Just call me Jiji

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

Archive for the tag “chronic pain”

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.

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I think I may be part Hedgehog

I just figured out something new in the world of; whatever the
frak is wrong with me.

When I get agitated, frustrated, or upset my quills come out. At
least that’s what it feels like,

…only my quills aren’t fine little hairs that stand on end. My
quills are invisible and feel like really long sharp needles attached to nerve
endings that are slowly trying to make their way out from under my skin.

I know sounds horrible; imagine how it feels!

I’ve come to this conclusion based on the day’s activities and the
reaction it caused.

Hubby’s insurance plan is a real sucky one! We have a $2,400 detuctable
that we need to meet at the beginning of each year for our in-network service
plan. We are generally broke for the first 3 months of the year, because all
our money goes to the insurance company for all the meds Leon and I take on a
daily basis.

Well if that isn’t bad enough, our insurance plan demands another
$2,4oo for any Out-of-Network services. So why don’t we stay in network?
Because we can’t find a damn In-network doctor to see us. And by us I mean Leon
and I.

Leon needs a therapist, as well as a social skills group. I have
found two doctors that come very highly recommended, BUT… they are of course
Out-of-Network. Then there is me. Woe is me.

At my doctor visit yesterday with my primary care doctor, I was
advised to seek psychiatric care…. oh and here is a new prescription for even
more meds. In case anyone is keeping score that’s 10 pills a day. As my friend
Kim said “my mom doesn’t even take that many”

It’s frustrating; however, the advice isn’t wrong. I think getting
psychiatric help would be a plus, providing I can find one that I am
comfortable with. I think I definitely do need to speak with a therapist to
help me untangle this life that seems to have gotten completely out of control,
and if that person can also help me reduce the amount of medication I am taking
that would be excellent.

So today I printed out the list of in-network doctors that are in
a 10 mile radius. I was on a roll, and getting things done today. I was pretty
proud of myself for not putting it off. It was time to do some research, I hate
the idea of randomly picking out a doctor that is going to be picking my brain
and telling me who I am, from a list. I much prefer to have a recommendation
from a friend or a referral from a doctor. Unfortunately I am the only crazy
person among my friends so no help there, and as for doctor referrals… well
let’s just say that apparently none of the “good” doctors take my
insurance. So it was between me and the computer to decide who I would choose. Unfortunately
the computer was no help AT ALL! I was hoping to find some reviews on the
doctors on the list to help me choose. Ummmm, Yea, No!

As the time passed and I hit road block after road block I got
more and more frustrated. I called doc after doc after doc, and I was getting
nowhere. Some numbers on the list where wrong, some were fax machines, some had
terribly rude receptionists, one receptionist asked me why I needed to see the
doctor, and when I said, “depression…….and some issues with ADHD, I
guess”; her response was, “Oh, he doesn’t treat that”

What? What the what? Okeeeee…. moving on. One only specialized
in substance abuse, another in geriatrics (I was too young, go figure), one
doctor whom I was actually able to find a review on, now practices two states
over; and then there was the one with whom I spoke to directly, and it wasn’t
until I gave him every last detail about me that he realized I was calling
about his practice in the county that I live in rather than a neighboring one.
Unfortunately he isn’t seeing new patients in my county. I also skipped around
on the list, picking and choosing friendly names. Silly, I know but the names
were all I had to go on and well, I don’t know how to say this without sounding
a bit prejudice, which I am soooo not, so I’ll just say it very plainly as, I
prefer the doctor with whom I am going to spend a lot of time communicating
with, to have english as their first language. No disrespect intended but if I
can’t understand the accent how can they help me? So I skipped quite a few
names until they were all that was left.

Four hours later, I still haven’t found a doctor and I am hurting
and uncomfortable and realizing that these weird pins and needles/prickling
thing was getting worse the more I agonized over finding a damn doctor. And it
isn’t just pins and needles, its worse; it’s like a million needles trying to
escape my body all at once. In my arms, my hands, my cheeks, my lips, and on
the back of my neck.

