Just call me Jiji

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

Archive for the tag “fms”

WTF – What The Fibro is Wrong with Me?

 In my previous post I recounted my past six months of Fibro flare-up hell.

It feels all wrong! Not that there is ever anything right about Fibro; but this has been wronger then usual.

Is my fibro changing? Getting Worse?

Actually that is a really dumb question. Of course it is changing. As we age we change, stands to reason that our disabilities change too. Some things get easier to tolerate, while other things get worse.

But what if I am not getting worse? What if this is something completely different all together? It is all too easy to just blame everything on fibro all the time. But the possibility that I could have something in addition to FMS, is feasible, isn’t it? What if I was completely misdiagnosed all together?

This year of pain and exhaustion has felt so intensely bad that this can’t just be my fibro; it HAS to be something more than that.  …Doesn’t it?

I know, I know, that’s what my doctor is for. But there have been issues with the whole seeking medical attention thing this past year. My last visit with my primary care doctor in 2010 was for my routine 3 month fibro maintenance follow-up in October. It was before this flare-up really reared its ugly head, so I reported that I was feeling pretty good at the time. Then winter came in and decimated me with freezing cold weather and blizzards. My regularly scheduled winter flare-up tore me down, big time.

My next 3 month appointment which was scheduled for the end of January, didn’t work out, because I had to reschedule it due to the fact that Ron had commandeered my van for work when his car died and I no longer had transportation. Well, that and it was so bitterly cold that I just couldn’t get out of bed, let alone my house.

Unfortunately, I had to cancel the March appointment too. My sister was in the hospital and sadly, at 23 weeks pregnant, lost her baby. It was a very difficult month both in the weeks prior when the complications in her pregnancy arose, and after – as this was a terrible loss.

We all mourn the loss of the sweet little girl who was taken before we could know her but not before we loved her.

It was the beginning of April that I FINALLY met with my doctor. But it wasn’t a regular maintenance visit; it was a sick visit – for my nasal/bronchial issues. Dr. T is pretty much a stickler about only getting into what the appointment was scheduled for so I was shooed out of the examining room before I had a chance to go into any details about what was going on. But not before he suggested I see a Physiatrist first and then go back and see him. I think he was reprimanding/punishing me for not keeping my appointments…

I had no idea what a physiatrist was, so I looked it up here. And after I checked out the doctor’s website, I felt hopeful that this was going to be my answer. After months of no energy or strength, and constant fatigue and pain I was more than ready for answers. When I spoke with the receptionist to make my appointment, I had to admit that it had been more than 6 years since I had any MRI’s or other testing done. Because up till now I was maintaining my Fibro with meds; and flare-ups, although still painful, came and then WENT.

She told me not to worry; the doctor would order all new tests. When I got off the phone I felt a sense of relief. I just wanted to get answers to what was going on with me. And, here was a doctor that “instead of treating only specific symptoms and illnesses, a D.O. will regard your body as an integrated whole”, according to his website.

I had been going through so much difficulty and pain, all I wanted was to start anew. The seasons were changing and I was tired of hibernating. I had spent so long trapped in my home by the cold weather; my illness; and with still no transportation; and although I still felt like utter crap, I had to force myself to join the land of the living again, if anything, for sanity’s sake. I had been a shut in for so long that even my friendships were suffering. I tend to withdraw from people; friends and family alike; when things get this raw (read painful and depressing). And believe me this was raw!

In my effort to reconnect with my friends (and family) I felt I owed it to them to clarify why I needed to withdraw so much, why I bailed on commitments I had made, why I could not be reached by phone or even return messages. I felt I had to explain that I don’t mean to be a lousy friend, who forgets things, breaks promises, and just disappears.

In the process, of explaining what I was going through, I surprisingly had three separate people who didn’t even know each other suggest that it sounded like I had MS.

MS? Really? multiple sclerosis

I had heard of MS; but in truth I didn’t know anything about it, at all. It would never have occurred to me. When the first person said something to me I did what I always do; I disregarded the possibility that it could be anything but Fibro. After all, I had my diagnosis, and it took forever to get that in the first place, I didn’t want to start questioning it, no way.

