This post will be all over the place and it’s nothing but sheer rambling tonight with not much “education” involved today.

So, last night I managed to get SOME sleep but I woke up totally exhausted which tells me from experience I did not sleep as well as I thought I had.  No huge surprise there.  I have some pretty bad sleep apnea and at night my blood pressure (hypotension) goes so low (my sleep study showed this) that my brain continually “wakes me up” to say HEY you’re barely breathing WAKE UP.

How low does my blood pressure go?  During the sleep study my lowest was 60/43…geez louise!  I have had 24 hour blood pressure monitoring (this is where they hook you up to a lovely little machine you carry around for 24 hrs and it constantly takes your blood pressure) needless to say that dumb thing going off every 15 minutes drove me totally insane and my “overall average was 78/62….amazing Istay upright.  Well, sometimes I don’t…..once I was in the kitchen with a sharp knife and my pressure went BOOM and so did I …right out like a light on the floor with the back of my head landing in the dog water and I had bruises from the fall on my hip and knee…..sheesh. I remember starting to black out and knew I had a knife in my hand and the last thing I remembered was pulling the arm with the knife in it far away from me but couldn’t release it and that was all she wrote.

So between FMS/CFS and no blood pressure its no wonder I am so bloody tired most of the time and today was one of those days.

My claim to fame today was at the very last minute getting ready for a doctors appointment.  Today was not for me it was for my friend Lynnie who also has FM and she has RA (rheumatoid arthritis) and she needed some moral support so the two of us were draggin’ together and a pretty pathetic sight we were.

We were out a total of 2 hours and by that time both of us were totally obliterated and wiped out…sigh….

It’s monsoon season here in Tucson and holy crap the barometric pressure is killing me not to mention the extreme heat.  My hips hurt so bad I can barely walk (whats new magoo) and I move like an 90 year old.  Pretty pathetic for being 44.

I have this “new thing” going on now in my right shoulder.  I get this HORRIFIC cramping pain behind the right shoulder blade that comes on that literally is so painful it takes my breath away and my arm with go numb.  Have you ever and tendonitis or most commonly called “tennis elbow” well if you have it is similar to that type of pain only magnified.

Nothing got done today.  No dishes, no laundry NOTHING, zip, nada, zilch.

I guess I can find that silver lining and say at least I’m alive……..right?

http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it completely resembles my thoughts as well.

There are the things I would like you to understand before you judge me…

Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than 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.

Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely 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. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.

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. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. 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 part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. 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.

If you want to suggest a cure, 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 every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you – people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site.  Thank You.

What is Fibro Fog you ask? Well, I can give you the clinical mumbo-jumbo or straight talk.  I think I will give you straight talk and then follow up with some clinical explanations along the way.

Everyone needs restful sleep to function properly.  Ever stay up late then get a few hours of sleep and the next day you’re dragging?  Forget where you left your keys, repeated trips to go get something and by the time you get there you’re left standing in one spot thinking “now what was I doing?

Okay, normal. Everyone has that once in awhile right?  Now take this scenario and multiply it.  Not with just a few hours lost in sleep but many days, many nights, day in and day out with no sleep or very little.  This results in sleep deprivation and the brain literally “fogs up”.

You start a sentence and stop dead in the middle not even remembering what you were talking about, your brain is thinking but your mouth is not saying your thoughts clearly and comes out a jumbled mess.  Can’t find the car keys?  Never mind the keys where the hell is the car?  Oh, and did you happen to see that wall jump right out at you and slam you in the shoulder?  RUDE JUST RUDE! In other words your cognitive skills are highly impaired.  Forget about spacial awareness nothing is where its supposed to be!  Your mind is fuzzy and you trip over your own feet and like I said things jump out at you.  Your short term memory is shot but you sure as heck can remember what happened 10 years ago but not from one minute to the next.

Many of us fear we have Alzheimer’s or well on our way to it (thank goodness that isn’t the case).  Confusion and frustration sets in.  Sometimes its so bad I’ll break down and cry or get very angry.  Let me give you one instance that literally scared the bejeebers out of me.

I’ve lived in Tucson, Arizona for 20 years now.  I  know the place like the back of my own hand….as long as….I’m not in Fibro Fog Mode.  One day I pulled out of my driveway and my girlfriend was in the passenger seat.  I put the car in reverse pulled out of the driveway put the car in drive and just sat there with a blank look on my face.  My friend didn’t say anything at first and a minute passes and she says “Uhhhhh are we going to go”?  I looked over at her and told her I couldn’t remember how to get to the freeway from my house to get where we were going.   Now my friend did not know Tucson like I did so she had no clue.  It took me almost 5 minutes of hard concentration to remember how to get where I needed to be.  Fibro Fog.

Fibro Fog will take a very articulate person and turn them into a verbal blunder.  When your cognitive skills are impaired it will literally drive you mad!  Fibro Fog is not a pshycological problem its actually a physical symptom of FMS.  Often we will “joke” about it but in all reality it is down right embarrassing.

Often when I am talking with someone generally my friends or family because when I am in bad Fibro Fog I just don’t talk to anyone else, I’ll be in mid sentence and say “where was I going with that?”  and they know me so well now that they will repeat what I was saying to jog my memory.  Sometimes it works and sometimes it doesn’t.  Frustrating.

We are not blithering idiots we truly cannot remember things.  These are the days I know I should not be out anywhere!

Here’s a little diddy to read:

You know you have fibrofog when……

You boil the kettle dry three times to get one cup of tea.

You read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.

You call the school twice, to let them know your child is at home sick.

You can’t disconnect the dishwasher from the kitchen tap, because you didn’t turn the water off first to release the pressure.

I sure hope I sleep tonight because another night without it I’ll be a total wreck tomorrow!

Why embarrassing you ask?  Because Fibromyalgia and its underlying partners in crime are “invisible” for the most part and when people dont see you “sick” on the outside they don’t think you are sick at all.  One word comes to the mind of those who “cannot see” what is there “hypochondriac”.

Well, I can assure you I am not one.  I am not lazy or do I care or want Fibromyalgia and would just prefer it to dissappear.  So, on that note are you ready?

Shadows Pain Of Horrors: ( A Breakdown of each will come later)

• Fibromyalgia (FMS)
• Neuralgia
• Bursitis (Both hips and shoulders)
• Myofascial Syndrome
• Chronic Fatigue Syndrome (CFS)
• Irritable Bowel Syndrome
• TMJ
• Chronic Depression
• Restless Leg Syndrome
• Cluster Headaches/Migraines
• Pain and Stiffness In Joints
• Hypotension
• Sleep Apnea
• Severe muscle spasms in legs and feet

And the list truly could go on but that is the largest part of  my “Pain Of Horrors”

I find that dwelling on this list shall make me lose my ever loving  mind sometimes.  When I look at this “list” I think to myself ARE YOU KIDDING ME? I amaze myself sometimes being able to deal with it all….oh, don’t get me wrong it isn’t everyday I have them all at the same time (but I have).

Fibromyalgia has a way of deciding what IT wants to hand you on any given day.  It might give you a couple of good hours, a day or two and if you’re lucky, a few months.  In the last ummm two years I’ve had “three months off” from pain….it was a FABULOUS three months but then………it……….came……….back.  When you hear me say I am in a “full fibro flare” you know I am in excruciating pain.

That’s it for now, it’s midnight and even though I am not ready to sleep I will watch TV until the wee hours of the morning and hope for sleep.

Love and Light