Just call me Jiji

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

Archive for the tag “winter”

Too Many Tears in my Ears

I lost it on Sunday. I was just trying to be ‘normal’, just trying to do normal. But it was just too, too much.

Lately that’s nothing new – things being too much, I mean. By lately, I mean the past 6 months, and by things, I mean everything – life, pain, thinking, breathing, functioning, and living all of it.

I feel like I have lost so much of my life in the past 6 months, I was just trying to get a little bit of it back.

Last year was a pretty decent year but I must say this one pretty much sucks big time.  My health started to take a real steep dive just before Christmas 2010. Our winter was brutal. I think we had a total accumulation of about 60′ of snow. We had snowstorm after snowstorm after snowstorm and then some.

My annual winter fibro flare went in to high gear. The extreme cold had its grip on me. I was snowed in, in more ways than one. I pretty much did not step foot outside the house unless I had to. When I did, I would instantly freeze up from the inside out, the pain and stiffness was just too much to bear. I spent my days either in bed or on the couch for most of Jan and Feb, I felt like a bed ridden shut in.

And the worst part was that it was just never-ending. Never ending pain and never-ending fatigue.  I just could not wait for spring to come, for this flare-up to end!

In January, Ron’s car broke down the same night of a big storm. We knew we would have to get it looked at but aside from it being completely buried under a few feet of snow; we didn’t have the money to have it looked at, let alone repaired. He did manage to dig my van out and he used that for the next several weeks which turned in to a few months. I had no car, in an area where a car is practically a requirement. But, I didn’t mind, I was still in way too much pain to even leave the house for the time being.

On top of this all too long flare-up that I was caught up in, I also got real sick in the end of February. It started out normal enough, with a sore throat, post nasal grossness and a sinus infection but then turned ugly in a really bad bronchial, can’t stop coughing, cold sweats, have no energy, and I think I am going to die sort of way. That lasted into the first week or two of April. Thats 2 months worth of mucus people; not what you need during a mega flare-up

So there I was in a never-ending flare-up with a never-ending cold during a seemingly never-ending winter. MISERABLE!

THINK SPRING! THINK SPRING! THINK SPRING!

Spring was just a big tease! She’d show up for a day or two; and then wham winter claimed the next few days again. And this was NOT a onetime occurrence, I’ll tell you that. It seemed Mother Nature just could not make up her mind. But eventually the sun stayed and flowers started blooming.

This is normally the time when I start feeling stronger. But, I came out of the whole sinus/bronchial/death thing; feeling weaker than ever. I just could not function. All normal daily activities were suspended.

The pain was still there, the fatigue, the stiffness, the I-am-so-caught-up-in-this that-I-can’t-catch-up of it all, was STILL there. And the weakness, and lack of energy, that was there, the I just can NOT function at all, the I can’t think straight, I can’t remember things that just happened moments ago, the holy crap my mind knows I’ve got things to do but my body isn’t letting me, was all constantly in the way.

That’s NOT normal, not for this long anyway even with having fibro.   THIS was something different – SOMETHING WORSE – more intense, with new symptoms and different pain.

I am not used to never-ending flare-ups. Nor was I used to the new more intense symptoms. It’s all been just too all-consuming.

And though I have said it before; it doesn’t just hurt me physically, but it contorts me emotionally and mentally too! And then, there is the fallout that affects those closest to me. Ron and Leon being the primary victims.

I feel like a failure as a mother and wife! Poor Ron has had to do so much more than his fair share. He is exhausted and stressed from work, taking care of Leon and taking care of me. My worst fear has always been losing the people I love, like I lost my father. But I now fear something worse. I fear that Ron will grow to hate me, and resent me and my illness.

Leon suffers the effects just as much, in that his mom isn’t all that present. I feel like a non person right now. I am failing the two most important people in my life, and I am failing myself.

Supermom has left the building and the kryptonite which is my illness is killing that part of me. The me I want to be, part of me.

I haven’t even been physically able to keep up my own home. So crap has been piling up since January. At this point we could be featured on hoarders, because life is cluttered and messy and I do not have the ability to clean up after life. Even with Ron’s tremendous help, it’s been nearly impossible to catch up. And when we get close more comes our way and everything is put on hold.

It’s been 6 months of this and while Ron has done everything humanly possible to juggle everything, it hasn’t worked.

It’s time to get back to normal. I just want to get back to doing normal things. I And we need to start at home. Ron and I committed the weekend to doing just that. We were trying to clean up and organize 6 months worth of mess in just one weekend. I pushed myself to the limit. And I broke!  I pushed way too hard, by the end of the day on Sunday I could barely stand straight or move without a yelp or painful grunt. I was spent in every way possible, just struggling to walk from one room to another. Ron wasn’t faring any better. With both of us completely spent, and only one last nerve left between the both of us; it did take much for it to be triggered.

I don’t even remember who or what triggered it initially, I just remember being disgusted with my self and my situation, and questioning “why me?”; I lost it. And I lost it BIG!! I just collapsed into bed and started to cry and cry and cry and I just could not stop.

Today is Wednesday and I’ve been crying every day since.

This year has been all too too much!

There have been way too many tears in my ears; it’s time to find out what is wrong with me.

Something is definitely wrong with me!!

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Last Night’s Storm

The storm went all night long. I didn’t even have to see it, to know it was there. I could feel it in my bones. And my bones, they were a hurtin’

I received the 6am wake-up call from the School District letting me know there would be “No School, Due To Inclement Weather”. Oh Joy, a Snow Day.

That by the way, was sarcasm.

My thoughts went to all the reason’s why I hate the snow.

When I finally got out of bed to survey the damage,

…all I saw was beauty.

Here are the pictures:

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HAPPY New Year!?!???

Well, I had to say it, didn’t I? This is after all my first post of 2011.

Thing is I’m not feeling’ so Happy New Yearish at the moment. It’s part of why it’s taken me this long to post something. It’s not that there haven’t been any happy occasions, events, or news to post about; there have actually, and I want to share them, especially because some very good things have been happening with Leon; it’s just that, well, I am just too damn tired (and in pain) to even think clearly. And not the I just have so much to do tired either. It’s more like the, just walking from the couch to the bathroom and back has me feeling like all my energy just drained out of me and I can’t move, type of tired.

There is no doubt about it; this winter is really messing with my fibro BIG TIME. Mother Nature and Jack Frost have teamed up to kick my butt!

Here is today’s forecast from the National Weather Center:

Winter Storm Warning

  • Statement as of 9:52 PM EST on January 26, 2011
    … Winter Storm Warning remains in effect until 6 am EST
    Thursday…A Winter Storm Warning remains in effect until 6 am EST Thursday.

* Locations… portions of northeast New Jersey… New York City
and southern Long Island.

* Hazards… heavy snow.

* Accumulations… 8 to 14 inches of snow… with locally higher
amounts possible.

* Winds… north winds of 10 to 20 mph with gusts up to 30 mph are
expected across New York City and northeast New Jersey.

* Timing… a wintry mix of snow… sleet… and freezing rain…
becoming a moderate to heavy snow this evening… and a heavy
snow overnight. Up to a quarter of an inch of ice this evening.

Special Weather Statement

    • Statement as of 1:13 am EST on January 27, 2011
      … Heavy snow will impact Bergen… Bronx… Essex… Fairfield…
      Hudson… Kings (Brooklyn)… Middlesex… Nassau… New Haven… New York
      (Manhattan)… Passaic… Queens… Richmond (Staten Island)…
      Rockland… Suffolk… Union… Westchester and western New London
      counties…At 1257 am EST… National Weather Service Doppler radar was tracking
      a wide band of heavy snow extending from northern Connecticut
      through Long Island and New York City.

Snowfall rates within this band are between 2 to 3 inches per
hour… but could be as high as 4 inches per hour in the heaviest
portions of the band in Nassau… western Suffolk… New Haven and
Middlesex counties.