But then a second friend suggested it as well. She knew a lot about it and started describing me, to me. All I could do was keep sit there nodding and saying, “Yeah, that’s me!”, “that’s exactly what’s happening to me”, “you are describing me”; her response was, “no, I am describing MS”.

Thoughts that crept around in my head: Oh crap!! Do I have MS? Wait! What the hell is MS?; What are the symptoms?; How do I know if this is what I have?; Do I really wanna know?

So I peeked, just a little, I looked it up on the internet. Just enough to get general info. I am all for getting self-informed and getting educated about something like ADHD, for instance, when your child has been diagnosed with it. But with this, I just didn’t want to read so much in to it, that I’d start self-diagnosing before I even see the doctor. What I read up on was the basics; the symptoms and how one get’s diagnosed.  I also read that it isn’t unheard of for someone suffering from MS to be misdiagnosed with Fibro.

As my appointment with the physiatrist drew nearer I got more and more emotional about how bad this whole year has been so far because of some illness that I have. I just wanted answers and I felt that in order to do that I need to start from scratch. I want to wipe the slate clean and start fresh as if I had never gotten my diagnosis for FMS all those years ago. Like I mentioned earlier, it is all too easy to pigeon-hole everything into Fibro without considering there might be something else going on.

A few hours before my appointment, I sat down and I just started writing and I kept writing until I had 3 pages full of what I needed to remember to discuss with the doctor. I listed symptoms, body parts affected, descriptions of the level of pain I was feeling, the emotional toll it was taking on me, etc.

It was unfortunate that after all the time I took to prepare, I ended up forgetting it all at home. I was beside myself. The poor doctor did not know what to do with me. I just started crying and crying. I could not get my thoughts together, I was forgetting everything I wanted to talk about AND what was worse was this doctor just was not living up to my expectations. I wanted him to have all the answers, to fix me, to order the tests that were going to get me my answers.

The doctor didn’t actually do anything wrong, he was just not right for me. He focused on the pain in my arms and scheduled an EKG/nerve test. Through my tears I managed to tell him I felt that that wasn’t enough. What about the pains in the rest of my body? His response was that he wanted to focus on one thing at a time and he advised me to go back to my primary care physician for a referral to a rheumatologist for my fibro.

I left there in tears. I cried all the way home and by the time I walked back into my house I was sobbing uncontrollably; poor Ron and Leon had no idea what was going on and were very concerned.

I want a doctor that was going to treat the whole of me; not just the parts of me. This is not what I got in this doctor. I realize that I had put way too much stock in this one visit, and my hopes and expectations were waaaay too high. I was overly emotional, and at a loss. Now what?

The fact is I don’t see a rheumatologist although I know I should, but after never being able to get an appointment with the one that I initially had, the one who diagnosed the fibro, I began to rely on the neurologist that she had sent me to. I was maintaining fairly well with the meds that my neuro had prescribed.  Eventually I lost my neuro too, due to the fact that she became ill and left the practice. In the end I never did find a new rheumatologist or neurologist; my primary care doctor was prescribing the medications I needed, so I felt that there was no need to find another one; till now that is.

Last week I met with my primary care physician, to discuss a plan. This time I did not forget my notes. Even so, I was still a blubbering fool, with tears falling uncontrollably from my eyes, as I explained how bad things had gotten and how lost I felt. I explained that I was concerned that what is going on with me was something worse than Fibro and I shared the suspicions of MS that others and now myself had. In the end my doctor told me that he feels that I have extreme Fibromyalgia and that I am suffering from severe depression; he also feels that I am beyond his help at this point and he referred me to a rheumatologist and a psychiatrist. When I questioned the MS again, he told me that he felt it was unlikely that I had MS at all. I would love to just accept that but I am too worried about something being over looked because it is too easy to stick with the original diagnosis. He gave me the name of a neurologist to call, if I felt the need to pursue it.

