Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Fibro sucks EVERYDAY…

… because it hurts, EVERYDAY!.

Some days are more tolerable than others, and some days are just outright excruciating.

 A GOOD DAY is just a dull and annoying pain that is always with you.

A BAD DAY is rather dying than moving, or talking, or thinking, or even breathing because all of it hurts.

What Are the Symptoms of Fibromyalgia?

Symptoms of fibromyalgia include:

…because it is invisible EVERYDAY, even though I am not.

On most days I look fine, but I just can not function well enough to match the image. I often feel as if I have to explain myself , and the explanation is most often Fibromyalgia. 

 Often there are the days that I just don’t bother, I don’t bother to dress, I don’t bother to do my hair or put make-up on, I don’t bother to make myself presentable, because I might look too healthy for the way I am feeling.

…because EVERYDAY, the productive part of my day just dwindles away.

Fibromyalgia symptoms intensify depending on the time of day — morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time for most sufferers. For me this is very true, so what it boils down to is I basically have a small 4 hour window of active productability each day. No wonder I can never get things done. And I complain of life getting in the way of life.

…because even the people who are the closest to me EVERYDAY, will never fully understand what it really feels like or means to have Fibromyalgia.

They know I have it, but I always have it. For them it is the same old, same old… you are sick, you are tired, you are hurting, etc, etc.

But for me it is never the same, it is never the same old, same old… What makes one day or one moment different from the next? Only the degree of pain and how well I can handle it and what comes with it. Sometimes I even find myself surprised at how bad I am feeling, because I hadn’t felt this bad in a while or because I never thought it could get as bad as this to begin with. Some times I just get so frustrated with the fact that they just don’t understand the pain and the difficulties that come with Fibro. Yet at the same time I don’t really want them to because the only way to ever truly understand is to have it. And I wish that on no one.

…because my Fibro doesn’t just affect me, it effects everyone around me, EVERYDAY.

My wonderful husband and terrific son get the brunt of it.

Ron all too often has to pick up the pieces, when I can’t function in just ordinary daily living. Mornings are terrible for me because I wake up stiff and in pain. It usually takes me 2 to 3 hours to bring the pain down to a more manageable level and to shake off the fatigue from having a restless night or no sleep at all, until just before it is time to get up and get going. So he has to help with Leon each morning, (schoolbag packed, lunch made, meds given, and ADHD boy whose meds have not yet kicked in, dressed and entertained until the bus comes), so I can stumble out of my bed, trying to get my act together to immediately begin my day taking care of my soon to be 2-year-old niece at 7am. And all this from a man, who, even with my Fibro, is less of a morning person than I am. He then works all day and has to come home to pick up even more pieces.

By the time 4pm hits I am done. Working from home, taking care of an infant (Nico-8 months) and my extremely rambunctious niece (Kiera-23months) is more than exhausting. Believe it or not changing Kiera’s diapers can be very physically painful for me, what with all the flailing and kicking and chasing that goes on – :?. And keeping up with the house while keeping up with the kids is an excercise in futility. As soon as one child is fed, the next one needs to be fed; as soon as one diaper is changed another one has to be changed; as soon as one set of dishes are done, there are more in the sink; as soon as one toy is cleaned up, a new one magically appears scattered across the floor. Then 4pm rolls around and that’s when all the poop hits the fan at once. I often talk about this being a bad time for Leon, with his ADHD and all the commotion that comes to a head all at the same time, but it is just as bad for me as it is for him (sometimes worse depending on the day). Leon gets off the bus, like a tornado, backpack, lunchbox, books, papers, shoes, various pieces of clothing and a whole slew of questions all flying around at once, at the same time the babies get picked up one after another, and I am trying to hold down some semblance of an organized and structured enviroment for Leon to get on with his homework while dodging “can I PLEEEZ  have a playdate today” questions. It gets quite overwhelming. And depending on how bad I am flaring this is where poor Leon gets the brunt of it. The pain of having to say “No, not today baby, Mommy doesn’t feel good” or “Sorry Leon, mommy is hurting too much to play with you right now” or “go get your DS and sit in bed with me while mommy lies down for a bit”, hurts sooo much more than the actual physical pain of fibromyalgia! I hate letting him down all the time! I hate letting them both down. By the time Ron gets home, I still haven’t been able to completely clean up the house, do the dishes, or make dinner. It’s not for the lack of trying, I do try but I never seem to be able to complete the jobs. So guess who steps in and picks up the pieces? Ron of course. 