So yeah I think I may be part hedgehog. Don’t they get all sharp
and prickly when they are agitated??

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!} 

I Nominate; My Superman

I recently found this on  ellen ;

Nominate the Amazing Person in Your Life…

Do you know an amazing person who could use Ellen’s help? We want to hear about them! Tell us all about the most deserving person you know, and how Ellen can rock their world. Maybe it’s a family member or spouse who always puts your needs before their own, a neighbor who has changed your community for the better, or even a teacher who goes above and beyond with your kids. This season, Ellen’s gonna keep giving back!
Read more: http://ellen.warnerbros.com/show/respond/?PlugID=433#ixzz1RH3DUlaq

So I decided to nominate My Superman!

Dear Ellen,

I love you and I love your show. You and your show always make my day! You are just so genuine, with a hugely generous nature. You have a way of making people feel comfortable and at ease; like spending time with a really good friend.

Well good friend, I’d like to share something with you about my family, about my husband in particular.

His name is Ron, he is a handsome devil, a smooth talker with an odd sense of humor, a sci-fi geek, who rocks my world, and keeps things balanced in our lives. And he is the most giving and amazing man I know. He always puts the needs of our family before his own.  When I met Ron, he became the man who renewed my faith in hope. In short he is my Superhero.

My family consists of Ron (39), myself (42), and our son, Leon (8)

We have a good life, NOT an easy one, but a good one, because we have each other. Things have always been tough on us financially, and we always seem to muddle through whatever life throws at us, either on our own or with help from our extended family. And for this we have always been truly grateful.

We all do our best to make the most of our lives. But no one works harder than my husband to provide and take care of our little family. I try and do my best too, but I have so many limitations, that I fear he often gets the short end of the stick.

Both my son and I suffer from disabilities that require regular doctor visits and a lot of very expensive medication between the both of us. My son has severe ADHD/ODD and I suffer from Fibromyalgia. We have a HUGE deductible on our medical insurance and given our individual medical needs it is necessary for us to come up with a LARGE sum of money in a very small amount of time at the beginning of each year. He barely makes enough money that we can usually get by living paycheck to paycheck with just enough left over to cover and enjoy the little things like the movies or Cub Scout fees for our son.  But when the big bills come in, that’s when we really struggle.

This year, so far, has really tested Ron’s limits.  Ron’s car died, and while we managed to get by with only one car for a few months we did eventually have to buy a second used car, which is already in need of repair.

In addition to our financial stress, Ron has had to take on additional parenting duties, above and beyond all the amazing things he already does with and for our son, due to the decline in my health this year.

No matter what comes our way, Ron does everything he can to make things right again. He really is a good man, and he puts his all into everything he does. As a husband he is just amazing, not only does he work hard in the office every day, but he comes home to take care of a majority of the household duties, when I can’t, due to my disability; and he still makes time to be a Den Leader in Leon’s Cub Scout troop and spend quality time with him.

Lately though, it seems as if life has really been testing Ron’s limits. My husband’s normally optimistic outlook on life seems to be dimming. Right now, Ron feels as if we just can’t get a break and that everything is getting thrown at him all at once and he just can’t get ahead. Some days I look at him and he just looks so terribly defeated, like someone had just drained him of all his energy. It kills me to see him this way.

This is a man who truly deserves a break. Not only is he an amazing husband and father but he is also a genuinely GOOD MAN!

Ellen, PLEASE help me make my husband’s life just a little bit easier.

Here we are at his sister’s wedding, which also happens to be our wedding anniversary. (I am the one with the pink hair 🙂 )

Me and my Superman!

EDITTED ON Jan 19th 2012 to add:

Hey Ellen,

Being that this IS your birthday-month; I wanted to share with you that May is my husband’s birthday month. In fact, this year he turns 40 on May 13, 2012.

You know incase the SWAGGIN WAGON is in NY around that time???

That’s a hint…. you know incase you didn’t catch it.