I do and I did. Feel the need to pursue it I mean. I have an appointment with both a rheumatologist and a neurologist next week. I have not scheduled an appointment with a psychiatrist yet as I have yet to find one that takes my insurance.

In the several days it has taken me to write this post (I can only do a little at a time due to the pain in my arms and hands) the tears have seemed to come to a halt. Writing and getting all these thoughts and feelings out of my head seems to help a lot. But I will bring the tissues to my next appointment; just in case. 😉

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The truth about housework, sex, and fibromyalgia

I like sex. Most people like sex. Some people like it more than others and some don’t like it at all.

I cannot speak for everyone, but I am pretty sure that the majority of people tend to experience a more frequent and active sex life in their younger years.

As life goes on, it seems as if, frequency, activity levels, and even desire seem to fade.  Some even feel that, it is marriage that does it. I personally don’t think it is marriage that does it, it’s just plain ol’ life that get’s in the way. Too much work, too much stress, not enough time, not enough privacy (kids around), too tired, and for some folks like me, something like illness or disability can get in the way too.

Fibro flares have a number of different triggers. Physical activity and exerting one’s self is one of those triggers. And let’s face it if you are not physically exerting yourself in the bedroom then maybe you aren’t doing it right.

So suffice it to say that my fibromyalgia has the potential to ruin my love life.  In fact for a time it really did. With flare-ups and the exhaustion and pain that come with it, something always has to give. That is just a fact of fibromyalgia.

With fibro too many things get put to the back burner. Projects and activities I want to plan and do rarely get further than being just an idea in my addled brain. The energy to do the everyday things in life, like housecleaning or even personal maintenance has to be sparingly doled out. Too many things get pushed to the side, with the intention of getting to it eventually.

The time, attention, and affection we give to the people we love, should not be one of those things that get pushed aside, or put on the back burner. But because the people we love, know us so well, and are more understanding of our limitations they often bear the brunt of it.

At the beginning of this year Ron and I had a moment to sit back and talk about how much we missed each other. Which would not be so strange if it were not for the fact that we were the first and last person that each of us saw and spoke to each day.  What we missed was the physical attention we gave to one another.

Yes, we were talking about sex, but not just about sex. We also missed the little touches in between. The touch on the shoulder, the arm around the waist, the holding hands, the kisses and the occasional butt squeeze, and yes, the sex that many of those things could eventually lead too. Where did all those things go?

We had plenty of excuses; too stressed, no time, too tired, too busy, no energy, too many body aches, too much to do right now, too much to do tomorrow.

Granted these excuses fit anyone and everyone, fibro or no fibro. But unless you have a trapeze in your bedroom, how many people have to worry that a night of sexual activity might put them out of commission for the following day or two?

And that is without the trapeze in our bed room 😉

Our talk led to the promise we made to each other. Which was to make more of an effort to be more physically attentive with one another on a daily basis. To snuggle on the couch instead of sit at opposite ends of it, to kiss more often, and hold hands when our hands are free. To rest a hand on each other or give a little squeeze when then opportunity presented itself. And yes, to make time for sex, even if it has to be scheduled in.

So we’ve kept our promise. We have made more time for just the two of us. We have a monthly date night scheduled. And we  are a lot more physically attentive to one another, both in and out of the bedroom.

I’ve got to say, life is a lot sweeter and happier in the arms of the person I live and breathe for.

The only downside is that, the energy that goes into the physical activities in the bedroom tends to trigger a fibro flare in me.

And with fibro flares, something always has to give. Fibromyalgia could be riuining my sex/love life. but we REFUSE to let it!

So please excuse my filthy house; but if you had to make a choice between making love or housework, what would you choose? 🙂

…and so what, if I can’t function at 100% the next day or two, at least I have a smile on face,as I am trying to figure out how I am going to catch up with life that is still proceeding on with out me.

TMI????

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!

Please just GO AWAY!

Dear Headache,

Please just GO AWAY!

