Not asking for trouble... asking for help!

I understand that many people, if not most, will not understand my condition. I realize that it sometimes takes multiple rounds of explanation and neverending patience with my friends before they understand what kind of situation I'm dealing with. The same goes with work; I can't expect any coworker or boss to just 'understand' fibromyalgia/CFS and never question it... but when I do my best to bring it to their attention, with all proper documentation lined up, and with all of the information they could possibly need... only to be shut down.

My schedule change request was denied, which just means that I'm stuck on graveyard until someone else comes along and takes it. I realize it's not the easiest shift to hire someone into, and I would actually ENJOY the hours, if my body could handle the extra stress.

I have high levels of Epstein Barr in my system that occasionally spike up, causing me to have recurring bouts of Mono. It resides in my liver and will make me seriously ill if I get too little sleep, too much stress, or work my body too hard. All of which I'm accomplishing by working graveyard shifts. I'm killing myself without even trying!

I wish there were someone I could call for advice, or for support with this issue. Human Resources treats me like I'm a total waste of their time, and that I'm ridiculous for even asking for help. I have the EEOC contact process, but do I really want to escalate this issue to the state or federal level? I know retaliation is illegal, but PROVING retaliation is impossible, and I know it'll happen. It's happened to others before me, and I'm not so simple as to think she'll give me a break.

The facts are that I'm good at my job, I'm smart, and capable. This schedule diminishes my capabilities by about 50%, and makes me look simply adequate. If I got a good night's sleep, and settled into a regular schedule, I may have a shot at a normal life. Instead, I work overnight while others are sleeping, feeling my body get weaker and weaker, until I end up in the hospital for days. 

I'd really like to avoid sickness as much as I can... but there are some giant obstacles in my way. I work because I need the income, healthcare, and livelihood. I'm 27 years old and not about to bow out of the workplace due to an illness. I will get past this. I need to be given a fair opportunity to beat this, and then I can come back to work graveyards, if needed. I like my job, I like my team, and the company... but it goes to show, one person can really ruin it all. I'm somewhat appalled that the one person causing the stress hasn't been called on the carpet.

I'm all about accountability, and if something happens to me because I'm stuck between a rock and proverbial hard place... one person will be responsible.

Awareness... is sexy.

This is my type of awareness...

http://polkadotgals.com/index.html

All proceeds go to benefit Fibromyalgia awareness and research.

Amazing. I'm so, so thrilled that this is finally getting press.

I no longer feel like I'm alone and insane!

Fibromyalgia Awareness!

Fibromyalgia has been recognized by the WHO as a disease since 1992, as mentioned in the list ICO-10, M-79-7, even though it is still questioned by a number of medical professionals. Fibromyalgia is a condition which is characterized by chronic pain and many other symptoms; such as morning myo-acampsia (morning stiffness), sleep disorder, chronic fatigue, and overall fatigue of muscle groups.

Now the fight is happening in Europe, but amongst the entire union. America ignores this disease, doctors treat me like I'm insane, and then they recommend clinical trials that are a) impossible to get into and b) offer no relief to at least half of the participants due to placebo replacements. I can't imagine being on a placebo for six months, with no other meds, as they require. Absolutely absurd!

I encourage anyone aware of this disease to sign the following petition, even if not living in the European union. It's a beginning, somewhere to start, and if Europe is mecca for fibro patients, then it may be time for me to make the trek home. :)

The saddest thing to me is how far behind the US is compared to the rest of the world, yet we consider ourselves to be a leader. We're no leader. We're sheep to the rest of the world. Our current president has been a prime example of a retarded sheep, though I don't want to insult livestock, so I take it back. It's just time for change, and I'm tired of waiting for it, so I'm making it happen for myself.

The website for the European petition is at: http://www.enfa-europe.eu/indexpet.php

The reality of this situation, which affects all the European countries, is that the right of people affected by a chronic disease to have a good quality of life is being ignored. It is therefore called on the medical community, national and European policy makers:

• To fight against the skepticism around this disease
• To improve the quality of patients' lives
• To put in place an individual and interdisciplinary support programmes which allows the patient to stay economically and socially independent, and further avert any form of isolation
• To ensure in-depth training of this subject in the mandatory courses of medical experts and medical professionals
• To support and assist awareness programmes that will facilitate early diagnosis and early treatment, as well as access to care at any time.
• To allocate the adequate aid for scientific research against this pathology
• To put in place an EU programme on the exchange of best practices on Fibromyalgia

With this petition, I am signing for a European Union in which the rights of 14 million people affected by Fibromyalgia are recognized.

Pain Scale Information

For Children, usually:

http://en.wikipedia.org/wiki/Pain_scale

Pain is the Fifth Vital Sign.^[1] Pain scales measure patient's pain, using different methods. Pain may be evaluated as a single measure (intensity only) or using several measures (duration and intensity); the Wong-Baker FACES scale as shown above is a commonly used pain scale for pediatric patients and is now used for others; the Brief Pain Inventory uses an interview to assess how pain affects the ability to function in daily life.

For adults to rate pain:

http://en.wikipedia.org/wiki/McGill_Pain_Questionnaire

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971.

To use the questionnaire, circle the words that describe your pain but do not circle more than one word in a group. Then when you have that done, go back and circle the three words in groups 1-10 that most convey your pain response. Pick the two words in groups 11-15 that do the same thing. Then pick one word in group 16. Finally, pick 1 word in groups 17-20. At the end you should have seven words that you can take to your doctor that will help describe both the quality of your pain and the intensity of it.

Group 1 Flickering, Pulsing, Quivering, Throbbing, Beating, Pounding

Group 2 Jumping, Flashing, Shooting

Group 3 Pricking, Boring, Drilling, Stabbing

Group 4 Sharp, Gritting, Lacerating

Group 5 Pinching, Pressing, Gnawing, Cramping, Crushing

Group 6 Tugging, Pulling, Wrenching

Group 7 Hot, Burning, Scalding, Searing

Group 8 Tingling, Itching, Smarting, Stinging

Group 9 Dull, Sore, Hurting, Aching, Heavy

Group 10 Tender, Taunt, Rasping, Splitting

Group 11 Tiring, Exhausting

Group 12 Sickening, Suffocating

Group 13 Fearful, Frightful, Terrifying

Group 14 Punishing, Grueling, Cruel, Vicious, Killing

Group 15 Wretched, Binding

Group 16 Annoying, Troublesome, Miserable, Intense, Unbearable

Group 17 Spreading, Radiating, Penetrating, Piercing

Group 18 Tight, Numb, Squeezing, Drawing, Tearing

Group 19 Cool, Cold, Freezing

Group 20 Nagging, Nauseating, Agonizing, Dreadful, Torturing