Love ya Ellen!!

And my Superman!!!

It’s my party and I can run myself into the ground if I want too!!!!

With this year being as difficult as it has been, doing something I truly enjoy hasn’t been much of an option.

One of the things I really enjoy doing is planning something special and hosting parties for special occasions and holidays. Traditionally, we host big Christmas and Easter celebrations for our family of 17 every year with special extras like traditional Weinachts Teller and Easter Egg Scavenger Hunts, birthdays of course are also real big here, and I plan big too complete with banners, balloons, and birthday fairies. Then there are the smaller  holidays and events that I try to make fun and memorable, like New Years Eve where Leon gets to stay up late and bang pots and pans at midnight; Valentine’s Day where we decorate the windows and make heart cakes; St. Patty’s Day where Leon leaves out a decorated treasure box at night for the Leprechauns to fill with gold and greenery; the last day of school where we have a big get-together in our yard complete with wet and wild summer activities to welcome summer vacation; 4th of July BBQ, which Ron has been hosting for 20 + years; Halloween… etc… etc… etc..  .

But due to all my health issues this year, I just haven’t had it in me to make these special events happen, I even had to cancel Easter at the last minute this year because I was too, too sick to make it happen, and that is saying a lot. I was so incredibly disappointed in myself. And for as much as everyone reassured me that it wasn’t a big deal. It WAS a big deal to ME! I loooove hosting the holidays, it was a big letdown for me and I lost out on doing something that makes me happy doing it. Even the Leprechauns made a poor appearance this year because I just could not do it.

Leon always looks forward to the backyard party we have on the last day of school and I was not about to disappoint him or myself. I knew full well that I would pay for it in the end, and that it probably would end up being a bit too much for me, but there was no way I was not going to have our year end “Welcome Summer Party” for Leon and his friends (and for me and my friends too).

The invites went out, and the responses came in. As the date came closer I started to have some doubts. Every day has been a painful one for me at some point during the course of it. There was no reason to believe that this day was going to be any different. I wondered if I would make it through my own party without excusing myself to take a nap. I started begging Ron to take the day off so he could help me get through it (that was unfair of me I know).While he could not take the day off, he did go above and beyond in helping me turn this hoarders paradise back into a home.

Leon’s last day of school was a half day on June 25th. I spent the morning rushing around and breaking a sweat as I was working hard to get the yard ready for 20 + kids and 10 + moms; that I had absolutely no time to wallow in the pain.

It was a really great day, despite the threat of rain. The kids arrived with their moms and headed straight for the water slide, while us mom’s headed straight for the Coconut Pineapple Mohitos.

I didn’t get to sit in a chair for any good length of time with all the running around I had to choose to do. I had a bunch of fun summer activities planned.

While we waited for the rest of the guests to arrive, the kids jumped from pool to pool and discovered the big box of prefilled water squirters.

Once all the guests arrived we picked teams for the water balloon fight. The kids had a BLAST!

There where plenty of other activities for the kids as well.

Like jumping on the trampoline;

playing with Lego;

drawing with chalk;

 building a castle;

 huddling together in pop up tents;

and just all around having fun with good friends.

It was tons of work to put it all together and keep things rolling! By the time I finally able to really take a seat and relax; I was exhausted and in pain. The pricklies on my arms were feeling hot and hurtin, and my legs were heavy and aching pretty bad. As the party was winding down I was dreading the worst part of the party, and that is the clean up. All the work to get it together and only a few hours later it needs to all be broken down again. I was NOT up for it any more.

As luck would have it I have some really amazingly terrific friends!! Everyone just chipped in and helped put everything away in no time, despite my arguments to “just leave it”.  In a blink of an eye the pools were drained, the castle was boxed up, as was the Lego, the chairs were stacked by the garage and the dishes were done. I don’t know what I would have done without my good friends to help me.

And now here I am just days later and I am still paying for it. I may have spent the the last 2 days in bed, but it was definitely worth it to see this smiling face;

And hear him say “mom, thanks for inviting all my friends over and having a party; I had so much fun!”

