Just call me Jiji

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

Archive for the tag “memory loss”

Crap! I think I’m broken again

Well, it is that time of year again, I guess…

I’m screwing  up again and I just don’t have time for it. I want this new year to be a year of change for the better!! So I have a plan to implement.

Being that I just spent about 15 minutes in the arms of  Kiera, my almost 4-year-old  niece, crying as she stroked my hair and wiped away my tears. I’d say I’m not getting off to the best of starts.

Then again, if I am going to have a nervous break down, there is no better person to be around than a little angel. And she is an Angel. (it’s a plus when that little angel doesn’t get a scare when seeing her Tante  Jiji fall to pieces.)

I haven’t been sleeping regularly. My nights are getting  later and later (or earlier and earlier, depending on how you look at it). In the last week I’ve gotten to bed at 4:30am, 4am, 2-ish …I think (I was proud of myself  for that one, after all I managed to get to bed early that night.) Then it was 4am again, and 5:30am and last night/this morning I went to bed at 6:30am. It’s not healthy, I know. What I don’t know is why I am like this.

It’s as if my life runs on a different clock than everyone else’s, everything is backwards. My days, find me excessively tired and exhausted, and my body seems to work against me. I hurt physically, which  for the most part I am used to being a problem. My fibro flares are definitely worsening with each new episode as time goes on. I don’t know if it’s an age thing or a female thing or just the normal course fibro takes. Personally I am convinced that I have MS, but no one else is. So I guess I must be wrong.

Mentally I feel so freaking scattered, confused, and somewhat lost. My memory is getting so bad; …scary bad, like I am going nuts, bad. I can’t seem to string my thoughts together, let alone complete a normal sentence or have a clear conversation with someone. Even writing this right now has been difficult, it’s taken me over an hour to get this far. my thoughts and emotions are all over the place, They all want to come out but some how they are all scrambled and tangled and stuck in my brain and driving me mad. My words have been coming out of my mouth all wrong, I want to say one thing but something else completely unrelated comes out. It’s called something, when that happens, but I cant remember what it is right now (HA!, go figure)

 –Google Search– Aphasia! that’s the word, Aphasia. Do I have aphasia? Hell if I know. I am not sure of what it is exactly I haven’t really researched it. And it’s probably best if I don’t…. 😉

During the day I feel as if I am just getting through it, one wobbly step at a time. I occasionally have spurts of ambitious thoughts of productivity, but they  seem to get squashed once I try to do something about it. I get too physically tired, too easily and abandon whatever it is I am trying to accomplish. Nothing ever gets done… , not completely anyway.

One of my changes for a better new year includes changing my sleeping habits for a happier healthier me. So the plan is to get to sleep before midnight and not staying up all night long. It sounds easy right? But it is not!! And like I said I really just don’t know why I am not sleeping?

I don’t know why my brain feels all foggy and dull and dimwitted and sleepy all day. And I don’t know why it starts itself up and runs at full throttle at night. It’s as if the dimmer control on the light bulb in my head gets turned all the way down during the day and then gets turned all the way up late at night. It’s as if, my brain is at its most active and productive stages in the evenings. Seriously I feel like I am at my widest awake at night when everyone else is going to bed. AND sometimes I actually end up getting things done. Whether it be doing some writing, organizing files on the computer and backing them up, archiving my photography, and readying them for display, researching my medical and neurological problems, researching ADHD, etc, etc, etc. I am actually doing these things well into the morning. But that’s not to say that I don’t goof off at other times too. There ARE nights that I will promise myself that when Ron heads to bed I will follow, but then when he heads to bed, I just can’t, I don’t feel tired and I know I won’t be able to sleep. So I inevitably  decide to watch just one more show. If I am not feelin’ what’s on the DVR, I will find something on Instant Netflix that I am interested in watching. I if it’s a movie, I may get to bed as early as 2:30 or 3am; but if I land on a new TV series that I want to begin watching I may get so caught up in the cliff hangers, and poor me without an ounce of will-power, will end up having to watch the next episode ..and the next one …and the next one …and so on, and so on, and so on. That’s kind of how I ended up being up till 6:30am this morning (by the way “United States of Tara” – excellent show!!). I do want to add that my lack of will power wasn’t the only reason I was up so late last night. I just COULD NOT sleep. Even at 6:30am – I got into bed, and I just laid there and laid there. And I felt like I was exploding on the inside. All I wanted to do was GO TO SLEEP. The voice in my head would just scream “Sleep already, SLEEP!!!” But I couldn’t and I was just so frustrated and angry; really angry. It was freakin’ 6:30am and I just could NOT sleep.

…….eventually,  I did doze off and slept in until 10am.

So here I am now with only a few hours of sleep, and I am a total mess. The tears just keep rolling and they are not stopping!!! I just want to make them stop! They are giving me a headache that just gets worse and worse with every tear shed. Everything is making me cry. Everything and nothing. To top it off , I’ve got the crazies; my skin is crawling and I just want to rip it off, I am jittery and nauseous and dizzy. I keep pulling at my clothes and my hair, I can’t sit still, I keep jumping up to look for something, but I don’t know what I am looking for, so I sit and I cry while I write, then I get up again and I pace, and then I do it all over again. I am just so tired.

