Seven DEADly Sins

Last Wednesday, I had to wake up early (for me) to go have a barium swallow (for my lap-band) and a booby ultrasound (again! I have cyst-y boobs). On my way there I had pins and needles (paresthesia) up and down my left arm and, especially, in my fingers. Okay, just a normal part of waking up with FM, I thought; except it didn’t go away like it normally does. And 5 hours later, my fingers (on my left hand) started twitching all by themselves – this had never happened to me before. Other than this I felt normal (or as normal as we can be). What am I supposed to do here? is this a stroke?

I google then go to a mirror: my face is normal, I can lift both arms above my head, and I can speak properly; so, it doesn’t sound like a stroke but what the hell is it? I’m not sure this is an emergency.

I call Mommy (who is still laid up in bed, with a bulging disc sitting on one of her nerves, after 2 weeks). She asks me the same questions about stroke symptoms. She’s not sure this is an emergency.

stroke

ambulanceThen I take her advice and call Nurse-On-Call, describing all my symptoms. Guess what? The nurse is not sure so she puts me through to 000 (911 or 999) and an ambulance. Over the phone, they’re not sure…so, with blazing lights and a screaming siren, an ambulance arrives at my place and takes me to the ER.

We’re probably more sufficiently in tune with our bodies than others to know when the pain is from FM, perhaps the result of cleaning the house a day or two before or eating that third chocolate, or if it’s something else. It’s when pain might signal something more serious that the internal dialogue begins:

“OK, this isn’t something to fool around with.”
“But is it an emergency?”
“And what if it is an emergency and you can’t tell?”
“I’ll give it one more hour.”
Etc…

So how can we tell? Here are 7 pains you should NOT ignore:

  • Worst Headache of Your Life

Get medical attention immediately. “If you have a cold, it could be a sinus headache,” says Sandra Fryhofer, MD, MACP, spokeswoman for the American College of Physicians. “But you could have a brain haemorrhage or brain tumour. With any pain, unless you’re sure of what caused it, get it checked out.”

Sharon Brangman, MD, FACP, spokeswoman for the American Geriatrics Society, says that when someone says they have the worst headache of their life, “what we learned in medical training was that was a classic sign of a brain aneurysm. Go immediately to the ER.”

  • Pain or Discomfort in the Chest, Throat, Jaw, Shoulder, Arm, or Abdomen

Chest pain could be pneumonia or a heart attack. But be aware that heart conditions typically appear as discomfort, not pain. “Don’t wait for pain,” says cardiologist Jerome Cohen, MD. “Heart patients talk about pressure. They’ll clench their fist and put it over their chest or say it’s like an elephant sitting on their chest.”

The discomfort associated with heart disease could also be in the upper chest, throat, jaw, left shoulder or arm, or abdomen and might be accompanied by nausea. “I’m not too much worried about the 18-year-old, but if a person has unexplained, persistent discomfort and knows they’re high risk, they shouldn’t wait,” says Cohen. “Too often people delay because they misinterpret it as [heartburn] or GI distress. Call 911 or get to an emergency room or physician’s office. If it turns out to be something else, that’s great.”heart attack

“A woman’s discomfort signs can be more subtle,” says Cohen, who is director of preventive cardiology at Saint Louis University School of Medicine. “Heart disease can masquerade as GI symptoms, such as bloating, GI distress, or discomfort in the abdomen. It’s also associated with feeling tired. Risk for heart disease increases dramatically after menopause. It kills more women than men even though men are at higher risk at any age. Women and their physicians need to be on their toes.”

Intermittent discomfort should be taken seriously as well.

The problem here, for us, is we have these kinds of pains all the time – sometimes it’s persistent and sometimes it’s intermittent. If you’re in ANY doubt as to the cause of your pain/discomfort, get medical attention IMMEDIATELY!

  • Pain in Lower Back or Between Shoulder Blades

“Most often it’s arthritis,” says Brangman, who is professor and chief of geriatrics at SUNY Upstate Medical University in Syracuse, N.Y. Other possibilities include a heart attack or abdominal problems. “One danger is aortic dissection, which can appear as either a nagging or sudden pain. People who are at risk have conditions that can change the integrity of the vessel wall. These would include high blood pressure, a history of circulation problems, smoking, and diabetes.”

  • Severe Abdominal Pain

stomach painStill have your appendix? Don’t flirt with the possibility of a rupture. Gallbladder and pancreas problems, stomach ulcers, and intestinal blockages are some other possible causes of abdominal pain that need attention.

  • Calf Pain

One of the lesser known dangers is deep vein thrombosis (DVT), a blood clot that can occur in the leg’s deep veins. It can be life-threatening. “The danger is that a piece of the clot could break loose and cause pulmonary embolism [a clot in the lungs], which could be fatal,” says Fryhofer. Cancer, obesity, immobility due to prolonged bed rest or long-distance travel, pregnancy, and advanced age are among the risk factors.

“Sometimes there’s just swelling without pain,” says Brangman. “If you have swelling and pain in your calf muscles, see a doctor immediately.”

  • Burning Feet or Legs

Nearly one-quarter of people who have diabetes are undiagnosed, according to the American Diabetes Association. “In some people who don’t know they have diabetes, peripheral neuropathy could be one of the first signs,” says Brangman. “It’s a burning or pins-and-needles sensation in the feet or legs that can indicate nerve damage.”

  • Vague, Combined, or Medically Unexplained Pains

Sounds like FM, right?

“Various painful, physical symptoms are common in depression,” says psychiatrist Thomas Wise, MD. “Patients will have vague complaints of headaches, abdominal pain, or limb pain, sometimes in combination.”

Because the pain might be chronic and not terribly debilitating, depressed people, their families, and health care professionals might dismiss the symptoms. “Furthermore, the more depressed you are, the more difficulty you have describing your feelings,” says Wise, who is the psychiatry department chairman at Inova Fairfax Hospital in Fairfax, Va. “All of this can lead the clinician astray.”

Other symptoms must be present before a diagnosis of depression can be made. “Get help when you’ve lost interest in activities, you’re unable to work or think effectively, and you can’t get along with people,” he says. “And don’t suffer silently when you’re hurting.”