Yup, it’s my party and I can run myself into the ground if I want to!

… Cause it’s worth it!

Fibro? MS? Or Something Else?

I made a list of the symptoms that I have been having over the last 6 months to reference, at my doctor visits. Some of these are symptoms I’ve had forever (which I have always attributed to my previously diagnosed Fibromyalgia); some I have had several times before but I didn’t realize there was a connection; and some are entirely new to me.

Basically I just want to find out what the Hell is wrong with me? Is it still Fibro? Could it be MS? Or Something Else?

Something is definitely very very wrong. A whole new wrong. A different wrong

The fact is I’ve been experiencing pain since before Christmas 2010 from what I assume stems from a winter triggered flare. This is what my year has been like

  • Have had major bouts of fatigue, tiredness, and energy loss since winter began
  • Feel poorly 80-90% of the time with very little relief in between
  • Been bed ridden – spent all of Jan and Feb either in bed or on the couch – not a day goes by since that I don’t need to rest between activities
  • Can’t do my normal every day activities – include watching my niece –interfering with my ability to earn a little money and help my sister out
  • Had sinus infection turn bronchial in Feb.-mar –it lasted 7 to 8 week duration
  • Am non functional for better part of day due fatigue, pain, and weakness
  • Weakness to the point of can’t lift simple things like a drink, or stand for even short period of time
  • Difficulties standing up straight in the mornings or after sitting for too long
  • Constantly feeling stiff
  • difficulty  walking- feel all crumpled up, stiff, crunchy
  • popping bones all over
  • difficulty lifting- too much pain in wrists, hands, fingers, and arms
  • same when required to use legs to lift
  • TOO weak, everything feels heavier
  • Difficulty focusing/ staying focused – lose train of thought,  can’t finish sentences, forget why in the room or what was just said
  • Can’t get organized, everything suffers, home family friends, life
  • Very Depressed, hopelessness, misunderstood, frequent and long crying jags
  •  Nausea, dizzy and sickly feeling
  • Headaches
  • Patches of prickles , like needles poking from inside out, on arms, neck, face

EXPERIANCING PAIN IN:

  • Hands & Fingers – feel swollen, can’t bend, or grasp. Skin gets too tight. COLD, blue finger tips (both but more intense in right), shake/unsteady, prickly, tingly
  • Wrists – no strength, feel like it’s going to crack right off, prickly , tingly, hot
  • Arms – aches, muscle burn, dead, feel heavy, prickly , tingly
  • Upper arm / shoulder – achy, heavy, prickly  , tingly
  • Neck – stiff, reduced movement, stabs of pain
  • Back of neck/head – stabbing pain out of nowhere sometimes brief sometimes not
  • Face – tingles/ prickles, pins & needles, numbness
  • Lower back- weak cant straighten up, can’t sit long, can’t stand long
  • Legs /thighs – ache, feel dead inside, feel heavy, muscle burn, soreness, stiff, numbness
  • Knees – stiff, feels sand or gravel packed
  • Calves – cramping, sore, tight
  • Ankles – stiff , especially in the morning
  • Skin – prickly, tingly, painful

FATIGUE, FATIGUE, FATIGUE!!!!

  • Have NO energy
  • Fine one moment and not the next
  • Meer walk from couch to bathroom wipes me out
  • Feels like gravity is pulling me down
  • Sudden urgent needs to sit/rest
  • Simple tasks feel like full on workouts – i.e. Walk to kitchen feels like full on hike; doing dishes feels like weight lifting; writing/drawing feels like just did pull-ups
  • Break a sweat just going from one room to next
  • My brain wants to get things done but body wont/cant co-operate
  • Once rested I feel okay and able until I try to do something
  • Even typing wears me out

OTHER PROBS:

