Fibro Finale

This past month has been excruciating, with the weather being so wet, and trying to keep up the house between floods and trees falling, the stress has peaked my pain threshold to maximum.  Being the only adult in the house means when I'm struck down with pain, nothing gets done. My physical stamina has been drastically diminished from years of reduced activity, and when I have a good day I tend to over do it to catch up from all the bad days and then that inevitably results in a crash, which means NO energy, as if sedated, LOTS OF PAIN, all over my body, muscles and deep bone aches.
I'm having difficulty motivating my 20 year old to do anything to help! Cutting grass and cleaning up after himself is a constant battle which when confronted results in a huge fight so I walk on tender hooks trying to be diplomatic but there is no diplomacy left, only consequences, like taking the car away, which again means war is declared.
I don't know how to get help anymore. I just watch as things fall apart, things that I would never have allowed before becoming ill are now standard practice like the house being a mess. I am embarrassed when my son brings his friends in...I don't understand how he has such little pride as to let them see the squalor his room is in.
I suppose this is when you start to scrape the bottom of the barrel! When you really begin to think "is this what it's going to be like forever? Is it going to get worse? How can I possibly get out of this situation ?"
I have no answers anymore...no cute little sayings to sweep the truth under the rug. It seems pretty hopeless to me.

Fibromyalgia

When dealing with the symptoms of Fibromyalgia, one of the things recommended is to avoid stress! That's pretty hard to do! Although Fibromyalgia is not a fatal disease the main causes of death amongst it's sufferers is suicide and heart attack.  I have had 2 heart attacks since 2007 and been suicidal countless times.  To avoid stress when you're trying to live on a small fixed income, trying to look after all your typical activities of daily living which cause you unbelievable pain in places you never imagined you had muscles ( armpits! ). Add migraines, brain fog, kinda like mini dementia and extreme fatigue where there are periods of time when you can barely get out of bed to let the dogs in and out.  It's a daily struggle. Movement does help to relieve some pain, but adl's can put me into uncontrollable pain episodes from vacuuming, washing a floor, taking out the garbage! Ridiculous right? I used to be able to work full time, be a single Mom, volunteer at several different organizations, be a part of a worship team playing guitar and singing, walk my dogs daily, keep my house and garden well kept, heat with wood and all that entails, plus pursue various hobbies.
Now I only leave the house if I have to and eat a lot of cereal!

My second promise for 2011 is......

....Not to make promises I might not be able to keep!!!!! The same old same old....take 1 51-2 year "old" woman....add a splash of hormonal instability..combine it with waves of depression, heart disease, and chronic, often debilitating pain and fatigue.....( have I left anything out?)...oh yes....memory problems that often lead to walking in circles around supermarket parking lots...wanting desperately just to give up and walk away from the loaded cart, in favour of some pain meds with a coffee and a 30 minute break (I really really really have wanted to do that soooooo many times) and speech heresy....you know Heme Dopot...that sort of thing spills out of my mouth randomly and makes such perfect sense to me that I just can't understand why the checkout girl, and half the line behind me, are laughing!!!!  Anyway....here I am again...another International Crisis, Egypt, (it's really hard to spell that...I want to put the y in before the g and then i have to change it!) What an amazing mess we humans are in, and how interesting it is to watch as our entire planet seems to be wrestling in the arms of God. I used to be pretty certain that 2012 was just a movie title, but now I'm beginning to wonder.....aren't you? I mean...come on....the snow's so high here the birds are walking to the feeders!!!!
By the way....hey to Ange...thanks for checking in on me!!!!
Remember....I only come out during International Crises!!!!!!

