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Tuesday, January 5, 2016

Ruby's Musings by Request...Fibromyalgia

I have quite a lot of new followers on my FB page, it is both a blessing and on some days it is truly overwhelming. There is more pressure now to post images on the page and blogs here. Inspired by a beautiful young woman I follow by the official name of The Cherry Dollface, who this year decided to do a blog each and every day introducing us all to the real her, not the woman many of us retrophile/pinups look up to, and inspired by a new follower who told me she wanted to understand more about Fibromyalgia and what it is and how it effects my life. I told her I had a separate page, an overview ( HERE) that would do so much better at explaining the whats, I often do not like to talk about it or dwell on it, and I may mention it from time to time on the fan page on FB, but it is not the focus; I simply do not let it define me. But as I said I was inspired. I had a completely different post planned today, a fun one, or at least for me...and I hope for you. but have decided I will share that on Friday. So if I am not going to tell you what Fibromyalgia is ( I do encourage you to read the page I did and follow the links) what is this blog about? Well, I thought I would tell you what it is like for me personally, day to day, it is different for each and every Fibro patient, no two of us are alike in how we are affected. 

This is the face of Fibro...sometimes I can manage my
hair, and other times...

.... this is the face (and hair) of Fibro.
This is the face of Fibro

And this. 

I am a lucky and blessed lady. My fibro symptoms are not as bad as so many out there, even those that my Aunt suffers from. There are people out there that have it far worse than myself; I have seen on the forums that people have seizures, spend a lot of time in the hospital for various reasons, and their pain levels are a 20 or more on a scale of 1-10! My symptoms are very much a roller coaster ride, but none are so bad that I can not manage them. I have learned to listen to my body, take time for me, I do my best to watch my diet and to try to exercise, even when I am not up to it. All that really helps. 

Some days are like this....

Some days it is like this....all day. 

So what is a 24 hour period like for me? Let me break it down for you.  My day will on a good day start around 8:30 in the morning, I will get up, make my bed, go to the restroom and wet my hair, and pin it in place, put on my moisturizer and then go to the kitchen to fix my breakfast ...on a bad day my day can start anywhere from 10 a.m. to even as late as nearly 12. There are days I do not wet my hair, or even touch it past a little smoothing. There are days my hubby takes me out for breakfast so I will go strait into putting my make up on and touching up my hair, and be up to leaving the house in an about an hour. Most days however, I take my time with my breakfast, and often can not muster putting make up on till about two or so hours later. It takes me only a few minutes for my hair, but my make up, it can take an hour or more to get ready....unsteady hands, poor eye site and just the lethargy that comes with Fibro actually makes it hard to apply make up, even with a magnifying mirror. I really enjoy playing with make up and doing my face, but another thing that I suffer from is anxiety as well as OCD and believe it or not doing a cat eye or winged liner, something I do nearly each day, causes a melt down a lot of days...aging skin and hooded eyes does not help! If I am really exhausted, the melt down can even make me just clean off my make up all together many times just trying to get it right, ending up with no make up at all. 

If I do manage to get past the make up, on a good day, I then have to decide if I am up to getting dressed. YES, sometimes I do a full face of make up and am then so exhausted that I just stay in my PJs . But if it is a really good day, or I have places to be and things to do I force myself to get dressed. I actually feel better getting dressed, even if I am not going out...but there are days clothing just hurts. Yes, that is right, clothing hurts. Best way I can describe how I feel physically is that I feel as if I am coming down with the flu, my skin hurts, like a giant bruise, so clothing can be painful unless it is super loose. I suck it up when I get all dressed up with all that it takes to dress retro/pinup....I dream of owning about a weeks worth of 1940's/early 1950's housewife dresses, looser fitting, but still pretty. 

Once dressed, I do my chores, run errands and I walk to do the latter, no matter how much I hurt, I KNOW that exercise is very, very important. I stopped walking as much over the Summer and now this Winter and I can feel my body breaking down, but it is so hard to get started again...when you hurt, the motivation goes out the window. I love being a housewife. I actually enjoy being useful, being busy, I find it is so very relaxing to actually do chores, to clean and make things orderly. I like to bake and cook, everything involved in being a housewife. It is not just a "brand" a "theme", it is my chosen, my desired life. I used to work outside the house, and the jobs that I took were still centered around the same type of work I do in the, cleaning, organizing. It kills me the days when I barely move off the couch. I also truly enjoy my walks, being out in nature, even if I am surrounded by tons of traffic in this area and the air stinks. I may be a home body, but the four walls do become suffocating...isolating as well. 

If I can make it through the day, productively, it is always a better day on all levels. My days can go really quick, either because it is so busy, or because it did not start till it was half over. Dinner time sometimes comes upon me with a surprise, the inability to manage doing it. My husband has often worked a very long day, and still comes home and has to cook dinner. He does not mind, he finds it relaxing, but I feel horrible. We have, as I have shared often, now spend a day pre-cooking and freezing meals so that they are easy to warm up and serve. Most evenings are spent with me just melting into the couch, where once we used to go out to dinner, or even the movies, pain, exhaustion and anxiety keep me home. When bed finally rolls around I am so eager to crawl into bed and fall asleep, but I know sleep most likely will not come or if it does, it will not be restful. 