He adds there’s more to depression than deterioration of the quality of life. “It has to be treated aggressively before it causes structural changes in the brain.”

Needless to say, my symptoms were not caused from a stroke. I sat in the ER waiting room with a(nother) cannula in my hand (REALLY OW!) for an hour and a half, alone (with all the other ER patients). After that time, I approached the nurse and said, “I came here because my symptoms indicated that there may be something life-threatening going on. Obviously, there isn’t or you guys would have dealt with me, right? So, I’m going home.”

I went to my GP the next day, with fingers and arm still tingling, but everything else was (and still is) fine; so she just told me if it gets worse or changes or there are more symptoms, come back to her or call an ambulance.

The paresthesia went away after 2 days and I am back to my normal FM-ridden self. BUT, please, if you have a new or unexplained pain, or even if you’re just in doubt, get medical attention.

emergency

 

Sweet as Saccharine

I think that most of us have seen the Facebook post going around called Sweet Killer. I don’t know how much of the post is hyped up, but we do know that the (very) common excitotoxin called Aspartame is bad for us.

Excitotoxins are a necessary part of brain function – they get your neurons firing faster so that you can learn and process information quickly. They occur naturally in the brain. However, when you get too many of them in one area, they can over-simulate your neurons, cause multiple unpleasant symptoms, and even excite your brain cells to death.

Symptoms of high excitotoxin levels include:

  • mental misfires
  • amplified pain
  • uncontrollable anxiety and irritability

Sound familiar?

Now, back in March of last year, I gave up Pepsi Max. I didn’t really notice a difference except, having replaced Pepsi Max with flavoured mineral water, I gained more and more weight. (Have any of you noticed how many calories/kilojoules are in what I thought to be a healthier drink?)

logoSo, I decided I needed to do something about the extra weight. I pledged 30kgs to the Share the Weight campaign. DietRitePassionfruit1.25LWithout even thinking about it, I replaced the mineral water with a soda drink called Diet Rite – labelled 5% juice, low joule, natural colours, natural flavours and no added sugar. Sounds okay, right?

Well, today, I woke up with a headache which has been accompanying me everywhere (and getting worse) for about 4 weeks (anyone notice the date that I published Bigger is NOT Better!?) I don’t know what made me think about the soda but I did…finally.

Much as I hate it, it looks like I’ll be drinking water from now on!

P.S. MSG is another common excitotoxin.

 

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You are NOT your Illness!

Yesterday, I wrote about Learning to Live With the Loss of YOU and the framework that allows us to live with that loss. I talked about the uncontrollable anger that I am currently experiencing.

Chronic pain has a way of radically changing a person’s life; even those with strong self- esteem and coping skills struggle (yep, even me!). Healthy self-esteem enables us to accept, respect, trust and believe in ourselves. Chronic pain can take that away from us: for some, the most difficult blow comes when you can no longer do things connected to your identity (loss of a job, not being able to participate in sports or hobbies, not being able to spend time with friends); for others, using a cane or walker or having to use a handicapped placard is devastating.

chronic comic 176It’s a vicious cycle. Pain increases negative emotions such as anger and depression (and I’m really NOT looking forward to reaching that stage in the framework!) Anger, supposedly, is a necessary stage of the healing process; and anger has no limits – it can extend to your friends, your doctors, your family, yourself and even to God. Underneath all that anger is pain, YOUR pain…MY pain. It is natural to feel deserted and abandoned; and anger is an anchor, giving you temporary structure to the nothingness of loss. It builds a connection (from you to them). It is something to hold onto…and a connection built from the strength of anger feels better than nothing.

However, an increase in our negative emotions and other added stressors causes an increase in our pain. We’ve all read posts from people who have lost the desire to keep fighting their pain and fear their future. They have trouble asking for help and can even convince themselves that their loved ones would be better off if they were no longer a burden. Pain distorts our overall perception of our life, our contributions and past accomplishments.

But there is good news: a plan of action to help, based on two simple principles.

Care For Yourself

Treat yourself with the same respect you would give others. Get in touch with your needs. What would help and encourage you? Often just being listened to and validated is a powerful first step. Allow time for yourself. Get creative and explore new hobbies and interests that could decrease your pain through distraction.

chronic comic 167Allow yourself to have fun and laugh. Rent a funny movie, walk in the sunshine, take a bubble bath, listen to music, relax and meditate. Find things that are practical, affordable and available to you on a regular basis.

It is normal to get frustrated and to feel like we’ve done something wrong, and we often beat ourselves up because we feel like we should be doing more. That is what Cognitive Behavioral Therapists call this ‘catastrophic thinking.’ We need to challenge our distorted thoughts and learn to be grateful for what we have.

  • Remind yourself that you are worthwhile — you are valuable not because of what you can do but because of who you are
  • Stop comparing yourself to others — don’t let them define you; you control your heart and mind
  • Find new ways to express yourself — you still possess the same qualities; you just need a new way to share them with others
  • Grieve the loss of your “former self;” accept that some things have changed and embrace the ability to create a new vision for your future
  • Make every day meaningful — set S.M.A.R.T. goals that help you move forward

SSpecific: A specific goal has a much greater chance of being accomplished than a general goal. To set a specific goal you must answer the six “W” questions:

  • Who:      Who is involved?
  • What:     What do I want to accomplish?
  • Where:    Identify a location.
  • When:     Establish a time frame.
  • Which:    Identify requirements and constraints.
  • Why:      Specific reasons, purpose or benefits of accomplishing the goal.

EXAMPLE:  A general goal would be, “Get in shape.” But a specific goal would say, “Join a health club and workout 3 days a week.”

mMeasurable – Establish concrete criteria for measuring progress toward the attainment of each goal you set.

When you measure your progress, you stay on track, reach your target dates, and experience the exhilaration of achievement that spurs you on to continued effort required to reach your goal.

To determine if your goal is measurable, ask questions such as: How much? How many? How will I know when it is accomplished?

aAttainable – When you identify goals that are most important to you, you begin to figure out ways you can make them come true. You develop the attitudes, abilities, skills, and financial capacity to reach them. You begin seeing previously overlooked opportunities to bring yourself closer to the achievement of your goals.