Right now I could sleep, right now in the light of day I could just sleep.  But I REFUSE!! I can’t! I won’t!! I am fighting it. My lids are heavy and they want to close, but if I let myself, how will I ever get back to a normal sleep schedule.

I have been puposely depriving myself  and withholding my naps. That is my strategy for turning  my clock back to the right time zone. And that is a biggie for me. I LOVE my naps. I NEED my naps!! Really I do, especially given my complications with Fibro and the excess tiredness and fatigue I am constantly suffering  from. Naps are a natural and necessary part of my ordinary day, even when I am on a more realistic sleep schedule. But for the last week I’ve held back on the mid day naps so my sleep schedule can match the rest of the world’s. So here I am with a bad case of the crazies; and the tears just keep falling.

Yup, I am broken all right!

Please don’t ask me why or what’s wrong. I don’t know the answer to that and it will only make me cry more. That’s what was so great about having a little angel around. She stroked my hair and wiped my tears and said ” It’s okay Jiji; it will all be okay”, ” I will stay with you and hold your hand and I will be your friend”, “And then Uncle Ron will come home and hold your hand, and he will be your friend too.”  

…Okay, okay, so that did make me blubber all over the place too! But those were good tears. Unfortunately my Angel was picked up early today and I am left here to go cuckoo all on my own. It’s probably for the best though. I am arranging for Leon to be on a playdate right after school too!

ARRRGGH! More tears ….and not so much, the good kind this time.

Where are these tears coming from? Like I said I don’t know exactly, but there are a whole slew of possibilities ..or even the combination of a few or all of them. Probably the later. Lemme see, I am sleep deprived; depressed; in physical pain; menstruating; I am self sabotaging myself; I have temporarily fallen off of my meds (and my rocker too it seems); I still feel over-whelmed by life – which is not part of my new year’s plan; I have too much to get started and I don’t know what comes first; I forget to eat until I remember and then I eat the worst stuff on earth (i.e.. A whole bag of chips for dinner) so I am probably malnourished; I can’t think straight; I have trouble staying awake during the day (even when I am on a good sleep schedule); and there has been such sad news going on all around me lately; and, and, and I am just broken, really, really broken.

An acquaintance’s husband died on Dec 23 with no warning, leaving a wife, a 7-year-old son and 3-year-old twins and barely any money to make ends meet. My close friends, Heather and Eddie are going through hell trying to get answers as to why their sweet little boy keeps ending up in the hospital, most recently being in the ICU throughout the Christmas/New Year’s holiday. My mom’s sister, my Tante Angela, died this past Monday. And just today I found out that a classmate’s, of Leon’s, mom died on New Years Eve. We had met while the boys were in pre-school, she was such a nice person and a great mom. I always have such a hard time hearing about young children losing a parent. So yes, life has been a bummer lately and the news has been really, really sad. And did I mention the whole I am menstruating and therefore I am more hormonal and cry-ee than my usual self thing?

So yeah, I think I am broken. It is definitely not the first time (and probably not my last). Today was just the day I SNAPPED!

…it has taken me all freakin’ day to write this; emotional outbursts in private and all; so I am taking my evening medication and some Tylenol PM and I am getting into bed now and I am going to pray for sleep, and a tear free day tomorrow. Good night.

Today was the day I snapped and tomorrow is the day I will begin again, to fix it.

Advertisements

A Day in the Life of…FibroFlareGirl

AKA….. Test Results and Other Ramblings

Mmmmornin….

{Left the good in good morning out on purpose, btw}

4 pills with breakfast -YUMM

{sarcasm}

Wait a while to see if I am able to move more fluidly…

NOPE… Joints still poppin, can’t straighten up, numbness in hands and fingers, no strength in arms or legs.

{Crap! now how the hell am I going to get out of this couch?} 

Hmm Today is particularly bad

 {Again}

Okay bring on the Vicodine

 {Crap that’s 5 days in a row now – I must be flarin up again}

On with my day, cause life must go on….

{People to do and things to see and all that rot…} 

….feelin floaty and a bit dopey

{make that a LOT dopey} 

and some what embarrassed in public situations….

{ Is she talking to me?

 Wait what did she say? I spaced out for a sec,

 Was that question to me? Did I answer that already?

 Oh No am I repeating myself?

Oh No am I repeating myself?

Am I slurring out loud or is that just in my head? }

Made it through the day 🙂

{Barely}

Night comes – take 3 more pills at bed time.

{for those of you not keeping count thats 7 pills a day and then some as needed}

Good Night Moon.

{Good Night Bafoon}

Oh and by the way ALL my test results came back NORMAL!! Yay me!!!  ….There isn’t a thing wrong with me. Hoorah!

{ MORE sarcasm!} 

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!!!

Post Navigation

%d bloggers like this: