Just call me Jiji

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

Archive for the tag “emotions”

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!


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!!


ADHD vs. Fibro

If you put a 7-year-old boy with ADHD/ODD alone in a room against  a 41-year-old woman with a really BAD Fibromyalgia flare-up at 5am, who do you think would win???

The weather has been down right crappy this season! With buckets of rain pouring down being my most recent complaint!           

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Fibro and rain make lots of PAIN ~ Pain and Me makes for one very crotchety old woman!!

Add that to no sleep and we are gonna rumble!!

And after the events of this morning my poor son (and husband) can attest to that.

I went to bed last night just shortly after midnight only to lay awake staring at the ceiling for another 2 hours, per usual on a cold and rainy, achy night. At about 3:30am I woke with a start when Leon came running into the room because he just could not sleep. He had asked to sleep in our room. This was not unusual as it happens every so often. We try to deter him from sleeping in our room as much as possible, but at 3:30am after just an hours sleep, I am not going to argue with a child already armed with his stuffed animal, blanket and pillow, so I allowed him to curl up on the floor next to our bed. Sounds cruel, I know, to make him sleep on the floor, however if you were to add Leon to the already crowded bed… NO ONE would sleep.

At some point shortly after Leon’s arrival in our room, Leon climbed into our bed and Ron took the couch. As tired as I finally was, I am a bit fuzzy on how or why that happened.

Then not too long after that I started to feel the persistent pokes in my arm, and my ears picked up some whisperings,;

Leon: “mom?, …….. mom?, mommy?, …(poke),….m0000m!, …..(poke, poke),…..(push),…..(poke),……..(shake), MOM!”

Me: “WHAT!”

Leon: “can we get up now?, I really can’t sleep”

Me: “Leon, no we can’t get up now, it’s (squint at clock) …5 in the morning, just go back to sleep”

Leon: “but I can’t fall back asleep”

Me: “try”

After a few minutes…….

Leon: “okay, I tried,… it’s not working”

Me: “then just lay there with your eyes closed’

Leon: “I did that, but voom!, they just fly open again!”

Me: “Leon!, I really NEED to sleep. Go get a book or something, but I don’t want to hear another sound. Do NOT wake me again until 7 o’clock”

all is is quiet….


                                               I start dozing again………..


Then, the searing pain hits me. It’s Leon. He is trying to bore his head right into my back.

Me: “Yooow!, Leon!, That HURT!”

Leon: “Saaaww – awwe – awwwe – reeee!

Me: “THAT’S IT!!”, “Get out!, Get out of my room right this minute!!

Leon: (crying) “That HURT my feelings!!”, “You are mean”

Me: “And you are selfish! Now GET OUT!!!”

Leon: “NO, NO, NO, I am not! I am not selfish, And I am NOT LEAVING, no matter what!!”

Me: “LEON!!!!!!!!!”

Leon: “Fine!!!” , “I’ll go, but I…. (stomp, stomp, stomp, stomp, stomp),(mumble,mumble,mumble), (SLAM!)

Great, just great!, I think, as I am left lying in bed staring at the ceiling, with a tear falling into my ear and a grapefruit left lodged under my lower left shoulder blade. Well, at least that’s what it felt like still feels like any way.

Here is the part where I need to bury my seething anger, my burning pain, and my incredible guilt, and be a parent.

The anger in me wanted to just leave him crying in his room. The pain that was now encompassing my body was urging me to just stay in bed and try to fall back asleep. The guilt was eating me up and making me want to just run right into his room and scoop him right up (as if I could) and hold him tight in my arms and smother him with kisses. The parent in me knew that there was NO WAY, in heck, that I could leave this child of mine to his own devices. Not this early in the morning, not unmedicated, not stewing in his own anger and hurt, not feeling so dejected and sad. Yet I wanted him to understand that he has to follow the rules, he has to stay in bed, he has to do as he is told, and he needs to allow us to sleep in the morning and I wanted him to know what he had done really, really, really, hurt me.

Being that it was now almost 6AM, I calmly told him to stay in his bed and think really hard about everything that had just happened until 6 o’clock, and then he was to come get in bed with me so we could talk about it and what we were both feeling.

I knew that I was not going to be able to get that extra sleep I still so desperately needed. Aside from the fact that without his meds to help him control his impulses, the pain that I felt was not going to subside anytime soon.

