You are all well and good until you decide to dump yourself into bed. Bad move. Crashing into bed like that, so suddenly with everything finally completely relaxing at once and your walls are down, the onslaught of sensation is overwhelming.

It is at this point you realize there is no real “easy” day. Some days the pain is not so bad & on some of those days, we handle it better and think we are ok for a bit.

It is that time at the end of that “easy” day that you know you will always have some pain each and every day. Some days it’s nasty, some not so bad and some days we can handle it better than others – either emotionally, physically or with the help of medicine. We will always have pain, but we also look forward to tomorrow for another “easy” day. We also realize that while yes, we have pain each and every day but we also get through it each and every day. We survive and even thrive despite this disease and what it does to our minds and bodies.

We are strong.

Not having support from your family and friends will put a strain on these relationships impacting your stress level which can affect greatly both negative and positive on your health. Explanations need to be simple and straightforward. Tell someone about fibro without all the jargon so that healthy peoples eyes don’t glaze over two minutes into a conversation. You do not have to explain in extreme detail to produce an accurate picture or evoke an appropriate response.

Without a good explanation many people perceive persons with Fibro & CFS as not being sick but to be thought of as “lazy,” “a hypochondriac” or a “whiner.” We are none of these.

Here are several descriptions:

• “You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that’s how I feel. Only it does not go away.”
• “It is similar to working in the garden for two days all day as well as the flu, except that it does not go away.”
• “Fibromyalgia is like arthritis in the muscles.”
• To my 10 year old niece I said, “It’s like when you’ve played all day and you play so much that the next day you are tired and your muscles are so sore they hurt and it’s kind hard to get out of bed – it’s like that, but it’s every day, not just one day.” This, a child, understood, but her mother couldn’t.

What healthy people need to realize is that, we don’t want to be this way and if we could change it, we could. Would I trade living day after day in pain & exhaustion, taking seemingly limitless amount of medications for a healthy body but a 10 work day, 6 days a week with no meds?? God! Yes!
While we may “look” healthy, that does not mean we are feeling healthy. For women, makeup can hide a multitude of sins, including pale skin, tainted skin colour, bags under the eyes, and a general lackluster. Clothing choices and the way one presents oneself may no be for show, but for need. I may not use my cane cut it would be too painful in my shoulders to use it, but it does not necessarily mean I feel well.

Well meaning friends and support people have said “I’ve had that too!” And they may have, for a few hours, waking up improved the next day and well the day after. But it truth, No, she or she has not. They have bouts of being tired or sore from whatever over exertion they experience. They do not deal with the chronic day after day extreme fatigue, pain and many other accompanying symptoms and syndromes. They think think they know because of one day’s experience – they don’t.

There are some who believe that because we with FM do not follow their well meaning advice, that it is our own fault we are sick. Horse-pucky! Don’t put that BS guilt trip on anyone, let alone a fibromite. The last thing a person with FM needs is to feel blamed for being ill. It is not our fault.

Some tips when discussing fibro and what it is: Be honest. Beware of your audience – what a 10 year old understands, an adult may dismiss. Do not use excessive jargon – the biggest word should be fibromyalgia not neurotransmitters. Know what symptoms you what to emphasize. Recognize how much, if anything, they want to learn.

For those who would be interested in further explanations, there are many resources around. To start, I recommend the “Spoon Theory”.The author has lupus, a sibling condition with many overlapping symptoms.
Another resource is “the Letter to Normals”.

If you have any other suggestions, please feel free to post them here or email me.

I am my own worst enemy. Like many others with Fibromyalgia and Chronic Fatigue, I find the holidays a highly stressful and painful time of year instead of the joyful and happy time it should be.   I am too focused on the perceived expectations of others instead of the reality of my limitation and restrictions..  I know many of us want to accomplish what our bodies are simply not capable of, so we have to adjust our outlook and re-evaluate our priorities. The holidays are all about spending time with those we love most – keeping time and energy for what we hold most precious and dear. Doing so will help reduce the stress and thus the pain and emotional issues that crop up at Christmas.

Pace Yourself.. 
When you think “I’ll just  visit 1or 2 more shops, go up 1 or 2 more aisles, wrap 1 or 2 more presents, bake 1 or 2 more trays of cookies or do that 1 or 2 more things.” – Don’t! Stop before you get to that tired or hurt point. Don’t deal with a fibro or cfs flare, prevent one.

Decorate, but not too much..

Have a smaller tree with few decorations.   I have invited over the nieces in past and we made an afternoon of putting up the tree.

Have someone put up the outdoor lights.

