Fibro Awareness Day (May 12th) Entry #1

~If you have fibro, I suggest searching YouTube for Fibromyalgia, ME, CFS, FMS... there are some really amazing videos out there.~

I'm pooped - Emotionally, physically, mentally, spiritually. (breaktime-back!) I'm trying to stay positive, but the pain is worse than ever. Yesterday my teeth felt like they were burrowing needles into my gums.. the pain was so intense and so unrelenting, I hate this disease with a passion. Today I can't sit up for more than 5 minutes without my back feeling like it's been beaten for a few hours. My eyes are blurring all the time, sometimes I can't see the computer screen without leaning forward and squinting hard. Sometimes I hallucinate so much I just close my eyes and lay in bed, watching the images painted on the insides of my eyelids. The anxiety is the worst it's been in years. I'm so scared, so paranoid, so terrified of the future. Feels like I'm always being hunted, stalked, watched, judged, targeted by some unknown that I know is irrational. I am paranoid about everyone, even my family. I know it's stupid, but my brain's nooks and crannies don't seem to. I meditate, but my fatigue gets the best of me and I just pass out for a few minutes. I'm so sleepy. I need good sleep. The first thought in the morning is about the pain that woke me up, screaming to get help - but no one can help. I want to get a massage again, but my pain is too bad. The slightest touch lingers on my skin with a bruising burning pain. I want human touch, but it hurts way too much. Constantly thinking people are out to get me.. worse since I've started to walk outside due to the good weather.. people seem to need to call me fat.. like they can't resist it. OCD? Who knows. The last thought before bed? Please God, let me sleep. Let me get more than an hour, let me be able to get to sleep without self hypnosis and a handful of pills. I don't want to count backwards from 1000 and then back again a good ten or fifteen times before I either drift off into sleep or give up and watch TV while trying to calm my anger down. Insomnia makes me angry. People are always judging.. she's not sick, she's a fat lazy leech on society. She's lying, exaggerating. Why won't she stop complaining? It can't be that bad or she'd off herself.

The shrinks who did my psych eval said I'm not "depressed". Does thinking constantly about how terrified you are about life have a name? Does it have a name when thinking of death makes you smile? One day it'll all be over. One day you'll be free. One day you won't have to hurt, be sick, be judged, be a burden, be a leech. Even if there is no heaven, even if I've hallucinated all my dreams of heaven being real, I'd be free of constant pain.. constant torture. There is no way to make the torturer stop... I can't tell him the truth, there is no ransom, there is no end of the war.. there's only pain till death.

But they'll find a cure... they say. Maybe, and I have so many hours of prayer and hope that one day they'll cure us. They'll cure us instead of laugh and judge.. they'll stop Death from being a comfort, and turn life into a comfort.

I'm being broken down block by block, my personality is fading, my mind is slowly obsessing over how to stop the pain, and I feel more and more like Alice down the rabbit hole - only I'll never reach the bottom. I fall and fall, reality becoming a fable... losing my sight, my hearing sharpens to pain me, every touch painful.. I forget what pleasure feels like.. Hold on, hold on.. don't let go of yourself. I'll never let go. Are these pills making me worse or better?

My life has become simple. Struggle to sleep, deal with pain all day, try not to binge(food), pills pills pills, panic, sadness. Luckily there's also: Family, friends, my Gordon, art, music, short walks when I can, occasional shopping, and Guild Wars.

Will I continue to progressively get worse, as I have over this decade? That thought I try to banish when it arises. I hate being serious. Pain makes you more serious. I wish I could have a holiday.

Chins up, my FMS/CFS/ME friends. One way or another, it'll get better.

Heart Rate and Fatigue: The Emlucy way to Rejuvenation!

With Fibro, Chronic fatigue, or simply being out of shape, the fatigue can be worse than anything else you've got. Not for me, I'd take the fatigue over the pain, but that's not a choice. What is a choice is helping the fatigue go away.