Insomnia is a normal thing for me. Either physical pain, be it my over all body, or issues with my G.I. system or bladder ( all are from the fibro..side effects of it) , or a busy brain that just won't shut down. Even when I am sleeping, dreaming, I am actually aware of it. There is a term for that, but I can not recall what it is...just know that I suffer from it. I get up, if I am sleeping ( or not) , at least 2 or 3 times a night to use the bathroom, fibro is when it is all boiled down to it over active nerves, so that affects the bladder....there are so many nights filled with netflix, or reading if I can keep my eyes open, or tossing and turning if I can not....before I know it, it is the morning and it all starts over again. This has been my life for the last 29 years. I do not recall what it is like to be any other way. 

Looking back, I can remember times when I managed to work outside the home, before I just felt physically and mentally unable, I can recall getting up at 7 each day, doing my make up in less than 20 minutes and getting out the door for my morning walks. I recall having coffee with friends, when I had friends close by. I can recall seeing movies, before knowing I could not sit in a crowded theater, the hard seats and would not have to run to the bathroom quite as often. But all of it seems a distant memory. All of it is rather foggy. It seems like someone elses life. 

I do not write this post to seek suggestions for treatment, I do not seek pity or sympathy, I do not lead my life that way. I take one day at a time, sometimes, I take one minute at a time, but I take it with a positive attitude, with a smile, as much as possible. I count my accomplishments, and I especially count my many blessings...even on the worst days, even on the days I allow myself to wallow a bit and maybe even cry, I do not allow it to last long. Life could be so much worse. my symptoms could be worse. Life is good....often great for me. There has been far worse times, like the year or so I spent in serious bladder pain that kept me bed ridden, house bound. Or before that the death of our son in law, and the devastation that followed. Before that it was loosing our dream home. Before that it was the death or a couple really good friends or so many family members. There are people who have Fibromyalgia that wish they were dead, that let it define their lives every second. I made the choice, because I am able to do that, to embrace life and be who I want to be no matter what I physically or mentally feel like. It was not always that way, and I am sure that I will falter in my resolve to be this way from time to time, but for now, for today, I choose to embrace life, myself and who I am. I wrote this post to educate, give Fibro another face, and hopefully even inspire a little. 

I wrote this as it was suggested and in a way requested by one of my followers, believing that perhaps she was not the only one who wondered about all this. I do not regret going back to the type of posts that I used to when I first started the blog now over five years ago, just for today, where I shared the deepest, darkest parts of my life and myself, but I have come such a very long way since those days and so now, back to our regular programming *giggle* 


  1. I love that you have shared this and hopefully helped and educated someone who may be suffering or have a family member suffering! Is it a disease linked to anxiety? Anxiety runs deep in my family with an aunt who could not leave the house ands my sister and I with driving issues. Also, shopping alone is very difficult! Ha ha ands I attribute everything else in my life to age! I frequently tell my husband I'm getting sick ands then the next day im fine. I have thought this was allergies. What was your turning point that made you think something was really wrong? Well, I'm so chatty and still have questions! Ha ha....this is jackie

    1. Jackie...
      They don't know what causes it. It can develop from a traumatic experience or health issue...I was very sick as a young child and had a less than ideal childhood at times. It is thought to be an auto immune disease. Anxiety is a side effect not a cause. Stress can make it worse. Because it effects the central nervous system and surrounding muscular system, everything in the body is effected. Even sinuses. I encourage you to read the page devoted to the subject, link is in the top of the blog, and there is a lot of valuable information. Looking back I had symptoms my whole life, it wasn't till I was talking to a friend who got diagnosed and told her my symptoms that it even entered my mind. I was not diagnosed for three more years...officially anyway.

  2. I too suffer from fibromyalgia having been officially diagnosed several years ago. I take medication which has done an amazing job drastically reducing my flare ups. I can feel when a flare up is coming on. My whole body almost feels tense & certain trigger points start aching. Sometimes I have my husband massage out the painful trigger points & I just cry or yell out from the pain. The spots are unbelievable tender. I recently acquired the book the permanent pain cure by ming chew. It discusses knots in the fascia & Active release techniques to release them. One thing that really resonated with me was the importance of drinking water to keep the fascia hydrated. I admit I have always been bad at drinking water. I made the change in November to drink the recommended amount of water & it's helped with my pain levels a lot. Thanks for sharing this part of your life with us Ruby. It's hard living with an invisible illness because family & friends often don't understand. It's always nice to know I am not alone in this struggle & that it's not all in my head. Bisou xx

    1. You are sadly not alone...but yes it is comforting isn't it. I am glad you found a medication that works for you. I seem to have horrible reactions to all medications. Just my luck! My husband is always willing to do as yours does, and it is a God send. Monthly professional massages help me too. Yes, water is important!! It is hard to not look sick, but feel that way, but all we can do is fight the good fight and carry on, one second and one movement at a time..sounds tright, is that how you spell it? I dunno Fog ruins my spelling..good excuse right? Hang in there darling!

  3. Hopefully you got my comment....ugh, technology!

    1. Jackie if this is you. Yes and responded

    2. Jackie if this is you. Yes and responded

  4. The very gentlest of hugs to you my fellow fibro fighter. Thank you for speaking so candidly and confidently about your struggle with this often debilitating, incredibly complex, still largely misunderstood (very much including by the medical community itself) condition. You are a fibro warrior, a very strong soul, and an immensely inspirational person.

    ♥ Jessica

    1. I had no idea, dear lady...gentle hugs in return. It sickens me how many of us are out there! Thank you!


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