In addition… gusty winds between 20 and 30 mph with occasional
gusts up to 35 mph will occur causing blowing and drifting
snow….and reducing visibilities to 1/2 mile or less.

Motorists should exercise extreme caution.

A Winter Storm Warning remains in effect for the area.

We’ve already had so many storms so far this New Year that I’ve lost count at this point and it’s only January.  These storms have been so frequent and so on top of each other, the effects of which are unbearable. It’s times like this that I am most aware of my Fibro …obviously!

Last week a friend got an up-close peak into my life with Fibro, when she stopped by to invite Leon and me over and found me curled up in a ball on the couch, with my head resting in Ron’s lap as I wept because the pain was that intense. I think it really took her by surprise. This invisible disability suddenly became visible.  Being the wonderful friend that she is, she took Leon so I didn’t have to worry about him seeing me like that.

I actually felt a bit embarrassed that she had seen me like that.

I know I should not be embarrassed by the situation but it is very rare for someone to see me with that bad of a flare-up, and in that much pain, and THAT vulnerable.

Not that I haven’t had flare-ups before in front of people. It’s just that, well, it isn’t always so blatant. The pain is always there alright, and occasionally someone will comment or make a joke about me walking like a crumpled up old women before I can straighten myself up, but usually it will go unnoticed. But Friday’s flare-up, that was something all together different that was what I usually refer to as a “lost in the pain” flare-up. One that gets so bad that I feel completely lost and consumed in the pain.

And with this icy cold, snowy, storm-filled winter I feel like it is freezing me in time and incapacitating me to the point that I cannot even function in my own life right now. I have been out of commission since this year began.  As a result not only am I suffering but so is my family.

The all over joint pain, headaches, fatigue (serious fatigue), insomnia, and muscle weakness keep me from being able to do normal everyday things, including taking care of my family. The burden then falls on Ron; my dear and wonderful husband. So now his life has been turned upside down too.

Not only does Ron leave the house to work all day, but when he is home he has to take care of the things I can’t.

Much to my dismay and intense gratitude he gets up early with Leon every morning without waking me up. He knows that mornings have always been difficult for me, but right now they are even more so. My insomnia has kept me up till anywhere between 3am and 5am on a regular basis. I am thankful because waking up every morning at 7am and functioning on all cylinders is practically unheard of.  I just wish I could do more in the mornings so Ron could get ready for work stress free.

Ron has to get himself and Leon ready at a time when Leon’s ADHD is at its worst. There always tends to be a battle whether it is about taking a shower, eating his, breakfast or getting dressed for school. I usually wake up to one or the other’s yelling or a phone call telling me, my sister is on her way with my niece, whom I care for while my sister is at work. Although, too often this year I’ve had to send her to my mom’s instead.

As it is I am no longer caring for Nico (my friend’s son), but now my fibro is forcing me to give up more days with Kiera too, making money even scarcer.

While taking care of Kiera can be extremely draining, I at least can nap when I need to, while she does. I just can’t see that being included as a benefit in a real job 😉 , so while money is scarce, I am lucky that my sister needs my help. The major downside then falls to Leon and Ron again.

Generally while caring for Kiera or any child, one would think I could keep up with the house work since I am home anyway. Unfortunately that just isn’t always the case, and right now because of the intensity of my flare -up and especially because of how long it has been lasting, there just isn’t any relief long enough for me to catch up on my housefrau duties. It’s embarrassing!

What is worse, is that rather than let it all pile up, Ron jumps in and picks up the slack. It makes me feel so guilty, because I can see it is taking a toll on him.  The getting up with Leon, and battling him to get ready for school while preparing his breakfast and packing up his lunch, and sticking him on the bus; then he has his job to contend with; only to come home and have to contend with me, who is thoroughly exhausted and mostly immobile from the pain and Leon whose meds have worn off and is talking a mile a minute, bouncing off the furniture, and vary needy at this time of the day.