The Slide

It's been a long, slow, slide down the slippery road to hell this year.  My depression began in July, and slowly dragged me into the muck and mire of "The Pit", where I've spent considerable time soaked with tears and drowning in dark thoughts, researching suicide options and their messiness ratings...where would i go so that I wouldn't be readily discovered, especially by Matt...and all the other "thinking" that goes with this phase.  How worthless I am....how much I've disappointed everyone, and keep disappointing them.  For awhile, I had reached a stage where as long as I could "work" my way to being valuable....by doing the most I could do to be thought well of...not ever expecting to be cherished, although that's been my life's desire....but enough to earn some "credits" on my life's account that's forever in the red///I can't do that anymore.  I'm too sick to do all the things I used to do...to be able to help other people, and therefore earn my merit...now I am worthless and valueless again.  This is very frightening because I thought the Lithium was my lifeline, but it appears that after 3 years maybe not.  This is not comforting.  The next course suggested is Electro convulsive therapy, which I have assisted in administering, but have never received, and it just seems such a drastic and barbaric treatment...and what happens if it doesn't work?  What relief can I expect and from where? I don't know how many more trips to hell I can stand, and the recovery process though dramatic in the removal of dark thoughts, the weepy sadness continues, and it seems as if I'm stuck only half way back. At 51 I'm an old soul with more to look back on and little to look forward to.  That's no comfort either.  This load is getting harder and harder to carry...the burden of all that has occurred after my innocence was taken from me.  People who don't understand think that "abuse" is a singular event, or span of time that ends when the touching and manipulation ends, but unfortunately it's not.  The child that I was....the potential that I had as that intact child with all the hopes and dreams of that innocence was murdered, and only the gaping wound remained, waiting to be healed....waiting....waiting to be healed.  Try to imagine a child....with that open wound...in your presence.  Would you expect that child to think, feel, behave and grow as if he/she wasn't wounded?  Would your expectations be that they think, feel, and behave as if they aren't wounded?  That is most often the case...the walking wounded, never be able to achieve or fulfill the expectations that existed before the murder...before the wound...go through life emotionally, spiritually, and very often physically wounded by addictions and illness...disabled.  Like a wounded veteran with an amputation...walking with a limp...except that no one blames them for walking with a limp...no one says...why did you make that choice to get blown up, shot at.  It would be so wonderful to share that burden....be relieved of having to carry the weight of all that guilt....to have the full extent of my injury acknowledged not for the purpose of blame, but for the purpose of validation....This road has been long and hard....and very, very lonely. I want to get off this road, but I don't know how to make it happen on my own because relieving some of my pain means that someone else must take it on, and that will cause them pain.  I'm not sure whether self protection is the reason behind the lack of understanding, or simply just plain old lack of understanding.  My sister called me the other day after meeting with her accupuncturist and seemed very surprised that when she shared my history with him of Fibromyalgia etc. he immediately asked if I had been abused!  It never occurred to me that she didn't know that the two were related!!!

When U can't do anything....just LAUGH!

First things first...Hey Tamara...Thank You for dropping in...hope you'll come again and share some of your own most entertaining moments!! Sorry it took so long for me to follow up, but the explanation follows...
Well, as it turns out, maybe I was a little premature in my announcement of return to brain activity!!!! I spent a great deal of time in bed...but not able to sleep.  Matthew has also not been able to sleep so the days have been long, and I have sometimes been irritable, which I try very hard not to be.  The state of our house inside, was driving be beyond frustrated, and I have been trying to catch up, with what energy I currently possess, and keep on top of Matt's vast trail of garbage, plates, wrappers, clothes...well you  get the picture.  So I had been doing quite well (I thought) and had even taken the kids to Youth in Brockville and doing some shopping (although limited because I started the process on empty!).  I decided that I would repeat the process this Wednesday (youth group is 6 - 9).  I dropped of the kids, and went on to do my shopping.  An hour or so later, walking on aching feet with a throbbing face and head, I unloaded my purchases, and waited at the far end , loading the bags painfully back in the cart while wondering if I had any pain meds with me, as I've still got to unload them into the car, pick up the kids, unload kids and groceries at the other end, and put it all away!!! With this in mind, I congratulate myself that I have achieved so much on this day, and that I should be proud!  You know what they say about pride?......It comes after the fall....
As I look for the pain pills that I do have, I find that what I don't have is...MY WALLET!
Enough said! Who else has done this?.....now come on....be honest!!!! PLEASE!!!!!!!