You can attain most any goal you set when you plan your steps wisely and establish a time frame that allows you to carry out those steps. Goals that may have seemed far away and out of reach eventually move closer and become attainable, not because your goals shrink, but because you grow and expand to match them.

A goal can be both high and attainable; you are the only one who can decide just how high your goal should be. But be sure that every goal represents substantial progress. A high goal is frequently easier to reach than a low one because a low goal exerts low motivational force. Some of the hardest jobs you ever accomplished actually seem easy simply because they were a labour of love. When you list your goals you build your self-image. You see yourself as worthy of these goals, and develop the traits and personality that allow you to possess them.

rRelevant– To be relevant, your goals must pertinent. A bank manager’s goal to Make 50 peanut butter and jelly sandwiches by 2:00pm may be Specific, Measurable, Attainable, and Timely, but lacks Relevance. A goal that supports or is in alignment with other goals would be considered a relevant goal.

A relevant goal can answer yes to these questions:

  • Does this seem worthwhile?
  • Is this the right time?
  • Does this match our other efforts/needs?
  • Are you the right person?
  • Is this acceptable for correction?

tTimely – A goal should be grounded within a time frame. With no time frame tied to it there’s no sense of urgency. If you want to lose 10 lbs, when do you want to lose it by? ‘Someday’ won’t work. But if you anchor it within a timeframe, ‘by May 1st,’ then you’ve set your unconscious mind into motion to begin working on the goal.

Develop a Support Network

This isn’t always as easy as it sounds. Family, friends and faith are the most common relationships we rely on in times of need. Chronic pain touches every aspect of your life which makes it critical to surround ourselves with others who are supportive and understanding of our pain. chronic comic 174Family and friends may not want to hear about your pain and may become uncomfortable being around you and watching you suffer, but it is important to talk about it. Research has shown that family and friends play a tremendous role in helping patients deal with a chronic illness. But sometimes it is difficult for a) you to let those people in, and b) for those people to know what to do help. (You can find some tips for both them and you at Chronic Counsel)

Some healthcare professionals even have trouble listening to and validating chronic pain patients. Learning to be more assertive and planning goals for doctor visits can help. You need to take an active role in your healthcare.

Many find encouragement and resources through their faith to help them see a bigger picture than their daily pain and suffering. Some people want to make a difference in their community. Research shows that when people volunteer and help others, they seem to do better finding meaning and purpose in their own lives. We need to be connected to others — don’t try to fight your pain alone.

To improve your self-esteem and apply these strategies, you need to make yourself a priority and have people in your life who love you unconditionally. Being in a group or seeing a counsellor can help hold you accountable so you don’t give up before seeing the results of your efforts. Your pain does not define you — take control and believe in yourself. You are worth it!

tumblr_me0anefzBE1qbwncmo1_250

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Another One Bites the Dust

Back in April, I wrote the article that follows. And, despite writing the article myself, it appears that I obviously haven’t been able to identify where I stood within the grief scale.

Guess what? I now know.

How did I reach this epiphany? Well, recently Mommy mentioned (as carefully as possible) that she felt like she was stepping on egg-shells whenever she was around me. Then tonight, a so-called friend and I were texting when he wrote:

Last two texts I’ve got from you have been sarcastic and unnecessary and you think that’s how “friends” talk to one another. You wanna know something about me, I don’t wanna talk to people who are like that.

I answered:

It started because you wouldn’t tell me why you were feeling sorry for yourself…but as I said I’m angry so you needn’t talk to me anymore.

So I sit here on a Friday night, surrounded by all my friends (that is: alone!), as another one bites the dust!

Living With the Loss of You

There are 5 stages that make up the framework that allows us to live with loss: denial, anger, bargaining, depression and acceptance. They are tools to help us frame and identify what we may be feeling. They can also be applied our grief over the loss of our ‘old’ selves.

These tools are not stations on a train line. Not everyone goes through all of them or in a prescribed order. Have you been to any of these places? Stuck at one?

As you accept the reality of loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade.

But as you proceed, all the feelings you were denying begin to surface…

People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage like getting on and off a train. We may feel one, then another and back again to the first one.

At times, people in grief will often report more stages. Just remember your grief is as unique as you are.

Caring for Your Carer

If we are lucky, we have friends, family and/or partners to help and support us – but do you let them know how much you appreciate them? Love them? Couldn’t live without them? These are our care-givers. (In case you didn’t know, I love you, Mommy! I appreciate you and I can’t live without you!)

Thank You!

I really appreciate you,
Your helpful, giving ways,
And how your generous heart
Your unselfishness displays.

I thank you for your kindness,
I will not soon forget;
You’re one of the nicest people
I have ever met.

Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail & aged. There are currently over 2.6 million unpaid family carers in Australia, more than 770,000 of whom are primary carers – the people who provide the most care (Australian Bureau of Statistics (2009) Survey of Disability, Ageing and Carers).

You Didn’t Have To

Thank you for what you did;
You didn’t have to do it.
I’m glad someone like you
Could help me to get through it.

I’ll always think of you
With a glad and grateful heart;
You are very special;
I knew it from the start!

On average carers spend approximately 40 hours per week providing care.  It is estimated that carers of someone with a mental illness spend on average 104 hours per week in the caring role (Mental Health Council of Australia and Carers Australia (2000) Carers of People with Mental Illness).

Help and Caring

Thanks for doing what you did;
You are kind beyond belief;
Your help and caring calmed me down,
And gave me soothing relief.

Carers often experience reduced physical, mental and emotional health once their caring commences.  Over time the effects of caring may intensify. It is also important for the carers to look after themselves. Carers also need to manage stress, eat well and exercise.

It Doesn’t Seem Enough

I want to tell you “Thank you,”
But it doesn’t seem enough.
Words don’t seem sufficient–
“Blah, blah” and all that stuff.

Please know I have deep feelings
About your generous act.
I really appreciate you;
You’re special, and that’s a fact!

Caring can be physically and emotionally exhausting. Regular breaks from caring can help relieve their stress and exhaustion.

For All You Do

Thank you so much for all you do;
You’re truly a delight;
When my life overwhelms and does me in,
You make everything all right.

The people who care for us often have no choice about their roles. The constant demands of caring and the many changes in family life may bring about a range of feelings and emotions. Some people may feel a sense of satisfaction about being a carer. Others may feel angry and overwhelmed at times. These emotions can be difficult to cope with.