You just can’t seem to take a hint, I throw things at you like medication and OTC pills; I try ignoring you by sleeping, with the hope that you would just go away; I’ve fed you, thinking that maybe it was just hunger keeping you around; and given you gallons of water in case it was just dehydration. 

 And still you are there.

Please just GO AWAY!

Seriously we’ve just got to stop meeting like this.

You’ve become way too predictable. You are there when I go to bed. You are there when I wake up

Please just GO AWAY!

Don’t think of this as a break up, after all it’s not like I ever liked you in the first place!

Please just GO AWAY!

I know you think that you’ve got all the power and that I could never get over you!

But I am done! Really, really done!

NOW PLEASE JUST GO AWAY!  (or else!)

Cleaning my plate – part 2 / Fibro is a pain in the…

….continued from Cleaning my plate – part 1

At my annual physical with my primary care physician I brought up my concerns about my health and the impact it was having in my life. Many things were discussed and I was referred to various other doctors to discuss certain issues that come with age and with being a woman.

We also addressed my Fibromyalgia, I wanted to re-evaluate my treatment.

   

After this past winter and the nearly 3-month long fibro flare-up something had to change.  I have managed the pain through the same old meds for quite some time. I think it is time to change them up, especially given all the new medications out there for Fibro now. My doctor agreed and has me on Lyrica now.

It’s been about a week, so I am unsure as of yet if it is making a huge difference. For now the side effects of constipation, headache and fatigue are making it difficult for me to see if the results are any good. I am also a bit worried about the side effect of weight gain. Although I did not gain any weight at this week’s Jenny Craig weigh in I also did not lose any. Over the course of this past week, while on the Lyrica I have felt more hungry, and I will sheepishly admit that I did give in to it a bit too much. I am just going to have to make my will power even stronger!

  

Mean while I am still taking the Cymbalta which is good, because it keeps Evil Jill at bay. When people ask me what I am taking it for my first thought is Anger Management. Yes, as far as I am concerned there is a pill for that. Face it, it keeps me chill and I lose my mind a lot less, and don’t yell at Leon as much when he drives me bonkers.

I just dislike having to take 6 pills a day between the Lyrica and the Cymbalta. But if I really think about it I was probably taking more pills than that during my flare ups. Hopefully I can cut down on the muscle-relaxants, anti inflamatories, and pain killers now.

Being that the weather was such a huge contributor to the most recent flare-up loop, I am hopeful that the change in weather will turn things around too. so far so good. It’s 82 degrees and nary a complaint of pain. (Although you might check in with me later, after my date with my Wii Fit 🙂 )

Spring is in the air and summer is close behind! My sinuses may not like it, but my physical strength and my spirit are doing so much better.

Watch out! I am back, baby!! 8)

While at the doctor I also inquired about Adult ADD and a possible diagnosis. As it is often the case with parents of children with ADHD, usually one or both parents also have ADD/ADHD. The more research I do the more convinced I am that I have always had it. My mother agrees with this but I want to know for sure so I can get treatment for it.

Some might ask, “What’s the big deal?, If you have it, you’ve always had it and you adjusted”; Well, yeah that is true however adjustments don’t happen overnight, and with each new situation that enters my life there is a new adjustment period. My life has always been chaotic and cluttered, both literally and figuratively, and I’ve always, eventually muddled through but not without everything being turned upside down first. I always say I am the most organized, disorganized person I know. However throw in even the smallest monkey wrench and everything goes Kaplooey until I can figure out a way to put it all back together again.

 If I didn’t have just me to be responsible for that would continue to be just fine. But the fact of the matter is I really need to handle myself better. I need to be a good example to my child so so he can learn to manage his ADHD life, rather than contribute to his chaos.

The doctor wants me to deal with one thing at a time, especially when medication is involved. And right now that thing is Fibromyalgia.

In the meantime I am trying to manage the household better and make our lives a bit more manageable and organized….

….more coming in Cleaning my plate – part 3

A Mother’s Guilt is Never Done

Ooooh! Owwww! Ohhh!