  • Forever forgetful – can’t retain or remember info
  • Incontinence – pee when laugh, cough, sneeze, lift, get up too fast, sound of water, see running water, get close to bathroom
  • TMJ – tightness in jaw, wake up clenched, pain
  • INSOMNIA/SLEEP DISRUPTION – cannot get to sleep, pain wakes me up/ keeps me awake, sudden jerking motion, can’t stop moving, can’t turn off body or brain
  • Depression – thoughts of worthlessness, death, long can’t stop crying jags
  • Temperature control – too too cold! Freezing! causes pain OR too too hot, can’t function, need to sit, rest, sleep; difficult finding happy medium
  •  Headaches – migraines, tension, stress, allergy
  • Get dizzy, feelings of vertigo, nausea. Worry I might faint if I don’t sit
  • Eyes get fuzzy, darkness over one eye (left) like it’s shaded or looking through a screen
  • Spend more time feeling bad in a day than I do feeling good.
  • Feel like I am getting no reprieve.

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!!

My Valentine, My Superman

Happy Valentine’s Day to All!

….But especially to my husband and my son.

 
It is because of my husband and son,
that I am a heartless woman.
Ron has one half of my heart,
and Leon has the other half.
 
 

 

 

I fell in love with Ron almost immediately. Our blind date was part fairytale, part racy novel. We walked, we talked, we watched some videos (yes back then it was videos, not DVDs), we kissed, we talked for hours on end; with some more kissing in between, we felt sparks and acted upon them, we had brunch, we walked and talked some more on the beach, we went to a movie and he drove me home. We did all of that in one date; one very long first date – 36 hours to be exact. And we have been together ever since.

I started falling in love with him on that first date. A few days later, I told Andrea, the friend who had arranged our blind date, that I was going to marry this man. And I was not wrong.

I fell in love with him because he was a good kisser, a great listener, imaginative, smart, caring, passionate, sensitive, interesting, spontaneous and good (at a lot of things). And because he made me feel special.

After almost 11 years of marriage a lot has changed in our lives. But not the way I feel about him.  We’ve been married long enough to have had a few ups and downs, but through it all we have always loved one another. That is no surprise to me, it goes without saying; because I know deep within my heart and without a doubt that Ron was made especially for me.

What surprises me, and catches me off guard sometimes, is those moments when I fall in love with him all over again. If only because, I didn’t think our love could get any bigger.

It’s happening right now, in fact. Over the past couple of months I have watched him care for our son and for me like he never has had to before; and it has me falling in love with him all over again.

This self-proclaimed SuperMom has found her kryptonite. It is  the combination of record-breaking cold temperatures and snow with my fibromyalgia. It has kept me immobile and either on the couch or in my bed for months. I’ve had to reluctantly, and with much guilt and despair, hand over my title of SuperMom to him.

He’s had to become SuperDad. Not that he wasn’t a super dad before, but this winter; this New Year so far, can not, and has not been easy on him. In the wake of me having to check out for a while he has had to step up big time. And boy has he ever!

He has had to be the one to get up with Leon when I can’t get out of bed (and right now that’s been 9 times out of 10, instead of the other way around); he’s been the one to get him showered and dressed, make his breakfast, remembers to give him his meds and packs his lunch and then gets him on the bus in the morning. Then he goes off to work for eight hours. When he gets home I am no better than when my day started. It’s gone beyond the usual discomfort and/or pain which was bad enough already, but not only has the intensity of the pain increased but the fatigue and the loss of energy has me so incapacitated that I can barely participate in life right now. I know that the weather is a major contributor to this change in my life but I suspect that my age and my changing hormones might be messing me up too. What ever the reason, the result is has been less than desirable. Rather than Ron and I working to care for our family together: Ron has had to take on the brunt of the responsibilities in caring not only for Leon, but for me as well.

And while I feel lousy about all of this, I can’t help but feel as if I am falling in love with Ron all over again, and again, and again!

He’s not just my Valentine, He’s my Superman!!

 

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And the WINNER for My Dumb-Ass Move of the Week goes to …

Shoveling Snow!!