…because it makes me look and feel: like a burden, lazy, messy, unorganized, disconnected, ditzy, unreliable, inconsistent, forgetful, whiney, selfish, moody,   (..I could go on and  on) EVERYDAY

  I worry all too often that I am a burden to my family, specifically Ron, who has to make up for what I am lacking as a housewife and mom. And to Leon whose mom can’t just be like other moms.

I am always disgusted and embarrassed by how disorganized and messy my house is. It is all too common to see things piled up all over the place, from papers, to dishes, to piles of clothing or toys. I often lack the strength, the time,  or the energy to keep up with the house, let alone my own appearance.

I dress comfortably (sweats and t-shirt comfortable) and rarely style my hair or do my make-up. Especially when I am really hurting – fibro is invisible enough to look too good to be sick.

I often feel that people perceive me as being very lazy because I just can’t get myself started on a new task and because once I do start one, I never seem to be able to complete it; or because Ron steps in so much to pick up my slack. 

I worry that people see me as being ditzy or dumb, because my “fibro fog” prevents me from being able concentrate or even to finish a sentence properly. I have been known to lose a word mid-sentence, I know what I mean to say but it just wont come out. It also causes me to consistently forget things. (appointments, phone numbers, where the car is, dates, commitments I have made.

I must seem incredibly inconsistent and unreliable to anyone around me, between forgetting things so easily or having to bail out and cancel plans or appointments last-minute due to an unexpected flare-up or my forgetfulness even. 

While I often have the urge to explain why I am the way I am, I worry about talking about my pain and other symptoms for fear that someone might brand me a complainer or a hypochondriac, or say I am using my fibro as an excuse

I tend to get very moody because of the pain, I become very crotchety, and selfish even, because I am so consumed and lost in my pain that I forget to think about how others may be feeling and what they may be going through.

…because the pain changes, EVERYDAY.

The pain changes as quickly and as often as the variables do. 

Fatigue; tension; inactivity; changes in the weather (rain, snow, heat, humidity); extreme temperature; cold or drafty conditions; overexertion; hormonal fluctuations; sensitivity to odors, noise, bright lights, medications, and certain foods; stress; depression; or other emotional factors.

All these things will affect my fibro and to what degree I will feel it and be able to function.

…because Fibro is a vicious cycle, EVERYDAY.

These are the cycles that I tend to fall into:

Vicious Cycle of Non-restorative Sleep

Both FMS and CFS disrupt sleep quality.  Poor sleep, in turn, worsens physical and mental stamina.  Poor sleep also increases sensitivity to pain.  These, of course, further disrupt sleep.  

Vicious Cycle of Inactivity Leading to Progressive Loss of Physical Fitness (De-conditioning)

People with FMS and CFS feel too ill to exercise, and if they push they get worse.  However, not exercising at all is also a mistake.  With inactivity, fitness fades.  This increases vulnerability (i.e. it takes less and less exertion before you push over your limits).  This leads to less activity, which, in turn, leads to lower blood pressure and blood volume. Blood sugar becomes unstable.  Disruptive stress hormones increase, (e.g. adrenalin and cortisone).  People feel worse, so they can do even less.  And the cycle repeats.

Vicious Cycle of Mind/Body Tension

Feeling bad for so long makes people “tighten up”, both literally in their muscles and figuratively in their mind.  Muscle tension increases pain and stiffness.  Mental tension creates feelings of anxiety, and a sense of not being in control.  This causes more physical and mental tension, reinforcing the illness. This is one reason that people with Fibromyalgia are more likely to suffer from migraine or tension headaches. When headache pain is bad, this also tends to make Fibromyalgia worse.