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

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

Now, I am soaked from head to toe!

I am chilled to the bone!

I am pooped! 

And I am HURTING!

Bad!!

Ah, the things we do for our children…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Leon is all smiles again! And so am I.

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

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

A Mother’s Guilt is Never Done

The Me I Wanna Be

I’ve been down.

I don’t know why I am so down exactly, but I have a clue as to how it happened.

The me I used to be...

I went off my meds (Cymbalta), and for too long. I didn’t do it on purpose. It just happened really.

Just before Christmas right when the pressure was on, I got sick. The stomach virus hit me hard, I even ended up in the hospital for dehydration. In those days of throwing up and sleeping all day, the last thing on mind was taking pills, just the thought would make me nauseous. 

Then I got better but I was always so dang busy, that I just kept forgetting to take my morning meds and I kept skipping doses, which is NOT GOOD. I knew I had to buckle down and just get back on them again.

Sounds easy enough right, just wake up and pop some pills. No, not that easy, my routine was all screwed up, and my flare-ups were BAD! I’d get up in such a fibro fog that by the time I would remember to take them it would be after noon. At that point it would be too late so I would swear to take it the next day. The next day would come and I would forget again and again and again. Then I would remember and take it for a day or two and forget all over again.

The horrible thing about missing too many doses that you end up going off of it all together is that when you do start getting back on you have to start from scratch and get your body accustomed to the side effects all over again. And really, really lousy side effects at that! Nausea, dizziness, fatigue, headaches, more nausea and fatigue, and so on, and so on….

It’s one of those vicious fibro cycles I get caught up in. Something throws me off my meds like an illness, I end up feeling like crap and flare-up, I get lost in the pain, then I get desperate to get back to my old self so I try to get back on the meds, fibro fog and my short term and long term memory loss keeps me from remembering to take the meds regularly so I keep missing doses, I end up feeling even worse (not at first because it is still in my system but eventually it gets really bad), I end up detoxing from the meds because rather than screwing myself up by skipping too many days I decide to wait until I can devote myself to doing it right and getting a routine down again,  I decide to wait for a long weekend when I know I don’t have as many other responsibilities and I have at least three days to just to deal with the side effects that my body now needs to get used to all over again with minimum disruption to the remainder of the week, things keep getting in the way and I can’t find the time to do it right, so next weekend ends up being weeks and then months before I realize I am so bad off that if I don’t just do it life will never get back to a manageable level!

And that’s just where I am at now. My life is no longer at a managable level. That’s where these blues are coming from. Right now I feel like I am so out of control because the pain has taken over my days and my nights. And while I am still taking my pain meds as needed, and it can dull the pain, my fatigue, and fibro fog, and everything else is still there. And it’s the Cymbalta that helps me keep a level head about it all and keeps me in control of my emotions (and reactions to them) revolving around the guilt, pain and discomfort of my disability.

The blues suck but if I don’t try and take charge they can get so much worse. I know cause I’ve been there.

I just started up again and have been 4 days strong, despite it being a bad time to get back on the Cymbalta, being that it is winter break and as a result, not only do i have Leon home all day with me but I also have Kiera, Nico, and Michael with me as well. The repeated waves of (time released) nausea, dizziness, and fatigue usually take about 1 to 2 weeks to get used to, but if I don’t do it now, when will I do it??

I can see my mood changing for the better, I am more calm and there has been less crying. I just wish it didn’t make me feel so crummy. Like right now I just can not stop yawning. All I want is a nap but with 4 kids in the house under my care that isn’t happening anytime soon….

Oh well, it’s the price I have to pay to be the me I want to be.

The Blues??

I think I got The Blues……..