Priorities

Thank you…
for thinking of me
and then wondering
how you could help.
Thank you…
for doing what you did,
instead of being too busy,
or just forgetting about it.
Thank you…
For inking me
on your priority to-do list,
when you have
so many other things to do;
I am honored;
It meant a lot to me.
Thank you.

Maybe it’s time to celebrate and acknowledge the vital role carers play in our lives. Maybe it’s time to say Thank You, I Love You, You’re Fantastic?

 You Made My Day

I appreciate your kindness
More than words can say;
The very nice thing you did for me
Really made my day!

You could drop over with a fruit platter, cake or a bunch of flowers, just to say hello and acknowledge the great job they are doing. You could write a short note of appreciation and leave it in their letter box. You could give them a voucher for a massage or one from a retail outlet like a book shop.

There are so many ways you can say ‘thanks’ to a carer you know or know of.

Poetry by Joanne Kuchs

10 Things You Must Give Up to Move Forward

Hoping that you’re all over any New Year flares and starting on beginning 2013 renewed, strong and positive. In keeping with resolutions and goals, here’s a list of things you must be willing to give up to move forward…


chronic comic 172#1 Letting the opinions of others control your life

  • It’s not what others think, it’s what you think about yourself that counts
  • You have to do exactly what’s best for you and your life, not what’s best for everyone else

#2 The shame of past failures

  • Your past does not equal your future
  • All that matters is what you do right now

#3 Being indecisive about what you want

  • You will never leave where you are until you decide where you would rather be
  • Make a decision to figure out what you want, and then pursue it passionately

105. ignore#4 Procrastinating on the goals that matter to you

  • There are two primary choices in life; to accept conditions as they exist, or accept the responsibility for changing them
  • The best time to plant a tree is twenty years ago. The second best time is NOW

#5 Choosing to do nothing

  • You don’t get to choose how you are going to die, or when.
  • You can only decide how you are going to live, right now.
  • Every day is a new chance to choose.

#6 Your need to be right

  • Aim for success, but never give up your right to be wrong
  • Because when you do, you will also lose your ability to learn new things and move forward with your life

#7 Running from problems that should be fixed

  • Stop running!
  • Face these issues, fix the problems, communicate, appreciate, forgive and LOVE the people in your life who deserve it

#8 Making excuses rather than decisions

  • Most long-term failures are the outcome of people who make excuses instead of decisions

73. miserable#9 Overlooking the positive points in your life

  • What you see often depends entirely on what you’re looking for
  • You will have a hard time ever being happy if you aren’t thankful for the good things in your life right now

#10 Not appreciating the present moment

  • Too often we try to accomplish something big without realising that the greatest part of life is made up of the little things

 

Where are You Going in 2013?

Reprinted from the December issue of LIVING WELL with FIBROMYALGIA.  
Elissa TomasiniWritten by Elissa Tomasini, who also writes a blog about managing chronic pain with resources & support, and information about health coaching: http://chronicpainjournals.com/

I absolutely love making goals & creating plans.  It inspires me to dream & make positive changes to my life.  I can take time to reflect on what in my life is or isn’t working, & look at ways to move in the direction I want for my life.

goals 1

I find that making goals in life works best when it starts with listing out my own values.  This gives me a framework for deciding where to invest my time, & when it might be best to change a course.  Because my values are also about relationships, this helps me to include people in my goals, not just concrete goals around accomplishments.  I include values of self-improvement & character traits I aspire to.  Though these may not be as measurable, my personal integrity is more important than the accomplishments I make.

I have a list of seventeen top values that I have revamped over the years.  My overall mission statement is:  I will strive for growth, healing & deeper spirituality, where I can truly love others, giving joy, grace, & peace to those I meet.  Some of my values include building strong relationships with family, friends & neighbours.  Others are about personal traits such as saying I am sorry, being forgiving, having fun & living a life of integrity.  I also include fitness & health, making a difference, being financially secure & helping people in need.

goals 2Next I start with a free-write (brainstorm) of goals & hopes of what I would like to accomplish.  This might be short-term or long-term ideas, as well as self-improvement type of goals.  I try to avoid thinking too rationally when writing out my dreams, as this is something I will do later.  For some, this might be better done by writing in paragraph form visualizing the life they wish to have, others prefer lists.  It can sometimes help to look around at people you admire, & what are the traits & actions that draw you to them.

Once I have a list of goals & dreams, I begin to group them into categories & time lines for further evaluation.  I will group together health goals, relationship goals, spiritual, personal trait goals, finances, etc.   With each group I will think about what I can do in the next year to make progress in this area.  For relationship goals it might be scheduling dates with my husband, planning some vacations &/or having a game night. For health goals it could be losing weight, going to a new doctor, trying a new exercise &/or meditating self-compassion.

goals 3One thing to remember with goals is that it is about progress, not perfection.  In 2012, I had a list of about 40 goals & I accomplished about 60% of them.  Some of these goals were minor, such as putting pictures in frames & going through donations.  Other goals were more significant like starting my blog & going back to yoga class.  I never did finish doing touch-up painting around the house, but I am okay with putting this off another year.  Even though I didn’t finish everything on my list, I can see that the year 2012 was filled with some new adventures & progress in areas that matter to me.  The other goals I didn’t finish I can evaluate whether this is something I want to reconsider in the next year.  Fortunately, 2013 brings new opportunities.

I am excited for what 2013 can bring & my personal goal of implementing the 15M plan.  For 2013, I am going to focus more on making life style changes in increments.  The 15M plan allows me to make progress even in the more difficult health days, as I focus on spending 15 minutes on the desired activity each day.  Often when I am tired or feeling a great deal of pain, I lay on the couch a good part of the day & isolate.  If I can focus first on 15 minutes of some type of exercise, it is a goal I should be able to attain most days, resulting in less discouragement & better health.  When I am feeling good, I will most likely do more, but on a bad day this can help me shift gears.   I will add other areas that I want to progress in such as writing, family time, cooking & doing chores.