Vicious Cycle of Losing Perspective, Losing Hope

People who are chronically ill tend to lose optimism and also their sense of perspective and proportion. Small set backs feel like catastrophes.  Dips feel like forever.  Anger suppresses immune function.  They may lose hope and stop trying.  This heavy burden adds to the illness.

 …because I have to push myself EVERYDAY.

Obviously when I am feeling bad I have to push through the pain just to get through the day.

But sometimes even harder than that, are the days that I am feeling good and I have to push myself to accomplish as much as I can while I’ve got it in me to do it. Time is of the essence for me because I have so little of it. I tend to be a such a perfectionist and an over-archiver, because I may only have one chance to get it right, I never know how long I have till I fall apart again. I set my standards for myself pretty high because I feel the need to make up for lost time, and for my short-comings. I’ve been told that I tend to go above and beyond for certain things, when it isn’t really necessary. But it is for me, I push myself when I can because I need to feel that sense of completion and accomplishment. And probably because I also need to feel the praise that comes with those things that I do go above and beyond for because fibro can bring me way, way down, I need to be proud of something.

SO THERE!!!

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9 thoughts on “Fibro sucks EVERYDAY…

  1. Hope the weekend is finding you some down time. I had a Pom competition with my 17 year old senior…still paying for the bleachers today, but yesterday was awesome watching her and team perform. We made it to qualify for STATES. Our team is two times champs..it has been a great ride. I just take along the pain pills.:)

  2. Here is my favorite encouragement right now:

    It is not what lies behind us,
    nor what lies ahead of us
    Rather it is what lies within us. 🙂 Emerson

    It is in there, we may just have to dig deep at times!

  3. So Glad you sent me this…..Jill, as I read I am confirming my own exsistence.Some days it sucks to be me and other days i get by. But mostly I can so relate to the 4 hour time slot, thus never really accomplishing anything as I tend to try to get housework caught up and watch my one year old niece. She is both a blessing and a curse somedays.

    • Kathy, Thank you for commenting!
      Yeah that 4 hour time slot can really hold a person back. We seem to have alot in common; Lynn, A niece who is both a blessing and a curse that we provide childcare to, and Fibro. Another thing I think we have in common is perserverance. Without it we would probably just follow that urge to just curl up into a ball and hide away, rather than push through each day no matter what it brings.
      Feel Good!!!!!

  4. foxxfire1970 on said:

    Thank you so much for this wonderful post! I too struggle with Fibromyalgia. I’m a 39 y/o mom with four kids. My husband is definitely a Godsend. He is very understanding and helpful.

    I think that if more people knew about FMS then they wouldn’t be so quick to judge or label us. I get so many people that tell me, “well you look fine.” Oh that just makes me so angry! My FMS may be invisible but, I’m not.

    It made me feel good that there is someone out there that understands what I go through on a daily basis.

    Gentle Hugs,
    Erica

  5. I treat Fibromyalgia in my clinic. I find that sufferers of this incredible disorder live in pain and disharmony every day even when they try so hard not to. It is a difficult thing to live with when you try so hard to be happy and pain free.
    Fibromyalgia connects to so many other predisposed illnesses and symptoms.
    It is hard to pinpoint why you have this dehabilitating problem. But I do want you to know that it is treatable and curable even if sufferers dont believe this.
    Being in pain and discomfort all of the time kind of banishes the thought of cure but it does exist.
    I use Homeopathy as my choice of treatment because it does not disturb the bodies natural balance and it is non-toxic. Medical doctors of cant treat this disease because they would be adding injury to an already injured body.
    There are many medicines that I use in combination for pain and mobility. I erase the memory of the disease from the nervous system by employing the miasim that corresponds with each individuals make up, not DNA.
    It is time consuming and lengthy and it takes a strong person with Fibromyalgia to complete the treatment. Each person is different. I just wanted to let you all know that there is cure and it lies within you and your Homeopath. Please find the right one for you so you are helped. I believe that Homeopathy is wonderful but only as good as the Homeopath. She or he has to really know their medicine and use great intuition for the patient to be cured.
    God Bless you and I send you healing.
    Dr. Berni http://www.docberni.com
    Integrative Health Patient Care

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