Well I wasn’t so much shoveling snow as I was moving it around.

We had 15inches of snow on the ground yesterday when all was said and done. It was quite a beautiful site to wake up too (see previous post)

Poor Leon had a snow day and was stuck at home ALONE with his dear old mom. That would be me – Dear and Old… among other things, like in pain and overly fatigued.

 

We spent the morning playing the Wii (well he played, I got to watch) and watching “Back to the Future”. By 11am I felt we had had enough screen time, I wanted him to go out and get some fresh air, play in the snow a bit, get some much needed vitamin D. But he just kept saying he rather stay in and play Lego. I didn’t argue it, since I had kept him home sick the day before (stomach bug).

Every so often I would remind him of how much snow was out there, and all the cool things, that he could build with it. He finally admitted that he wanted to go out but he was waiting for Daddy to come home first.

I explained that, he doesn’t get home till after 6pm and that it would be too cold and too late to go out then.  He then said “Oh okay, I’ll go out now, but it’s nicer to be out there with someone, and I didn’t want to ask you”, then he added “Well, not because I don’t want you with me; but because I don’t want you to have more hurt from the cold”

I cried inside when he said that. It’s times like that, that I really just hate myself for having fibro; and I hate that I didn’t push harder to have another child (which can also be blamed on fibro). FIBRO SUCKS!!

I told him that I would be okay and I went outside with him (I lied).

When Leon saw the neighbors having a play date with each other across the street he asked if we could invite them over to our yard. I said yes of course but I was sure they would say no. Not because they are mean kids or anything remotely like that, quite the opposite. But because, aside from the fact that they already had their own fort well under way, I think they know Leon well enough to know that he has his own way of doing things and often has his own agenda and doesn’t always compromise so well.

Leon took it in stride and just asked me to call another neighbor, which I did just to appease him, knowing they would decline too. For no other reason than they are girls after my own heart – they do not like snow. Again Leon took it in stride, and asked me to call a classmate, and then someone else, and then someone else, down the line.  You see, Leon does better one on one, rather than in a group and even then sometimes he isn’t necessarily looking for one particular person to play with; he just wants another warm body around.  –That’s a little sad don’t you think? How do I fix that???

I know a few of his classmates that I could have called, that would probably have come by, but the truth is I really didn’t want a play date at our house. I was feeling lousy and I suffer from CHAOS (Can’t Have Anyone Over Syndrome) because I can’t pull myself together to clean up around here. I didn’t want to see anyone, I didn’t want to talk to anyone, and I certainly didn’t want to have to change out of my snuggle pajamas and give up my blanket with sleeves. Having the neighborhood kids over is one thing because once they were done playing outside, I could just send them back across the street. But having a classmate who needs to be driven over, in tales a bit more work and planning. I just was not up for it.

Leon hates to be alone; he always needs someone in the room with him. He would rather read a book in the same room with someone rather than play with his toys alone in his room. The closest we get to him playing in his room on his own is if we are in the adjacent computer room; and even then, he will move whatever it is he is playing with into the doorway so he can be nearer.

I felt bad for him; even though I knew he was fine out there on his own. But the mommy-guilt got the better of me.

So there I was shoveling snow into huge piles for him to make a fort out of, fully equipped with snow slide. The snow was very heavy and there was tons of it. It was definitely my dumb-ass move of the week given how bad of a Fibro-flare I am having, especially when considering the fact that it is the snowy weather that is triggering this never-ending flare-up. Today I am paying for it big time!!!

It was a mistake, one that I knew I was making at the time I was making it.

So why do it?

This is why……

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The things we do for our kids!

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!!

An Open Letter To Those Without Invisible Disability Or Chronic Illness

While surfing the web I caught sight of this really wonderful letter that expresses much of what I feel  and go through. So I wanted to pass this on.

My comments are in purple, clarifying how I feel personally about what is being said in this letter and how it pertains to me.