Like many of us, I have goals for improving my health in 2013.  I plan to do some experiments with the types of food I eat to see if they may be adding to my symptoms.  I also will be doing health coaching for other people who want to improve their health.  I hope to be able to make an impact on people struggling with chronic health problems & to give hope.  I want to strive for more consistency in my life, & learn to work around the tough days.

Making goals can be a simple process or something you spend weeks processing & planning.  The most important thing is to make some progress.  Taking 15 minutes to write down 10 goals is a great beginning.  For the artist among us, one can draw or clip out pictures from a magazine instead.  You can post the list on your refrigerator or bathroom mirror.  Others may prefer to spend some time evaluating last year, writing out values, & creating a detailed plan for 2013 like I have done.  Finding a buddy to share it with might help keep you motivated & encourage a friend at the same time.

May 2013 bring you some great learning experiences & opportunities.  May you see an impact towards the values you hold dear & be an encouragement to those in your path.

goals 4

Pain Pill Mistakes that may lead to a Ketamine Infusion

As regular readers know, about 3 weeks ago, I had a ketamine infusion. Part of the reason for this was I was addicted to codeine-based painkillers. I was unable to go cold-turkey and undertook the infusion to avoid all those horrible withdrawal symptoms.

Basically, this addiction came about because I made some pretty common pain pill mistakes.

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,” Kristen A. Binaso, RPh, spokeswoman for the American Pharmacists Association, 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 (and, hopefully, there is something that will help more).

pills“This ‘one is good so two must be better’ thing is a common problem,” says pain specialist Eric R. Haynes, MD, founder of Comprehensive Pain Management Partners in Trinity, Fla. “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 – welcome to a fast-forward approach to end up with a cannula in your arm and a week worth of ketamine!

Mistake No. 2: Duplication Overdose

People often take over-the-counter pain drugs – and even prescription pain drugs – without reading the label. Never a good idea – it means that you often don’t know which drugs you’re taking.

And if you take another over-the-counter drug – for any reason – you could wind up in a hospital ER with an overdose. That’s because many OTC drugs are combination pills that carry a full dose of pain pill ingredients.

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.

“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.

Mistake No. 4: Drug Interactions

PILLSBefore 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.

I suggest you try a drug interaction checker, if in doubt; and/or keep an updated list of your medications on your phone or computer so you can 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.

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.”

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.”

Mistake No. 7: Not Talking to the Pharmacist

22. pillIt’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?'”

Mistake No. 8: Hoarding Dead Drugs

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 (your son or daughter?) into making a very bad choice.

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.”

The Accidental Addict

On Sunday, The Age had a couple of articles about opiods. This is an edited version (with my additions):

Narelle Caldwell had to wean herself off oxycodone and now uses meditation and exercise to help manage her pain. Photo: Brock Perks

At first, the opioid known as oxycodone worked like magic, dissolving the pain from a slipped disc between her shoulder blades almost instantly. But over the course of a few weeks, its power started to wear off. Fearful her pain would return, Caldwell started to watch the clock. She was counting down the minutes until she could take another pill.

”It completely took over my thinking,” she says. ”I couldn’t function without it. I was completely consumed by the fear of the pain and what it was going to do to me.”

The oxycodone gave her a pleasant feeling, too. Not a euphoric high, but a sense of relief and relaxation that made her feel a bit dopey. Caldwell tried to stick to the recommended times to take her pills, but as her tolerance grew, she couldn’t resist taking them more often. After two months of chasing her pain with various opioid formulas and other medications to offset their side effects, her boss suggested she do a three-week pain management course.

She agreed and when she got in, a doctor told her she had to come off the drugs so she could find other ways to manage her pain. It was going to be an uncomfortable ride, he said, because whether she liked it or not, she was already dependent and had to withdraw.

This is what happened with me at my pain treatment course, where I met with a physio, occupational therapist and a pain management doctor. The pain management doctor told me exactly the same thing; and I tried to quit straight after my Bali trip.

”It was amazing. When I stopped taking them, I went through the whole thing, I had night sweats, I couldn’t sleep, I was agitated and fidgety and I was having mood swings,” Caldwell says. ”It took about two weeks for the drug haze to lift.”

I was unable to last as long as Narelle.  I couldn’t handle the cold turkey, at all, and only lasted 2 days.

Since the course, Caldwell, 49, has stayed off opioids and now manages her pain with meditation and exercise, among other things. She says her short time on oxycodone introduced her to the intense pull of addiction. She can see how some get lost forever.

”I’m so glad I got into that program because if I didn’t, I would still be taking those drugs and wouldn’t have a life,” she says.

Caldwell, a well-educated woman who has never smoked, let alone taken illicit drugs regularly, is one of a growing number of Australians who have got hooked on opioid painkillers.

And that would be why I am having the ketamine/lignocaine infusion. Yes, now that the gallbladder operation is over, we’re onto the next hospital stay (good thing I only have to pay my hospital excess once per year!)

Prescription of the drugs, which were once reserved for acute pain such as broken bones or post-surgical wounds, has soared over the past two decades as doctors started thinking they were useful for chronic pain and degenerative conditions like arthritis. But the shift has had unintended consequences. Many patients are being given them for long periods of time, causing them to spiral into addiction or worse – overdose.

Wider availability of the drugs has also created a thriving black market. As drug companies started making them in every conceivable form – pills, patches, syrups, suppositories, nasal sprays, the list goes on – illicit drug users increasingly realised they, too, could use the drugs to get high.

Some doctors now believe elderly people – the group most commonly prescribed opioids – are selling their drugs or passing them on to demanding friends and relatives who are misusing them.

The phenomenon, known as fossil pharming, is worrying Adelaide pain specialist Dr Penny Briscoe, who says all Australian patients on opioids should be routinely drug tested to make sure they are actually taking their drugs.

”People are saying they are getting them out of their grandmothers’ cupboards and we’ve had one palliative care patient admit to selling them to supplement his income – so diversion is occurring, we just don’t know how common it is,” she says.

Aside from concerns about diversion, doctors have very good reason to closely monitor their patients’ opioid use. Accidental and intentional overdose deaths are mounting, and many are being reviewed by coroners who are asking what went wrong. In most cases, the deceased have mixed their drugs with alcohol or other medications, causing respiratory failure or aspiration – the inhalation of saliva, food or other liquids into their lungs.