Good Day

I had the best day that I've had in such a long time that I won't even hazard a guess...lets just say way in the past, back even before I can't remember anything, but more recent than what I remember about the past!!!Anyone who has difficulty with memory will understand what I just said...and as for the rest of you...don't laugh too loudly because it's going to come to a theatre near you before you blink!!!! I woke up with minimal pain, and got Matt off to school with no problems, then showered (which is work for me and usually wears me out) and headed into town for an appointment. The day was sunny with just enough breeze to keep the black flies at bay, and I had already decided that after I picked up some groceries (you heard right...I'm on a roll) I would take the dogs out back through the woods.  On the way home though, I put in my Hall and Oates CD and found myself volume blasting, singing at the top of my lungs, laying down the beat on the steering wheel, and waving my arms up in the air through the sunroof (when safe of course).  I reached Athens way too soon, and being the small village that it is I didn't feel that it would be entirely appropriate for me to continue this behaviour all the way home so...I didn't go home!!! I drove down to the lake and through some back dirt lanes until my vocal chords were straining, and my ability to hold a note longer that 3 seconds had failed.  So I went home and took out the boys. Well they were ecstatic since I'd spent almost a week in bed, and off we went, peeing on every blade of grass and tree root for the first 15 minutes and then "the run" begins.  Of course I start to get sore, but you have to see Dudley's face as he tears off, his long thin body on those short little legs, and he's smiling....I'm totally serious, he smiles! You can't beat that! We go through a wooded trail, then out into a wetland, where the turtles scurry back off their tanning beds as we pass, and the beaver slaps it's tail in annoyance at out trespass!  Then there an apple orchard, which in a few weeks will be the most glorious place to be...I could sit out there for hours.  All of a sudden as we came past the old railroad tracks there was a flurry in the wind of pale petal like flutterings, and it caught me by surprise as I scanned around for the source.  A bush, a small tree....no...the petals were flying not floating, and sure enough the closer I got, and the more central I became inside the flurry I realized that they were tiny "common blue" butterflies!  Hundreds and hundreds of them!!Then Mourning Cloaks flew by, and a black swallowtail and a part of me flashed back to being 10 years old with my Rose's Lime Cordial, a net, and some killing jars, riding my "no speed" bike with the jars rattling in the basket, on my way to pick up Jane Thurley for our daily butterfly hunt!!  I learned allot from those summers by the railroad tracks, back in the days when you could be a kid and ride around until the lights came on without a care!  So what a day...I'm feeling it a bit tonight but I don't care..after Matt went to sleep I was watching "Whale Wars" and one of the guys in passing mentioned a quote as follows...

Below 50 degrees south, there is no law.
Below 60 degrees south, there is no hope.
Below 70 degrees south, there is no God

While I was trying to find the quote I stumbled on a blog by a young man who is basically travelling the world by foot, by rail, by plane (he flies) and by boat (to the Antarctica!!!)  He has some amazing photographs, and one in particular of an iceberg.  I was trying to imagine what it must have felt like to stand there and be surrounded by such incredible beauty!!! It made me happy for him...glad that there are people who are living large...my "living large" is different now, but I am truly blessed.  I put in a link to his site if you want to check it out.A Passage to...

Pain Management - Caution or Cruelty, the thought continues...

Back to pain! Partly because it never really goes away, and partly because I believe that if pain was managed properly, then addiction would not be the issue that it is. It is my Pharmacist, not my physician, who has helped me through this next 10 days by supplying me with a limted number of pills to use until my Doctor comes back from 10 days vacation. I hate to think what I'd be saying now if that wasn't the case, if my Nurse Practitioner and Pharmacist didn't go to bat for me. But then I probably wouldn't be saying anything, because I'd be in bed rotating packages of frozen vegetables around the most painful parts of my body. The other alternative to this is to sedate oneself out of the pain using gravol, or taking my sedative meds early. The kicker here is that I do have a semblance of a life, which includes my most marvelous, son who needs me to be here for him. I count and ration my pills,(It reminds me of Fagin in Oliver Twist counting his money) because if I have an appointment to attend and drive to, I may need more medication than I've got...so that has to come from another day that I have to then write off for functioning ie.walking the dogs or doing laundry or picking up groceries.  Instead I must  stay in bed...again. I am always robbing peter to pay paul. I feel more intensely about my pills when I'm always afraid I'm going to have a flare up and have no help for me which again affects Matt.
I get my limited number of pills for the month, and that's it...there's no room for flare ups, no room for getting me through laundry and cleaning day. So often, there are many thinks that don't happen unless I add my own little helpers to the mix, like Tylenol 1, 4 tabs Q 4 hours,plus a gravol...
I'm not surprised at the "stomach contents" list of dead celebrities...Were they killing themselves, or just taking one thing after another just to get relief that no one physician will give them. This is serious stuff...People are dying because of it, and I don't think they have to.
Why can't I get the maximum dose, and be relaxed in the notion that I have back up for flare ups, and  don't have to keep counting pills, because I'll have enough to deal with not only doing the shopping, but unloading it, and putting it away, and the two days of painful hell that follows it. It would be nice to have one less thing to worry about.

The Perils of Pain...Caution or Cruelty? Whats do you think...

Do you remember that scene in "Terms of Endearment" when Shirley MacLean's character is losing it...well if you don't remember watch the clip below...