On my normal days, flare-up or not I would have at least pushed myself  to clean up after the day’s activities, get the dishes done, have Leon’s homework done, fed him and ready for bed by the time Ron got home so that he could at least enjoy himself with their ‘Daddy and Leon bedtime routine’. I’ll be honest, I rarely get all of that done, especially during flare-ups, but I do my very best and depending on the severity of the day I have gotten quite a bit of it done. But right now it’s as if my tush has been glued to either the couch or my bed. Basically I’ve been bedridden (or couch-ridden as it were) since the year began, and if the weather keeps up this way I don’t see it getting any better anytime soon.

I worry about the strain it puts on Ron. Add to that the struggles we face financially at the beginning of each year because of how our medical insurance is structured. Between Leon’s ADHD/ODD meds and my Fibro /ADD meds and our regular doctor visits, we have to come up with a lot of cash in a very short amount of time because we have a $2500.00 deductable to meet. That’s not an easy thing to do when living paycheck to paycheck. This is the time of year when our bills pile up. So on top of the strain my fibro puts on Ron he has this to deal with. Now add to it the fact that Ron’s car has died and can no longer be driven, so he has to use my van until we can afford a new car. At least with me pretty much being bed-ridden I can do without the van for now.

The guilt and the depression that comes with it weigh very heavily on me. I feel responsible for Ron’s stress, and I worry about his health.

So with all that, it hasn’t felt very Happy New Yearish   ….yet

As I said before there have been a few highlights to the year so far, involving Leon, so not all is lost.

But that will have to wait for another day.

HAPPY NEW YEAR!!

A Mother’s Guilt is Never Done

Ooooh! Owwww! Ohhh!

I just spent almost an hour outside in the wet, cold, snow with a shovel in hand, breaking my already injured back and ignoring the stiffening of my joints and the labored breaths.

Yes!  Me…..outside…..in the snow! ……Can you believe it?

Now, I am soaked from head to toe!

I am chilled to the bone!

I am pooped! 

And I am HURTING!

Bad!!

Ah, the things we do for our children…

You see, I was not shoveling the walkway or clearing out our cars or anything constructive like that, I was trying to build a fort and make a snowman with Leon. Even though I already knew going in, that I would be paying for it, for days to come. 

We trudged our way through the snow, I shoveled up piles and piles for him to mold into whatever his little heart desired, I stooped down low rolling snow balls around hoping for a perfectly round boulder sized base for our snowman, and I got down on my hands and knees and helped him shape the walls of our fort.

Our fort was no where near as good as Daddy’s are. In fact it wasn’t as much of a fort, as it was a really thin three-sided lip of snow about as high as the curb. Okay so maybe it was a bit higher than that. Leon had to lie flat on his belly to be completely shielded. In other words it was a very poor excuse of a fort. And our snowman, weeeell he’s more of a snowblob with a too small red knit cap sitting on top. But it made Leon happy to be outside in the snow, even though his usual snow buddy could not be there. Alas Daddy was working. And I, …well I would have been very content to just sit around in my pajamas all day long.

Our morning did start out that way. Leon crawled into my bed after Daddy left for work wanting me to get up and make him breakfast. I readied myself to get up and get him off to school and then I remembered the 6:30am phone call that the school was closed due to the snow storm.

“No school today Leon, it’s a snow day, lemme sleep just a bit longer”

If you’ve read my previous post ADHD vs. Fibro you know what direction that could have headed, but didn’t.

I felt guilty. How do I tell my over-active and impulsive ADHD 7-year-old to just sit by and wait while I got some more shut-eye? So I did get out of bed, but I did not do much more than that.

Whaaat???, It was early and there was over a foot of snow outside! Do you know what that does to my Fibro?

Well, I did at least feed him. I gave him a bowl of dry cereal and even let him eat it in the livingroom while watching TV.

After patiently staring at the weather channel that I had put on, for about 20 minutes, he asked to play his DS game instead.

Being that I wanted to continue watching the weather report, I said sure without batting an eyelash, and settled in under my blanket on the sofa while he blipped and bleeped away at his game at my feet.

I ended up dozing off for a couple of hours… talk about bad mommy guilt.