While waiting for Leon to find his ‘Aha’ moment I was reaching mine. I started coming up with rationals for Leon’s behavior while trying to justify my own.

ADHD vs. Fibro?

Poor Leon, he can’t help himself – the meds as much as they help him, they also cause some sleep disturbances, ….yeah well, Fibro is no trip to dreamland either, in fact, it’s quite the opposite.

And no matter what time this kid wakes up or how long he has or hasn’t slept, he gets up with an over-abundance of energy. His brain says “go,go,go” and he “go,go,goes” he just can NOT keep still! Meanwhile whether I have 12, 8, 4, or 2 hours of sleep, if I am caught in a flare up, whether it’s due to the weather or any other reason for that matter, I wake up in a crumpled up ball of stiffness and pain, my brain may want to go,go, go, but my body says no,no,no!

Then there is Leon’s ever present need for attention and closeness, that is at it’s strongest in the wee hours of the morning due to a lack of self control because he hasn’t yet taken his meds for the day and his SPD need for deep pressure contact…. vs…. my ultra-sensitivity to light, sound, and (especially) touch, in the mornings (made worse during a flare-up) at the exact moment that he wants to talk, and talk, and talk, and talk while cuddling up real close, all while he can’t sit still. 

My kid is a cuddler and I LOVE that about him, but when he comes at you, it’s with the force of a Mack truck doing 100MPH. Pit that against my screwed up pain receptors that amplifies the perception of pain one-hundred-fold (or worse), and then lets the pain linger and linger, there are going to be sparks.

This morning there were big ones.

6:01 am-

Leon: “mom, can I come in now?”

Me: “Yes, …come here, I think I need a gentle hug”

Leon: “me too”

 After the small  lecture about listening to one’s parents and doing what you are told, we sat talking some more, with him in my arms being real careful not to move too much, as I explained how  fibromyalgia works and how it affects me. I explained that  in some ways, my Fibro is like his ADHD.

Me: “Just like the way your ADHD makes you think and react to things differently, and sometimes you get really really frustrated and angry with it and don’t always act the way you are supposed to, or you’d like to; I get the same way with my Fibromyalgia. When it is really really bad, and the pain feels worse than usual I get really frustrated and angry too and react to it very very badly. And I am sorry for that. Just like sometimes you have to really try to work even harder at how you let your ADHD affect you, I have to really try to work harder at how I let my Fibromyalgia effect me.”; “so maybe we can try to help each other out, like when things are going wrong and you are not as controlled as you’d like to be, I can help you find better ways of handling it”

Leon: “and when you are hurting a lot I can give “Grandma Great Hugs” (there is a story behind that – but that is for another time – basically it translates to soft, long, hugs)

Me: “Thanks, honey, and I am really sorry that I let my fibro get the better of me, but what you did really really hurt a lot and it was hard to control how I was feeling but I will try harder next time, I hope you can forgive me”.

Leon: “I do, but mom? can I tell you something?”

Me: “of course sweetie”

Leon: “You really really hurt me too”

Me: “I did?, How did I hurt you?”

Leon: “well you hurt my feelings when you said I was selfish”

Me: “well Leon, I feel like you were awake and you really really wanted to have someone be awake with you so you kept talking and talking and moving and moving, and then you pushed your head into my back really hard so I would be awake too. I thought that was a little selfish”

Leon: “but mom I wasn’t trying to push my head into your back, I was just trying to rub (nuzzle) my cheek on you, I just wanted to get closer to you”.  

Me: “well maybe that was part of  it, but maybe you were hoping to wake me up at the same time?”

Leon: “a little but I just wanted to cuddle, we haven’t done that a lot in a long time. And besides it still hurt my feelings”

-He was right this winter’s flare-up has lasted longer and been harsher than any in the past. Cuddling with a moving Mack truck isn’t the most appealing prospect right now.

Me: “well I am sorry that I hurt your feelings”

Leon: “and I am sorry I hurt your fibro, or whatever it is”

We talked some more, discussing our feelings and ways we could help each other more, and about how no matter what we will always love the other more…

What started out pretty miserably ended up pretty nice in the end. We had a really really nice heart to heart. Hopefully the first of many!!


If you put a 7-year-old boy with ADHD/ODD alone in a room against  a 41-year-old woman with a really BAD Fibromyalgia flare-up at 5am, who do you think would win???


in the end…

                            …LOVE WINS!












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