Terms+of+Endearment+-+Emma%E2%80%99s+Pain+Shot

I think when anybody gets the diagnosis of a terminal illness their biggest fear is how they will deal with the pain...it's the pain that is more scarey than the actual dying part, and they would be right. So what is our best hope for a peaceful death? One without pain, or at least with pain well controlled. But there's a possibility that may not be the case, as celebrities and the like are dropping like flies having overdosed on amazing combinations of drugs, legal and illegal. We who suffer with chronic pain do so at our own peril. There is a "Patient's Rights" document regarding chronic pain, that lays out the rights of a patient to be given good pain management...but does it happen? My experiences have been very dodgey to say the least. The whole idea of administering narcotics has become a sinister affair...I feel guilty for asking for pain relief! As if I am under some suspicion of being a "drug addict"! I wait for an hour in the waiting room on not so comfortable chairs, while every bone and muscle in my body, neck and head are pounding to the point of nausea. When I meet with my practitioners, we go through all the typical questions, and I'm met with of course information about other therapies such as naturapathy, and accupuncture that I cannot afford anyway, and there is an air of tension in the room. It's palpable! This previous week we had changed my pain medication because of breakthrough pain, but I could not tolerate it. I was wretching, unable to eat, unable to go grocery shopping (we had run out of food) and so totally spun out, I had to go to bed for 3 days...but it was suggested that maybe the dosage was too low?! I am very close to losing my temper when she announces that there really isn't anything they can do until a week on Monday...a week more with no relief from pain, but I am responsible for the care of a 12 yr old boy with ADHD and I don't have relatives just down the street to come in and take my place. I have been ill for 9 years, unable to work for 7, and started narcotics maybe 5 years ago. I have never received the full dose as decribed on the jar, actually 50% less!!
When she tells me again that they can't help me (I had called the office 3 times describing my reaction to the dilaudid and requesting help)and I finally let go and tell her that is unacceptable...there is no way I can go through March break, or any other break, without proper pain management. I understand they need to be cautious and I don't want to become addicted. I have, in the past, stopped taking narcotics, voluntarily, to see if I could function without them, and avoid this awful struggle of aquiring and managing narcotics...but until someone can provide me with a maid to clean the house, do laundry, groceries, be a mom/dad, and do yard maintenence...then they HAVE to properly address my pain without making me feel like a criminal!
This life is a struggle and having your care team on your side is paramount...they just have to get this...rather than assume that someone in chronic pain can just wait...and wait...and wait! Not anymore. This has to change and I'll use my patients right documents if that's what it's going to take. It's funny but we "disabled" people sureley have to fight hard for everything we get.

Sick, sick, sick...

I am so very sick of nausea, very sick of extreme fatigue, and very sick of PAIN! The irony of this is that, other than the pain, the nausea and some of the fatigue, are exaggerated by the side effects of all the medications I'm on for everything else! I take about 20 pills per day. The illness sucks, and the side effects suck. Trying to manage pain is a real problem. Last week I saw my Nurse practitioner about my pain medication, as I have been having breakthrough pain some 3 hours into a supposed 6 hour stretch of relief, so she decided to try me on dilaudid...Well forget it! I cannot function at all with that stuff, but did get pain relief...in between all the wretching. So now I've stopped taking that of course, but cannot get my Nurse practitioner to get a script for the old stuff rather than nothing but continuous pain...I've left her 3 messages, and really don't feel up to going in again. The whole process of getting in to see her is fairly lengthy 30 - 45 min. wait, but that is an improvement over my GP, whose wait time is 1 hour on average. If I could lie down and have a rest while I'm waiting it wouldn't be so bad!!! I'm also quitting smoking and have been taking Champix, which is yet another additive to the mix, but it's working so I've gotta suck that up. We ran out of food last week, but since the fridge is broken, and I've been to ill to buy a new one and go grocery shopping (I hate grocery shopping, even when I'm stocked up with pain meds, I make it through the store but start to flounder in the line up, and by the time I'm loading it all into the car I'm totally drained, and can just get home and fall into bed...the groceries have to stay in the trunk for awhile until either Matt gets home, or I can revive enoghh to do it!) Matt's been eating alot of take out, and me...cereal. But I know that just like always we will muddle through, and this too shall pass, but I just wish life wasn't quite so hard. I know that I am blessed, and have more than enough to be greatful for and I thatnk God daily for that. I'm just feeling particularly sorry for myself tonight, and that's all there is to it! Thanks for listening.

Fibro Fun and other craziness

I've been Down and out for the past 5 days....severe IBS and Nausea....this is another wonderful aspect of my illness. My head has quieted...my thoughts have settled, and the noise has settled. The "racing thoughts" stuff is difficult to describe, but it's akin to your brain being a TV that is turned up really loud, and someone is rapidly channel surfing... go go go...even stranger is that u notice it more when it's stopped, than when it starts....it kind of sneaks up on you...like a ride slowly speeding up....I guess like a frog that will sit in the water and boil to death without jumping out...it just escalates and is kind of okay for while. It's not fibro though...it's an extra! I've never really kept track of the time stretch, but I'm going to try. You'll see by my "posts" when it's up and when it's down. I was quite a bit "up" when I started this blog...and came down to land around the 26th I think.