The winter blues…

The life ain’t going accordin’ to plan blues…

The I’m so sick and tired of being sick and tired blues…

The I can’t sleep blues…

The I can’t even stand up straight blues…

The I hate everybody and wish y’all would just leave me alone blues…

The what do you want from me, I am in pain blues…

The you just don’t get it blues…

The I don’t even get it blues…

The this is the worst fibro winter flare up blues…

The stop callin me, I don’t want to talk to anyone blues…

The I am bored blues…

The I don’t like myself right now blues…

The I have lost my oompf and can’t find it blues…

The I have too much to do and don’t want to do it blues…

The I just don’t wanna and I just don’t care blues…

The why can’t everyone leave me alone blues…

The my birthday is a week a way and I just don’t care blues…

The when the hell am I gonna snap outta this blues…

The I am just not myself blues…

The life even all that bad and I still have the blues, blues…

…………………..yeah I think I got The Blues.

Let it Snow, Let it Snow, Let it Snow!

As anyone with Fibro will tell you, severe weather conditions is the enemy.

Rain, sleet, snow, high temperatures, humidity, ah heck, just a light breeze at the wrong time can totally throw me off. So when we were hit with the “blizzard” this past week, I was not feelin so hot.

I remember being a young girl just praying for a snow day at the first sight of a snowflake. Now… not so much. The cold that the snow brings; brings with it a pain in the ….well, …everywhere, and often, as has been the case this week, the pain lasts days longer than the snowstorm.

But despite all this I still say let it snow, let it snow, let it snow.

On Wednesday, Leon got to experience his very first snow day, followed on Thursday by a second snow day. Leon loved the idea that he got to stay home from school and just play. And not just play, but play outside, …in the SNOW, …..WITH DADDY!!!

The weather was bad enough on Wednesday that Ron did not go in to work and I even got a day off from babysitting. We had a very cozy morning just watching the snow come down. Leon waited very patiently to get out into the snow to build a fort with Daddy. After the first few times of asking me if I was going to help make a fort, he gave up asking. I hate to say no, I hate that I can’t jump right in and join in on the fun. But even if the pain isn’t that bad at the moment, I know that pushing it could affect me for days to come.

In the afternoon they layered up, and went out into snow, with me watching from the window. Somehow that hurt more than the physical pain of it all. I had to get out there and be a part of the fun and just live in the moment. So forgetting the pain I bundled up and grabbed my camera and made tracks.

They never did build a fort, instead my camera and I got caught in the middle of a snowball fight. With my camera as a shield against them taking any sort of aim at me, I was able to capture it all.

And although I am still feelin the pain of running around in the snow a few days ago, it was well worth it. Remembering Leon’s laughter at the time and the smile that the pictures bring to my face every time I look at them makes me feel so good.

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!           

` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \

\ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \`

  ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \ ` \

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!!

Soooo….

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!

 

 

 

 

 

 

 

 

 

 

 

Fibro sucks EVERYDAY…

… because it hurts, EVERYDAY!.

Some days are more tolerable than others, and some days are just outright excruciating.

 A GOOD DAY is just a dull and annoying pain that is always with you.

A BAD DAY is rather dying than moving, or talking, or thinking, or even breathing because all of it hurts.

What Are the Symptoms of Fibromyalgia?

Symptoms of fibromyalgia include:

…because it is invisible EVERYDAY, even though I am not.

On most days I look fine, but I just can not function well enough to match the image. I often feel as if I have to explain myself , and the explanation is most often Fibromyalgia. 

 Often there are the days that I just don’t bother, I don’t bother to dress, I don’t bother to do my hair or put make-up on, I don’t bother to make myself presentable, because I might look too healthy for the way I am feeling.

…because EVERYDAY, the productive part of my day just dwindles away.

Fibromyalgia symptoms intensify depending on the time of day — morning, late afternoon, and evening tend to be the worst times, while 11 a.m. to 3 p.m. tends to be the best time for most sufferers. For me this is very true, so what it boils down to is I basically have a small 4 hour window of active productability each day. No wonder I can never get things done. And I complain of life getting in the way of life.

…because even the people who are the closest to me EVERYDAY, will never fully understand what it really feels like or means to have Fibromyalgia.