While some people can function well on opioids for a long time, says Head of addiction medicine at Melbourne’s Western Hospital, Dr Mike McDonough, the painkillers are turning some ordinary people with no history of substance abuse into addicts. In some specialist pain clinics, he says these people are sharing tips in waiting rooms about how to crush their tablets and inject them because their doctors are not giving them enough to satisfy their need. ”These are people who would have never imagined themselves injecting drugs.”

McDonough says doctors and governments are now debating ways of limiting supply of the drugs to reduce harm in a way that does not deny doctors reasonable access to them to treat pain. While opioids have their place, he says GPs need to know there is no evidence supporting their long-term use for chronic pain.

”These people still need care, so GPs can’t shut their doors to them but they also need to know when they’re doing more harm than good … We need to give GPs the tools to manage these people because the numbers are only going to get more difficult.”

And this is very important – we still need some sort of help for our FM pain. However, one of the BIG problems is:

”As a GP, I can earn more money treating someone for a cold than treating someone for an opiate addiction, so the economics are against it,” Adelaide-based GP and addiction medicine specialist Dr Philip Crowley says. ”These people are complicated patients as well, they take time and they are high risk. If something goes wrong, they can die.”

Associate Professor Milton Cohen, a pain specialist at St Vincent’s Hospital in Sydney who recently worked on new opioid prescribing guidelines for the Australian and New Zealand College of Anaesthetists Faculty of Pain Medicine, says about one in five Australians has chronic pain – consistent daily pain that lasts for three months or more – and that only about half of them find opioids useful for pain management.

”Having chronic pain is already quite stigmatising. People are called bludgers or accused of putting it on and now, if they’re being prescribed these drugs, they are presumed to be addicts,” he says. ”Opioids are not the be all and end all, but if they’re used properly they can improve people’s quality of life.

”We’re interested in the quality use of opioids, using them for the right person at the right dose and for the right time, so if this is getting out of hand we need to be able to track it.”

Narelle Caldwell backs the call for action. In particular, she says the government should boost specialist pain management services so people can learn to manage pain without drugs sooner rather than later.

I agree with Narelle – we need appropriate pain management services. Stop just throwing drugs at us, and help us feel better NOW!

 

GRIPE SESSION

 

Yesterday, after reading some posts on other Facebook sites, I thought about how positive we all have to be – ALL of the time! But, sometimes we need to let it all out, right?

So, instead of all the ‘I’m grateful for…’ or ‘I’m looking forward to…’ type discussions, I decided to encourage a GRIPE SESSION about Fibro! And WOW! What a response – it appears that we (as a group) really NEED to vent every now and then…and there is nowhere to do it.

Each post was to begin with ‘I hate’. The first one is mine. The remainder are the unedited comments from the post. Feel free to add yours in the comments area.

I HATE that I had to phone my Mommy at 10pm last night, for help, because I was in so much pain that I couldn’t lift my head, let alone get myself into bed! I HATE that I have a giant pile of clean laundry sitting in my bedroom that I haven’t got the energy to put away properly! I HATE that there is stuff all over my house because I need to say that I’ll put it away later! I HATE that I was unable to go more than 2 days without codeine!

I totally hate that I get about a chore and a half done and I feel like I could sleep for a week. I hate that I have to take naps throughout the day. I hate the my guy doesn’t understand what I go through and looks at me as lazy. I hate that I don’t have the ambition I used to and that the depression makes me wonder why I even try to fight each day. I hate that almost nobody I know understands my medical issues and looks at me like I’m worthless and less of a person.

I hate that I can’t play the sports that I used to love playing!

i hate that everyone thinks they “know” how i feel! really, you dont! i hate that im constantly ruining plans with my kids and friends. and lastly i hate how im not the person i want to be or used to be

I HATE always having to say I hurt and having people look at me like I grew 2 extra heads. I HATE not being able to go hiking, bike rides, a walk on the beach or even cleaning my house like I used to!

I HATE that I have to LIVE taking a handful of pills to feel somewhat normal! I HATE that I can’t just get up & enjoy the day, playing, going out around town with my kids! I HATE not being able to do any physical exercises to help strengthen me! I HATE not being able to clean my house daily, fold & put away clothes!! I HATE that I can never sleep without taking tranquilizers!!! I HATE FIBRO!!!!!

I hate that people think I’m fat and lazy. I hate that others just look at me and automatically assume i can do anything they ask me to do and if i have to say no, they get upset. I hate that i feel i sleep most of my life away. I hate that i can’t clean my house by myself. Ugh!

I HATE FIBROMYALGIA AND ALL IT HAS CHANGED ABOUT ME! PERIOD…

I hate that some people think I’m stupid because the fibro fog makes me stumble over my words. (I’m not stupid…I’m a PhD student!) I also hate that I can’t enjoy day-long activities that involve plenty of walking (like going to a Renaissance fair or state fair) without getting completely exhausted. And I hate having allodynia, especially when my husband is trying to be affectionate.

I hate that my muscles have been in spasm since Tuesday. I hate that I had to take Roxicet and a muscle relaxer, which made me sleep instead of live. I hate that I have a bunch of clean laundry that I can’t even fold, much less put away. I hate when I’m so tired I just want to sleep for a week. I hate that, although I’m excited about my upcoming vacation, I’m scared that I will be too sick to enjoy it or do the things we have planned and paid for. I hate that I have this stupid fucking disease!

Theres a List, but I cant say………… what I really want to!

I hate’ that I have to take breaks everytime I do things!!!. My energy is never high!!. Thanks Fibro

I HATE THAT I HAVE NOT BEEN ABLE IN 10 YRS DO CLEAN MY HOME OR WLAK MY DOG OR WALK FOR ME!!!!!

It is a new day everyday . The sin gets worse with age!

I HATE Being in pain and crying myself to sleep. I HATE that my ankles swell up so bad. I HATE the days that my feet hurt to touch the ground and my hands hurt to hold my phone and it hurts to talk. I HATE that I don’t want to go out anymore because once the pain hits I just want to go home. I HATE that no matter how many hours of sleep I get I am still tired. I HATE that people don’t understand what I go thru. I HATE that My meds don’t help me. I HATE that I always sound like I am complaining when I say I am in pain.

