A snowman with CFS

Please be sensitive to the snowman’s smile and read The Open Letter To Those Without Fibro/CFS … and realize he might be happy but he’s not necessarily also healthy … as you can see!

Instructions

1. Dig out your just recently put away Chrissy tree lights.
2. Either superglue or tape them to yourself (preferably both since that would be more realistic) not forgetting to stick some under your chin, a few on your scalp and a couple over your eyes.
3. Find a new clothes peg and insert your right index finger until you are just on the verge of wincing and clip it onto one of the leads from the lights.
4. Next take two bum bags (or fanny packs which my Canadian husband is now realising he CANT say) fill them with small marbles and wrap one around your stomach and the other just below your breasts. Likewise attach those to the Chrissy light leads as well.
5. Find that old yoga mat, wrap it in a tarp and place on the kitchen table – simulating the depth and height of the “bed” and find that threadbare cotton blanket you now use as a drop sheet.
6. Turn your air-conditioner on to “subarctic” and if you don’t have air conditioning, just open up all the doors and windows so you feel like you are outside.
7. Wear “what you would normally wear to bed”. So since I normally don’t wear anything – find the most concealing, constrictive pair of crinkly, twist around you pajamas you have, remembering to drag all the leads up from your legs, out through your waist band, up over your chest and out the neck hole.
8. Now sit and act “normal” for as many hours as you need to feel ready for sleep.
9. Give up on trying to feel normal and get onto the “bed” far earlier than you would ever dream of sleeping (hah that was a funny) and get someone to tape the loose ends of the leads to a point which gives you enough room to turn over ONCE and only in one direction.
10. Remember they want you to feel comfortable, relaxed and secure so you have a typical night’s sleep.

My "Real" Experience

Basically the above but in a different setting.

Oxygen saturation at commencement 99%. Luckily it didn’t drop below that all night. I snore apparently on all sides, including stomach. Apnea is minimal. Dreampt all night – vividly!! Died three times – ie I pulled the finger probe off three times in my sleep and registered O2 saturation zero and set off the alarm! (haha). It had no effect on the snorer from hell on the other side of my ensuite.

Woke up 5 times wondering what time it was. Pulled finger probe off deliberately to get a technician in to ask what time it was, used that as a good chance to go to the bathroom and flushed x 3 to try to disturb snorer from hell. It was 2am.

Since I went to bed at 9pm the five restless hours seemed adequate to me. However willed self to stay.

Was awoken at 5.30am. Paraphernalia removed, breakfast tray arrived, another questionnaire to fill out, one sip of coffee, one mouthful of toast and advised to shower and dress. Returned to room to find breakfast tray had been removed. Got dressed, put face on since I was going straight down in the lift 4 floors to my office. Was at work at 7am. Totally knackered!

Personal Findings

Angela likes her own bed. Suffers from separation anxiety. Is a bit contriving (borderline nasty). Will never be a morning person.

Clinical Findings

Have to wait five more days!

… you do the “Tim Conway Shuffle” all the way to the bathroom in the middle of the night. — Cassie Selleck

… friends who ask, “why are you walking like an old lady?” are likely to get hit with your cane. — Cassie Selleck

… you find yourself standing in the middle of the bathroom with an unopened packet of coffee and have no clue what you came there for. — Cassie Selleck

… a sneeze paralyzes you with the electric shock it sends down your arms. — Cassie Selleck

… you realize that you are putting the salt away in the refrigerator. — Carole Colquehoun

… you can’t find your house keys – again – and realize you might have put them in a pocket as you came inside yesterday, but can’t remember what you were wearing yesterday. — Carole Colquehoun

… you are talking to someone on the phone, but can’t remember who called whom (or why). — Carole Colquehoun

… you use something out of a tube on your toothbrush and it isn’t toothpaste. — Carole Colquehoun

… you give up on your dog coming to you on command because you forgot her name. — Windy Foster

… you go to take the clean dishes out of the washer and find your best sweater and pants that were to be on the hand washed cycle in the dishwasher. — Bonnie

… you take your mother to the hospital and use the restroom, remarking to yourself how odd the women’s restroom is in the hospital. On your way out, two men come in. — Phyllis

… the only thing that doesn’t hurt is not attached to your body. — Nancy H

… you are at a Fibromyalgia conference and you sit in the back and you see a room full of people flexing their necks at various times throughout the presentation. — Nancy H

… you sit in front of the computer and intend to surf the web, but instead just stare at the welcome screen. — Nancy H

… when people look at you and say “You’re looking good.” and you want to strangle them but your concerned that your hands will hurt too much. — Nancy H

Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
The things I can,
And the wisdom to hide
The bodies of Doctors I shot
When they said,
“You’re perfectly healthy,
It’s All In Your Head."
– Author Unknown