So I had him put away his game for a bit and find something else to do. He started a couple of puzzles, played with his legos, and pulled out a book to read …40 minutes later he is bored again. And I am feeling guilty and just a bit lazy. C’mon it’s pajama day!

Leon was being so patient and so good for a kid cooped up in the house with his ole mom.

I pulled out some paper, scissors, and markers for him and put on a Disney movie. And he happily set out to color and snip away the day, while watching “Akeela and the Bee”.  

So far, so good. My evil pajama day plan was working! Mwaa-haa-haa!

I half read, and half watched the movie from the comfort of the couch. I figured the movie would kill a good two hours….

 Yeah sure, once he was done making his projects, he left the mess and sat in front of the window and just stared out at the snow falling.

When I asked what he was thinking, he said, “Well, I was thinking I want to go outside and play but I know you don’t feel good so I’ll just watch the snow fall”

Ugh! More Guilt. I have the greatest kid. Sure he can be bull-headed and oppositional at times, but he is also very sweet and sensitive.

I told him to go get his snow gear, we were going out! Normally it takes about 15 minutes every morning just to get him dressed for school, but not today he was ready in two minutes flat and ready to go. I on the other hand, was much slower. Poor Leon was just starting to lose his patience.

Being outside wasn’t that bad, …at first. But after a little while I had to sit down and take a few short breaks here and there. The more we worked the stiffer I got. And the kneeling in the snow did not help at all. I was wet and I was cold.

The worst thing about being in the snow with Fibro is that I get chilled to the bone. It literally feels like my bones turn to ice and start splintering from the inside out. The cold becomes the source of my pain.  This doesn’t happen every time, but because this has been such a harsh winter, my body hasn’t had a chance to catch up and restore itself fully between flare-ups.

I needed to get inside, but I could not just leave Leon outside by himself. We only have a front yard and it isn’t completely fenced in. Although truth be told, since he has been doing so well on the Concerta, I am not as concerned as I used to be about his impulses and distractions getting the better of him. My concern with leaving him alone had to do more with leaving him lonely (which often equates to “sad and bored” for him).

We made some calls and knocked on the neighbors door, hoping to find someone to come play in the yard with him. Unfortunately no one was interested or available. So I stayed outside a bit longer until my body just could not handle playing around in the snow anymore. My heart and mind was in it, but my body just said NO.

I gave him the option to stay out and play by himself or come in and play the Wii with me and I would even let him pick the game (ugh). He chose staying outside if I would stay by the window and watch.

I could not help feeling guilty as I watched him wonder around the yard by himself, looking for something ‘fun’ to do. The smile he had, had on his face while we were working on the fort together was gone. I felt guilt and SADNESS, for my lonely little boy.

This time I wasn’t just feeling guilty for being sick and unable to keep up with my child, but also for not having another child, a sibling for Leon to be his companion growing up. And although the decision not to have another child was not mine, I have come to realize it was probably the right decision. But at times like these it’s hard to swallow.

I just had to do something, my heart was breaking for him, but I had already pushed my body to the limit and I no longer could stand up straight. I decided to call my neighbor and asked if I could hire one of her middle school kids to come and help Leon finish building his snow fort. Unfortunately they had, had enough of the cold too and wanted to stay indoors. Oh well, I tried.

Soon after Leon decided he was coming in. Then something caught his eye, and he shouted, “Mom, look I think Lauren and Alex are coming to play with me!”. Sure enough the neighbor kids had a change of heart and were on their way to help build the fort after all. I told them I would pay them for being a mother’s helper.

The fort was beautifully made and Alex took some twigs and spelled out Leon’s name on it

Leon is all smiles again! And so am I.

And the really, really sweet part about it was Lauren and Alex said that they didn’t feel right taking money because Leon was their buddy and they had fun.

Now all I have to feel guilty about is not being able to go to tonight’s Boy Scout Blue & Gold Award Ceremony with Ron and Leon because I can’t even stand up without wincing in pain. 

A Mother’s Guilt is Never Done

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