I hate that I had to have a neighbor come over today and clean my house so that the chimney and furnace guys could get to what they need to get to tomorrow. I hate feeling useless. I hate the fact that even with all the pills I take I still don’t feel able to do the things I need and want to do.

I think I just agree w all of the above I HATE this illness!!!

Agree!

I hate that I can’t work anymore! I hate the way people look at me thinking I’m overweight and lazy! I hate that I can’t go out with friends! I hate that my memory keeps going! I hate I can’t remember what else I hate!

I hate that I can’t work. I hate being broke. And broken. I hate not being able to be active with my daughter. I hate that I lost everything from getting sick. I hate that people don’t understand! I hate being seen as lazy! I hate being forced onto state insurance, being seen as welfare. I hate having lost interest in fun activities (too physically demanding), I hate having my dreams and desires on hold, I hate doubting they’ll ever come true now! I hate that fibro ruined my relationship with my boyfriend. I hate hurting, everyday, all day long. I hate battling with disability companies. I hate hate hate being fluorescent light intolerant!!!!!

I hate that I cant play in the park with my kids for than a min before i need a break I hate not enjoying rain I hate being so tired I dont even get dressed n stay in bed!!!!!!! FU FYBRO!!!!!

I hate that I have to agree with each and everyone hates! I hate crying myself to sleep, I hate taking all the meds, I hate that everyone thinks they know how I feel.

i hate that i go to bed hurting and then wake up hurting, i hate that i have to take narcotics every day to get such a little bit of relief, i hate that i don’t ever feel like doing anything, i have that i always feel so bad that i don’t get to go to any of the activity’s my daughter does i hate that when i do get up and go to the grocery store that by the time i am half way thru the store i hurt so bad i can hardly walk and i could go on and on and on

I feel the VERY SAME WAY on a daily basis!

I hate it all! I hate I have to keep a bag of meds beside me all the time everywhere I go, I hate that I get tired and have to stop less than half the way through a chore I need to do for the house. I hate that my child always feels the need to ask how I’m feeling everyday and how I have to ruin some plans if its a really bad day. I hate I am no longer a “productive” person and I am not able to do the jobs that I have the education and certification to do. I hate never having any energy. I hate that the couch is more comfortable than the bed for me and don’t get to sleep beside my husband for more than a few hours cause my hips and back hurt so bad. I hate the judgement from others at the amount and type medicine I have to take everyday. I hate when people say they have the same condition as I do and pop 2 advils or tylenol and it makes them better–they don’t hurt like I do.

I hate that I am not working, I hate that I can’t clean my home the way I want to I hate that I hurt I hate that everyday can’t be a good day. Thank you

I hate hurting everyday, I hate that I don’t feel like going to see my family more, I hate that I can not do the things I want to because of the pain.

I agree and also hate everything mentioned above. I hate that I also passed this to my oldest daughter, and she has it worse than me. I hate that my house is always a pig sty. I hate that I fight with my youngest daughter every time she wants to go shopping because I don’t have the energy to even think about walking around a store. I hate that she thinks I don’t love her because of this. I hate, hate, hate FIBROMYALGIA!

I hate that when I get out of bed in the morning every morning.I feel about 95 not 33 and my body hurts like i’ve got the flu everyday…No one understands!!!!!! That I still have to try and live a normal adult life,work,clean the house and take care of my children as if i’m not suffering ever moment….I’m an aide which I love but I want to be the person in that hospital bed most of the time>>>LOL…Besides all thatLife is wonderful!!!!! Bless everyone who has to deal with some sort of chronic pain.

I hate the fact I am always in pain and I feel like I am worthless because I have a chronic illness

This is great to hear all of this from others to know that I am not alone in my tears and frustrations. I am irritated the most by people who really never comprehend what I go through daily. I also cannot stand when that look of confusion or pity comes over their faces. I was such an active person and while I keep fighting, I feel like I am losing the battle. I cannot give up because I refuse to let this take everything from me. So I struggle through the pain and fatigue, praying for a break, in what seems to be a neverending flare! I long to be the physically and mentally strong person I used to be. Why can’t these damn docs come up with a better plan knowing how many people are pained by this? Why are we seen as jokes when we file for disability? I worry about my future…

I despise that there are so many millions of people that suffer from chronic pain, lack of sleep and not having a great support system within their own environment. After reading all these comments, I am sadden that soooo many struggle, yet I am delighted to know I am not alone!!!!

I just miss sleep. Real, deep, restful sleep!

Omg, I need to add one to my list. I HATE that my boyfriend down plays my illness and multitude of dibilitating symptoms, he gives me absolutely no empathy, sympathy, understanding, etc., he has called me worthless, he doesn’t even try to understand….. But…. When HE hurts, or is sick, or has a headache… He whines to me about me! And wants my sympathy!!! Really???? I HATE THAT!!!!

i hate that the pain never stops, hate that i can’t clean my house the way i used to, hate that i can’t go shopping without being wiped out ad hurting for days, hate that i don’t have the eergy t spend time with my kids, hate that this has robbed me from having a normal relationship with my husband, hate that fibro has destroyed my life!

I hate that I can relate to every hate above. I hate that I am a shut-in. I hate that I was awoken at 5:20 am on this Sunday because the pain was so…. intense. I hate that I don’t believe there will ever be a cure for this illness :/ XOxo… “God bless, prayers to all.”

I hate, HATE HATE all that fibro’s taken away from me ~ the ability to work, can’t walk for more than half a mile (the crippled foot adds to that), travel is so hard, hate that I can’t even clean my own home, hate that taking my dog to the park is so exhausting I’m laid up for two days afterwards, hate that even taking the top down on my car is too much, hate that I can’t remember so much of what’s been going on around me and in front of my very eyes, hate that the best thing I’m supposed to do is get some cardio, and I hate cardio because it just wipes me out, even when I start small and try to build on it. And I hate that very few people understand the insidiousness of this chronic pain disease shit. My husband tries to understand, but he still doesn’t really get it. But I WILL NOT LAY DOWN AND DIE, DAMMIT. I will ALWAYS get back up again.

I hate being this young and feeling so old. I hate being in tears after a day at the zoo with my boys. I hate the frustration of being unable to exercise and be in shape. So depressing. I hate taking so long to try to even get out of bed.