They know I have it, but I always have it. For them it is the same old, same old… you are sick, you are tired, you are hurting, etc, etc.

But for me it is never the same, it is never the same old, same old… What makes one day or one moment different from the next? Only the degree of pain and how well I can handle it and what comes with it. Sometimes I even find myself surprised at how bad I am feeling, because I hadn’t felt this bad in a while or because I never thought it could get as bad as this to begin with. Some times I just get so frustrated with the fact that they just don’t understand the pain and the difficulties that come with Fibro. Yet at the same time I don’t really want them to because the only way to ever truly understand is to have it. And I wish that on no one.

…because my Fibro doesn’t just affect me, it effects everyone around me, EVERYDAY.

My wonderful husband and terrific son get the brunt of it.

Ron all too often has to pick up the pieces, when I can’t function in just ordinary daily living. Mornings are terrible for me because I wake up stiff and in pain. It usually takes me 2 to 3 hours to bring the pain down to a more manageable level and to shake off the fatigue from having a restless night or no sleep at all, until just before it is time to get up and get going. So he has to help with Leon each morning, (schoolbag packed, lunch made, meds given, and ADHD boy whose meds have not yet kicked in, dressed and entertained until the bus comes), so I can stumble out of my bed, trying to get my act together to immediately begin my day taking care of my soon to be 2-year-old niece at 7am. And all this from a man, who, even with my Fibro, is less of a morning person than I am. He then works all day and has to come home to pick up even more pieces.

By the time 4pm hits I am done. Working from home, taking care of an infant (Nico-8 months) and my extremely rambunctious niece (Kiera-23months) is more than exhausting. Believe it or not changing Kiera’s diapers can be very physically painful for me, what with all the flailing and kicking and chasing that goes on – :?. And keeping up with the house while keeping up with the kids is an excercise in futility. As soon as one child is fed, the next one needs to be fed; as soon as one diaper is changed another one has to be changed; as soon as one set of dishes are done, there are more in the sink; as soon as one toy is cleaned up, a new one magically appears scattered across the floor. Then 4pm rolls around and that’s when all the poop hits the fan at once. I often talk about this being a bad time for Leon, with his ADHD and all the commotion that comes to a head all at the same time, but it is just as bad for me as it is for him (sometimes worse depending on the day). Leon gets off the bus, like a tornado, backpack, lunchbox, books, papers, shoes, various pieces of clothing and a whole slew of questions all flying around at once, at the same time the babies get picked up one after another, and I am trying to hold down some semblance of an organized and structured enviroment for Leon to get on with his homework while dodging “can I PLEEEZ  have a playdate today” questions. It gets quite overwhelming. And depending on how bad I am flaring this is where poor Leon gets the brunt of it. The pain of having to say “No, not today baby, Mommy doesn’t feel good” or “Sorry Leon, mommy is hurting too much to play with you right now” or “go get your DS and sit in bed with me while mommy lies down for a bit”, hurts sooo much more than the actual physical pain of fibromyalgia! I hate letting him down all the time! I hate letting them both down. By the time Ron gets home, I still haven’t been able to completely clean up the house, do the dishes, or make dinner. It’s not for the lack of trying, I do try but I never seem to be able to complete the jobs. So guess who steps in and picks up the pieces? Ron of course. 

…because it makes me look and feel: like a burden, lazy, messy, unorganized, disconnected, ditzy, unreliable, inconsistent, forgetful, whiney, selfish, moody,   (..I could go on and  on) EVERYDAY

  I worry all too often that I am a burden to my family, specifically Ron, who has to make up for what I am lacking as a housewife and mom. And to Leon whose mom can’t just be like other moms.

I am always disgusted and embarrassed by how disorganized and messy my house is. It is all too common to see things piled up all over the place, from papers, to dishes, to piles of clothing or toys. I often lack the strength, the time,  or the energy to keep up with the house, let alone my own appearance.

I dress comfortably (sweats and t-shirt comfortable) and rarely style my hair or do my make-up. Especially when I am really hurting – fibro is invisible enough to look too good to be sick.