1. A new lawnmower. (Run by human power)

2. A year’s free subcription to the “Health and Raquet” club. (Our local franchise for the exercise and keep it slim freaks)
3. A bungy jump from the bridge at the Victoria falls. (Hey man, that’s nothing new)
4. Intense reading matter from an acquaintance eager to get your “expert” opinion on the latest releases on the serious literatuuuure market.
5. A tray of seedlings needing to be transplanted NOW.
6. A juice extractor and a bag of juicy overripe fruit ready to be “juicified” asap.
7. A huge frightfully expense box of chocolates. (If your variation of Ceefids feels nauseous just thinking of the stuff)
8. A loud noisy CD made by a distant cousin of a “friend” very eager to get your opinion on his/her magnum opus.
9. A hyperactive puppy with a highly sensitive tummy. Not house trained yet.
10. A crackpot kitty that never sleeps.

Chronic Flora Speed – this was suggested when |Davey| and I were talking and I mentioned that I liked sitting in the garden because I thought I moved about as slow as the flowers!

Al suggested this one:

Clinically F#^%@cked, Sorry!

Mike Salamone emailed me with these ones for CFIDS:

Can’t Find Intelligent Doctors, Stupid!

Caged Feeble Inmate Does Suffer

Call Friends If Disease Subsides!

Can Family Insist Diagnosis Sucks?

Marty Slowman suggests:

Changing Focus Incredibly Due to Sickness

Clinging to Friendly Individuals And Dumping Shitheads?

Cursing F@*%#ing Incompetent DoctorS

This list was written by Jennifer Munn. Jenn signs all her email to the CFS-20s list with ‘CFIDS: Caring Friend in Dire Straits’!

10 – You find yourself taking 15 minutes to decide which T-shirt you’ll
wear with which pair of boxer shorts.

9 – You become fascinated by the swimming patterns of your pet goldfish.

8 – The big event of your week is when the shower drain gets stopped-up
and the plumbers have to come to fix it.

6 – You forget how to count down from 10.

5 – You hug your computer and scream at your pets.

4 – You are denied disability benefits.

3 – You begin to notice new and different versions of TV commercials and
you critique them.

2 – “Dressing up” means that you blow-dried and/or combed your hair.

And the number one way you know you’re a homebound YPWC…….

1 – You can’t find anything better to do on a friday night than make up
a Top 10 List!

Dear Santa,

I have been a really good girl this year as I had no other choice. Since I can’t drink and I have no energy to get dazzled up, let alone no budget for clothes for my new body, I couldn’t go out and party this year. So that should count for something.

Santa, I have also given up many things, therefore I am no longer self-indulgent. I have given up smoking, caffeine, processed sugar, cokes and Pepsi’s, hard alcohol (I do have a sip of wine Santa, I must confess, but it’s about once a month or so), dancing, working out, having a lot of sex, friends, social events, working, not raising my hands over my head, not leaning against a wall, and most of all cleaning my house and doing my dishes with any regularity. I also gave up gardening and having a beautiful yard just for you Santa.

Santa, I don’t have a big wish list although gifts are always appreciated. You won’t have to get any sparkling diamonds or jewelry, as my doctor isn’t impressed by such displays. Also, those fashion trends I usually ask for just don’t look the same on this “new/old” body. Not only that, it doesn’t go with my usually stringy hair that needs a salon and/or washing. In fact, a big, floppy, hat might be a good gift to put on when anyone comes to the door or I do venture out of the house, excuse the much too used and dirty bathrobe.If you could include a cure for saggy, droopy eyes with dark circles underneath….that would be a plus.

Santa, I hate to ask for these next two things as I know you are very busy and I do spend frivolously on all those medications and supplements I take, not to mention the innumerable doctor visits. But I could really use a cloned “me”. I know that’s a hard one to fill, but I only want a clone of the old “me” to do errands that are hard for me now like going to the mailbox. If that’s impossible, a trained golden retriever will do. The cloned “me” is really what I need, but in lieu of that, I’d also take a butler, maid, shopping service, and errand runner. If you could include the checks for their services, so much the better.

But Santa, if you really want to please me this year, could you find me a doctor that will listen? One whose eyes sparkle when he/she sees me. Also, one that doesn’t look at the floor during my visit, and isn’t afraid to touch me. I would really like a doctor who walks and talks, and who’d let me touch their hair. If they have a prescription pad and lots of friends who specialise in infectious diseases and heart problems, that would be just swell. You wouldn’t have to wrap the doctor up for me either. You could just leave the address and their home cell phone number on the napkin I leave your cookies on. I promise to be the best patient that even you, Santa, could ask for.

Oh, just one little thing more Santa. If you could leave a little “moola” for my friends barely scraping by this Christmas, they might be able to buy one of their supplements this holiday. Merry Christmas Santa and to all … goooooodddd bbbbbyyyyyeeeeee SSANTTTAA .. .gooottta go lay down now. move over Rudolph … zzzzzzzzzz ……