Get a nativity scene that is pre-made as one unit and/or lightweight, so you don’t have to lug many pieces.  I have a smaller plastic Precious Memories one (which the kids love to play with) and a small water fountain of Joseph, Mary & baby Jesus.

Celebrate

Choose carefully to go only to 1 or 2 holiday parties, don’t accept every invite.

If you can, spend time with those you hold dear, not those who will cause stress.

Plan ahead how long you plan to stay and stick to it.

Always keep a supply of regular meds on hand, in case.

Delegate

Pass on some of the holiday chores to others so that while everyone shares the joy, they also share responsibility.

Cooking

Share these responsibilities or making an easier selection.

Do a pot luck dinner.

Choose a one dish dinner to limit the number of dishes.

Choose easier recipies.

Prep or make whatever can be done beforehand and refridgerate or freeze.

Keep to your normal eating habits as much as possible & do not overdo it on sweets and other foods.

Baking

Do a holiday cookie/snack exchange.

Bake cookies in stages – many recipes require overnight in the fridge.

Cheat – buy your cookies.. I know, not the same, but nothing’s the same anymore, is it?

Shopping

Online/catalogs/mail order gifts.

Gift cards & gift certificates.

Plan ahead, make a list & write it down.

Organize your trips into several short shopping trips.

Shop in the morning, or later in the evening when the crowds are thinner.

Start early – once I started on Dec 26th.

Take regular breaks to rest.

if you use a mobility device (cane, crutches, walker), take it with you even if you don’t need it yet

Use a shopping cart for stability, to carry parcals & outterwear.

Use a coat check if your mall has one so you don’t have to worry about your jacket.

Get salespeople for help if you can find them.

Always keep a supply of regular meds on hand, in case.

Wrapping Presents

Wrap using gift bags & tissue paper.

Take advantage of on-site wrapping services – many are for charity.

Holiday Cards

Do them well ahead of time like October or November,

Make labels so you’re not writing address after address, if even it’s ony the return address.

It’s been a hard day, and Joe’s back is killing him.
His wife has some Percocet left over from a trip to the dentist, and there’s that big bottle of Tylenol under the sink, so Joe grabs a couple of each and washes them down with a slug of beer.
Luckily for Joe, he’s a fictional character invented for this article. But there are a lot of real-life Joes out there making big mistakes with over-the-counter and prescription pain pills.
Can you spot Joe’s mistakes? Joe didn’t make every mistake in the book. But he made quite a few.

Here’s WebMD’s list of common pain pill mistakes, compiled with the help of pharmacist Kristen A. Binaso, RPh, spokeswoman for the American Pharmacists Association; and pain specialist Eric R. Haynes, MD, founder of Comprehensive Pain Management Partners in Trinity, Fla.

Pain Medications Mistake No.1: If 1 Is Good, 2 Must Be Better

Doctors prescribe pain pills at the doses they believe will offer the greatest benefit at the least risk. Doubling or tripling that dose won’t speed relief. But it can easily speed the onset of harmful side effects.

“The first dose of a pain medication may not work in five minutes the way you want. But this does not mean you should take five more,” Binaso says. “With some pain drugs, if you take additional doses, it makes the first dose not work as well. And with others, you end up in the emergency room.”

If you’ve given your pain medication time to work, and it still does not control your pain, don’t double down. See your doctor about why you’re still hurting.

“This ‘one is good so two must be better’ thing is a common problem,” Haynes says. “Patients should follow the instructions their doctor gives. Ask before leaving the office: Can I take an extra pill if I still hurt? What is the upper limit for this medication?”

Another bad idea is trying to boost the effect of one kind of pain pill by taking another.

“There may be Advil, Tylenol, Aleve, and ibuprofen in the house, and a person may take them all,” Binaso says.

This can escalate into a very bad situation, Haynes says.

Pain Medications Mistake No. 2: Duplication Overdose

People often take over-the-counter pain drugs — and even prescription pain drugs — without reading the label. That means they often don’t know which drugs they’re taking. That’s never a good idea.

And if they take another over-the-counter drug — either for extra pain relief or for other reasons — they may be getting an overdose. That’s because many OTC drugs are combination pills that carry a full dose of pain pill ingredients.

In Joe’s case, he’s taken a prescription pain pill that contains acetaminophen along with a second full dose of acetaminophen from Tylenol, putting him at risk of injury.

Pain Medications Mistake No. 3: Drinking While Taking Pain Drugs

Pain medications and alcohol generally enhance each other’s effect. That’s why many of these prescription medications carry a “no alcohol” sticker.