I often feel that people perceive me as being very lazy because I just can’t get myself started on a new task and because once I do start one, I never seem to be able to complete it; or because Ron steps in so much to pick up my slack. 

I worry that people see me as being ditzy or dumb, because my “fibro fog” prevents me from being able concentrate or even to finish a sentence properly. I have been known to lose a word mid-sentence, I know what I mean to say but it just wont come out. It also causes me to consistently forget things. (appointments, phone numbers, where the car is, dates, commitments I have made.

I must seem incredibly inconsistent and unreliable to anyone around me, between forgetting things so easily or having to bail out and cancel plans or appointments last-minute due to an unexpected flare-up or my forgetfulness even. 

While I often have the urge to explain why I am the way I am, I worry about talking about my pain and other symptoms for fear that someone might brand me a complainer or a hypochondriac, or say I am using my fibro as an excuse

I tend to get very moody because of the pain, I become very crotchety, and selfish even, because I am so consumed and lost in my pain that I forget to think about how others may be feeling and what they may be going through.

…because the pain changes, EVERYDAY.

The pain changes as quickly and as often as the variables do. 

Fatigue; tension; inactivity; changes in the weather (rain, snow, heat, humidity); extreme temperature; cold or drafty conditions; overexertion; hormonal fluctuations; sensitivity to odors, noise, bright lights, medications, and certain foods; stress; depression; or other emotional factors.

All these things will affect my fibro and to what degree I will feel it and be able to function.

…because Fibro is a vicious cycle, EVERYDAY.

These are the cycles that I tend to fall into:

Vicious Cycle of Non-restorative Sleep

Both FMS and CFS disrupt sleep quality.  Poor sleep, in turn, worsens physical and mental stamina.  Poor sleep also increases sensitivity to pain.  These, of course, further disrupt sleep.  

Vicious Cycle of Inactivity Leading to Progressive Loss of Physical Fitness (De-conditioning)

People with FMS and CFS feel too ill to exercise, and if they push they get worse.  However, not exercising at all is also a mistake.  With inactivity, fitness fades.  This increases vulnerability (i.e. it takes less and less exertion before you push over your limits).  This leads to less activity, which, in turn, leads to lower blood pressure and blood volume. Blood sugar becomes unstable.  Disruptive stress hormones increase, (e.g. adrenalin and cortisone).  People feel worse, so they can do even less.  And the cycle repeats.

Vicious Cycle of Mind/Body Tension

Feeling bad for so long makes people “tighten up”, both literally in their muscles and figuratively in their mind.  Muscle tension increases pain and stiffness.  Mental tension creates feelings of anxiety, and a sense of not being in control.  This causes more physical and mental tension, reinforcing the illness. This is one reason that people with Fibromyalgia are more likely to suffer from migraine or tension headaches. When headache pain is bad, this also tends to make Fibromyalgia worse.

Vicious Cycle of Losing Perspective, Losing Hope

People who are chronically ill tend to lose optimism and also their sense of perspective and proportion. Small set backs feel like catastrophes.  Dips feel like forever.  Anger suppresses immune function.  They may lose hope and stop trying.  This heavy burden adds to the illness.

 …because I have to push myself EVERYDAY.

Obviously when I am feeling bad I have to push through the pain just to get through the day.

But sometimes even harder than that, are the days that I am feeling good and I have to push myself to accomplish as much as I can while I’ve got it in me to do it. Time is of the essence for me because I have so little of it. I tend to be a such a perfectionist and an over-archiver, because I may only have one chance to get it right, I never know how long I have till I fall apart again. I set my standards for myself pretty high because I feel the need to make up for lost time, and for my short-comings. I’ve been told that I tend to go above and beyond for certain things, when it isn’t really necessary. But it is for me, I push myself when I can because I need to feel that sense of completion and accomplishment. And probably because I also need to feel the praise that comes with those things that I do go above and beyond for because fibro can bring me way, way down, I need to be proud of something.

SO THERE!!!

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