pos for PT’s… sadly they remain paid by repeat customer’s. A good healer of any kind will ‘let you go’ when you are feeling well enough and they know you are doing OK. Ironically my best PT is ‘swimming with the wise one’s’ at the Y… the arthritis swimming. I could care less if I am young enough to be the daughter of most of them in the class. It helps me and is so, so much less expensive than PT. That and Yoga and walking on the treadmill… noting I do each at *my* speed and level which means sometimes it is a good day to just get in the warm pool and move any part of my body. It is a good day in Yoga to just show up and remain in child’s pose for 90% of the class and it is a good day on the treadmill to just walk for 10 mins. But it is better than nothing at all! 🙂 I always say ‘go with your gut’, it is your best voice! Thanks for stopping buy and come on back! 🙂
Kelli, I know it’s been years since we have spoke. I was at the Salem walmart tonight and I saw you. Looking wonderful! I’m sorry you are going through so much pain. I just pray that the pain will ease up. I’m sorry for whatever had happened. Was afraid to say anything to you today. So forgot that I had your link for the loosing site and found this and wanted to say hi.
Hello!!!!! It was so neat to see you! Salem Wal Mart the social center of Salem! Thanks so much for stopping my my so in ‘need of an up to date post’ blog. And come on back in a day or two as I plan on doing just that. You stay warm too… it is sooooo cold. K. 🙂
Dear Kelli, hope you are ok and just having a nice holiday somewhere. Wishing you all the best in 2015 from Fibro Blogger Directory and my personal blog Fibro Files
Thanks Lee! Just a bit behind on blogging due to a bad tummy flu at Christmas but planning a new post in the next few days. Thank you so, so much fellow blogger for stopping by. Thank you too, for all your hard work! 🙂