That sticker shows a martini glass-covered by the international “No” sign of a circle with a slash. But it applies to wine and beer just as much as it does to spirits.

“A common misperception is people see that sticker and think, ‘I’m OK as long as I don’t drink liquor — I can have a beer.’ But no alcohol means no alcohol,” Binaso says.

“The patient should heed that alcohol warning, because it can be a major problem if they do not,” Haynes says. “Alcohol can make you inebriated, and some pain medications can make you have that feeling as well. You can easily get yourself into trouble.”

Drinking alcohol can be a problem even with over-the-counter pain drugs.

“Drinking is an issue with ibuprofen. It can lead to bleeding ulcers,” Binaso says. “And the FDA is looking into acetaminophen. It is very safe, but we have reports of people who had more than one drink and took more than one daily dose of acetaminophen for a long time, and ended up with liver damage.”

Pain Medications Mistake No. 4: Drug Interactions

Before taking any pain pill, think about what other medicines, herbal remedies, and supplements you are taking. Some of these drugs and supplements may interact with pain medications or increase the risk of side effects.

For example, aspirin can affect the action of some non-insulin diabetes drugs; codeine and oxycodone can interfere with antidepressants.

You should give your doctor a complete list of all the drugs, herbs, and supplements you take — before getting any prescription.

If buying over-the-counter medications, Binaso recommends showing a list of everything else you’re taking to the pharmacist.

Pain Medications Mistake No. 5: Drugged Driving

Pain medications can make you drowsy. Different people react differently to different drugs.

“How I react to a pain medication is different from how you react,” Binaso says. “It may not make me drowsy, but may make you drowsy. So I recommend trying it at home first, and see how you feel. Don’t take two pills and go out driving.”

Pain Medications Mistake No. 6: Sharing Prescription Medicines

Unfortunately, it’s very common for people to share prescription medications with friends, relatives, and co-workers. Not smart, Haynes and Binaso say — particularly when it comes to pain medications.

“If a fairly healthy person is taking a medicine because she is in pain, and wants to give some pills to Uncle Joe because he is hurting — well, this is a potential problem,” Haynes says. “Uncle Joe may have a problem that keeps his body from eliminating the drug, or he may have an allergic reaction, or the drug may interact with a medication he is taking, with life-threatening results.”

Pain Medications Mistake No. 7: Not Talking to the Pharmacist

It’s not easy to read drug labels, even if you can make out the small print. If you have a question about either a prescription or OTC drug, ask the pharmacist.

“That’s why I’m in the store,” Binaso says. “You may have to wait a couple of minutes for me to finish what I’m doing. But you’ll get the information you need to take the right medicine the right way. Just say, ‘Tell me about this medicine; what should I be on the lookout for?’”

Pain Medications Mistake No. 8: Hoarding Dead Drugs

Joe’s wife is actually to blame for one of his mistakes. She should have disposed of those extra pain pills once she was over her dental pain.

Why? One reason is that pills stored at home start breaking down soon after their expiration date. That’s especially true of drugs kept in the moist environment of the bathroom medicine cabinet.

“People say, “That drug is only a year past its expiration date; isn’t it good?” But if you take a pill that’s broken down, it may not work — or you may end up in the emergency room because of reaction to a breakdown product. That is really common,” Binaso says.

Another reason that it’s dangerous to hoard is that the drugs may tempt someone else into making a very bad choice.

“Teen drug abuse is really up, especially with pain medications,” Binaso says. “It is not uncommon for kids to go to their parents’ or grandparents’ medicine cabinet and then go to a party and put the drugs in a bowl.”

Pain Medications Mistake No. 9: Breaking Unbreakable Pills

Pills are actually little drug-delivery machines. They don’t work the way they’re supposed to when taken apart the wrong way.

Scored pills should be cut only across the line, Binaso says. Those without scoring should not be cut at all, unless you’re specifically instructed to do so.

“When you start chopping up pills like that, the pill may not work,” she says. “We find more and more people are doing this. And then they say, “Oh, that pill had a really bad taste. That is because they cut away the coating.”

Between the CFS screwing with my sleep schedule, the IBS helping the CFS out with it’s erratic movements, and then adding my TMJ to the situation keeping me awake cuz the codeine contin doesn’t do shit.. I defiantly do not like my body.. Oddly, it’s X-Str Tylenol that helps my jaw, go figure..

And this is occurring when my fibro is actually in a temporary remission. Thanks be to God!

Why can’t this thing in which I am stuck just drop all the health bs for just one day – ALL of it.. *sigh* wow, that would be nice, but likely impossible..