(The picture right is one I found on a cute site.. probably cute overload.. lol. It's friggin adorable.. so much it makes me grit my teeth!! love it)

What I've been doing lately is Target Heart Rate exercise, and it has been helping!! What's more, it can help pretty much anyone.. I said pretty much, but if you have a heart condition or some kind of jazz that'll be worse if you exercise.. don't. I do this at my own risk... and it has been causing more hurt, but at a good reward. I have had a little more energy. It's small, but for me - I'll take anything I can get.

Basically, I read through all my fibro books, cfs books, and related books - I read article after article on the Internet, I talked to my health care professionals, and then lastly I talked to people with fibro - and compiled this exercise regime!! Recently a few fibro and cfs friends have asked that I share my regime. Really it's not mine, it's just traditional health stuff we've heard over and over again.. but usually that stuff if the golden stuff, if you get my meaning.

Emlucy's Target Heart Rate Rejuvenator! ;)

Firstly, you're going to need a heart rate monitor - or you can do it manually. Find your Resting Heart Rate (RHR). Here's how:

Get nice and leisurely - relax, lay down, don't sit up!! Just get as relaxed as possible for 20 minutes. Then I want you to take your pulse. (See how many times your heart beats in 60 seconds OR use a heart rate monitor. I suggest a heart rate monitor, as if you have FMS or CFS you may lose count or have a crap time at multiplying if you're taking the quarters route).

My RHR: 65

Okay, now I need you to calculate your Maximum Heart Rate MHR. Women, subtract your age from 226, Men - subtract your age from 220. Personally, I just round the number.

My MHR: 226 - 26 = 200

So, the heart rate range is 65-200 - - then I rounded my number to 70 - just to make the next step cleaner and easier for Fibro Foggers and ADD'rs.

Next plot out on a piece of paper a little graph that looks like this:

70-80-90-100-110-120-130-140-150-160-170-180-190-200

Then, find rough half, quarter, and eighth points. Here are 14 numbers, so they divide 7 and 7 so between 130 and 140 is the half point (135) and then the quarter points would be the middle number of each of the seven. Highlight the numbers.

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70-80-90-100-110-120-130-135-40-150-160-170-180-190-200
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Okay, now you have your graph!! I put this on a magnetic board, to keep track of progress AND to remind me to exercise. So what do you do with the graph? Depends how sick you are:

If you're really sick, or really out of shape, your first week of exercise will focus on the first quarter: in my graph that would be 70-100. You want to do an exercise that keeps your heart rate in that zone for 15 minutes three times a week. Can't do it for 15? Do it as much as you can and then increase as you start getting healthier.

If you're moderately sick or moderately out of shape, start in the second between the first eighth and the second eighth. In my graph, that would be 80-120. Get yourself in that range for 15 minutes three times a week to begin.

From these two, you get the hang of it. Just increase accordingly.

What kind of exercise should you start off with? Work with what you have. I have a recumbent exercise bike, so that's what I use. You could use a treadmill, DDR, do Tai Chi, Yoga, Pilates, walking, jumping.. anything. You don't need fancy equipment. Oh, and watching scary movies doesn't count.. as that will build up adrenaline which won't be used if you don't work out. Get moving. Dancing to music is great. Just keep your heart rate in your beginner target range.

Increasing the workout to strengthen your heart, increase your energy, and lengthen your stamina is the next step:

After about three weeks, or less depending on your health, do it every second day, then every day for 15 minutes. At the same time, increase your target range by one eighth when you're ready. Never get up to your maximum heart rate, as you're asking for a flare up. Don't be silly!!!

You'll want to keep it within 5/8 and 3/4. After you can easily get in that range, you'll need to just increase the length of exercise, not the heart rate. You may never get there, that's okay. Take it to where you CAN. If you can only take it from 50%-60%, that's super! If it's only 30%-40%, that's still good!! Don't feel bad. Every inch on that graph counts!

I've noticed great results from this. Sure it's only a little bit to normal peoples' standards, but to someone with CFS it's like finding buried treasure! Every bit counts to better heart health.

When it's firmly part of your schedule.. you can move onto strength training.. that'll be next. I hope this is helpful!!