An Open Letter To Those Without Invisible Disability Or Chronic Illness

 … by Ricky Buchanan

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

I to try to be carefull in what I do. Somedays I am doing just fine, while others I have to struggle to get through my day. My mood can reflect that. I don’t mean to let it get in the way of things, but I am only human.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Amen to that. I sometimes find it difficult to answer the “how are you doing?” question. The typical answer for most people would be “I am fine”. Me, there is no typical. I could be dealing with major pain all throughout my entire body or it could be minor discomfort from a dulled pain in my joints. The pain is almost always present, but I have dealt with it for so long that I’ve learned to endure the minor aches and pains and push through the major ones. So, if you ask me how I am doing, fine doesn’t really cover it. Fact is, I could very well be having a grad old-time and enjoying myself, and all the while the pain, fatigue, and discomfort are still right there beneath the surface. So on the one hand the part of me that if enjoying whatever it is I am doing, but on the other hand, if I stop and focus just on the pain, I am not doing well at all.   

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

While I have had days like this, where I have to sit or lie down even every 15 to 20 minutes or so because whatever it was I was trying to accomplish has left me exhausted and fatigued, it isn’t a daily occurence. Days like that tend to happen when I have a lot going on and I push myself. It generally occurs around the holidays or in planning something big like a party or a trip. When I do have these days it is usually in private. I don’t like people to see that part of my illness. I guess I worry about being judged as lazy or weak, or incapable.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

All of these are true for me as well, especially the thinking and being social part. Fibro fog and focusing issues dull my senses and thinking straight isn’t always an option. If I am not answering the phone or accepting invitations to go out, it’s because I just can’t; it’s not personal

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last-minute, if this happens please do not take it personally.

I have had my share of days like this as well where just getting to the bathroom is a feat in itself. Mostly I can manage to function just fine with minimal pain (but pain none the less) through out the day, but when evening hits that’s when you will see the difficulties the day brought with it. That’s when you will see me struggling just to get off the couch and shuffling across the room stooped over in pain to get the bathroom. 

I used to ignore the need to cancel plans and I would go anyway, and usually end up paying for it for the next day or two. But lately I have found that the need to cancel happens more often now that I am getting older – I tend to  listen to my body more now and choose to take care of myself better, so if I’ve canceled and been a no-show on you; now you know why. 

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated – if I could possibly do it that, I would.

My disability does not keep me bedridden, but I do have good days and bad days, and quite often my bad days can lay me out for 2 to 4 days in any given week. Certain times of the year are worse than others depending on the stressors. Stressors include weather, seasons changing, being over-zealous on one of my ‘good’ days, emotional or mental stress, hormone spike, among other things. So if I say I am not up to it… trust me I am not up to it.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

This is something I know all too well! I am famous for ‘forgetting’ to take my medications and for pushing the envelope on those ‘good days’. Quite often it is because I am involved in something far more enjoyable. I am very guilty when it comes to pretending I am a well person. this goes back to not confusing happy with healthy.  I often have to remind myself that just because I feel well does not mean I am not sick.  

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

I get this. So often people ask, so what are you doing for your fibro? Well, I am living with it. There is no cure, there is only managing it. I take my meds, I’ve started walking regularly, and I keep my chin up.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

With everything that I have gone through, first with constantly being told that there was nothing wrong with me or that it was all in my head (this is going back 17 years when Fibromyalgia was considered – not a real condition – by many doctors); and then going through all the trial and error of finding the right prescription cocktail that would not make me feel worse; I am reluctant to try something new. I did however switch to Lyrica about 6 months or so ago and it is work to help manage it a bit better.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

I don’t mind the suggestions at all as long as there is no expectation that I will run right out and try it. Chasing after this disorder is time-consuming and exhausting and in my eyes a bit of a waste of time. If there was a cure, something that would make it go away entirely and permanently then hell yeah, I’d be right on top of that. But all there is, is management and that is what I am doing. As long as I have found something that works that I can tolerate i am going to stick with it until it does not work anymore. i rather be living than chasing down my illness. 

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

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