I hate not being able to have my old life!

I hate the fact that I am a fraction of the person I used to be. I hate the fact that I don’t want people to touch me because it hurts too much…

I rather die, that live forever kneeling…

I hate…that I could not get up to go to church! I hate that in the afternoon I went garage sale shopping (my favorite) and had to give up and go to my daughters house and lay on her couch because I was completely drained. I hate not taking any pain killers because out of my own free will decided to leave them cold turkey since last January. I will NOT go back on them. I hate the depression I have had for over 10 months, I seldom leave my house.

Even through all of this I am so thankful to God for His many blessings.

I hate that a good day is a 3 on the pain scale. I hate that everyone wants to compare my pain or muscle spasms to theirs and tell me to eat bananas! I hate that I never have enough energy to do make a shopping trip. I hate that look of disappointment on my husbands face when he asks how I feel today. I hate that no medicine helps more than it hurts. I hate that my house is dirty. I HATE FIBRO!!!

I HATE..that I am getting worse and that my brain doesnt work. I hate it when I hear people tell me to be POSITIVE as they dont know what else they can say. I HATE it when friends look at me and knowing that they are questioning my condition. I HATE it that I had to give up work..I HATE it that I cant plan anything. I HATE it that I cant go to the gym anymore and that I cant go for long walks. I HATE it when I go blank at the check out counter and feel so embarassed when I cant reply to a question…most of all I HATE not being able to jump out of bed and get dressed and enjoy the activities of the day! Saying all that…I AM GRATEFUL for the few activities I can do and also the love and understanding of my husband and girls 🙂

I hate that I can identify with what so many of you said. I hate not being able to make plans b/c I don’t know how I’ll feel from day to day. I hate going to sleep in pain, getting up throughout the night b/c of pain, and finally, waking up in pain. I hate that when I tell someone I’m not in a mood to talk, going out, etc. b/c I’ve been up all night in pain, that I’m told to “suck it up.”

I hate that my kids have turned into teenagers while I’ve sat in my recliner. I REALLY hate that. I hate that my daughter waited and waited for me to get better so I could pick her up again, and then suddenly she’s the same height as me and 13 years old. I hate that I can’t take her shopping. I hate that I can’t be there for my boys. I hate that my husband has to work his ass off all day, leave work early to pick up the kids from school (I can’t drive), comes home, cooks dinner, takes care of me, then finishes the remaining two to three hours of work that he has left. Every.Damn.Day. I hate that I can’t be intimate with him because EVERYTHING hurts. I hate that so bad. I hate the weight I’ve gained. I hate that I’m tethered to my meds. I hate that I cannot think, cannot speak, everything is either a “what’s it called” or a “thingy”. I used to be a smart person. I hate that I sleep until noon every day of my life. I slept until 2pm today even. I hate the cold sweats I get from the meds. I hate the aches, God knows I HATE THE ACHES. I hate that people think they know how I feel. I hate forgetting what I’m saying in the middle of my sentence on a regular basis. And wow, I apparently reallllly needed to vent! I do thank God every day for the blessings I do have though. Sigh.

I hate that I don’t sleep at night cause I wake up in constant pain, tired all day, and iritable from lack of sleep. I hate that the only time I feel good is when it’s a constant 100 degrees or above, we need the rain so bad. Which in turn makes me hurt like crazy. I hate not having a clean house, and constanly having to have my 16yr old son help me out cleaning and doing dishes. I hate that all the activitties I want to do I can no longer do. Like hiking, going for a just a walk in the neighborhood, and walk the dogs. I hate the pity, or the what’s that? With the look in return that I’m full of crap. I hate that I’ve gained so much weight and really have no energy to try to work it off. I hate when we actually go to do something I have to say I can’t stay out cause I hurt so bad I just want to go to bed.

(takes a deep breath- ouch) well thats the first hate, i HATE it when it hurts to breathe, i hate it that i can feel my blood pump through my body and my heart beat .i hate that each pump and beat is painful. i hate my feet being so sore it feels like i’m walking on hot glass shards.i hate the pain that moves all around my body. i hate the fact i have pulled muscles and trapped nerves 5 times in 3 weeks in my neck, back and ribs just from wiping my arse.i hate that my hands are too cramped and painful to type properly, to brush my hair, hold a phone or pen, hold a book up to read,i hate that it hurts to drive my car and that i have to take my kids shopping with me so that i dont have to push a trolley.i hate being hungry all the time but unable to eat cos my body says no. i hate it when i DO eat that i may as well chuck it straight down the loo as i cant keep it in.i hate it that i cant eat foods i used to ( like cereal/milk.cheese.bread ) i hate the way my eyes feel like they burning cold and my skin is sore to the touch yet sorta numb too .i hate feeling like a human scrunchie.i hate needing to pee 20 times an hour.i hate the migraines which last for days and seem to come in clusters.i hate the numbness, facial neuralgia,muscle/nerve twitches and poor balance.i hate the fibro fog and the way it affects my speach,i hate being fatigued but unable to sleep or rest, then falling asleep at the drop of a hat when i dont want to and having no energy.i HATE that i am having to go to a benefits tribunal because someone doesnt see that i am in pain and assumes because i struggle to do something and am not howling in pain, that it isnt painful. SORRY i have learnt that howling in pain doesnt make it better so (waste more energy doing that?)i hate the “officials” who assume we’re all fakers and that we can work/carry on and ignore the pain or be ” normal” because we’re on pain medication..i hate that i feel so issolated and alone and sad.i hate that i’ve lost people to suicide and always said i couldnt understand why they did it.. and although i wouldnt do it myself… i HATE the way i can now understand their desperation.. and finally i HATE the way i need to write this.sorry it was a long one.

I HATE that I can’t run like I could. I hate that a 2 mile run makes me feel exhausted like a 10-miler used to. I HATE the side effects of my celexa.

I hate everything about it. I lost my old life. I have no energy to do anything. Sleep doesn’t even help anymore! I just HATE it!!!

i hate that I am so tired, and lately so depressed. I hate the fact that I start something and have to stop because I hurt so much. I hate that just because I try to keep positive, people think there’s nothing wrong. I hate that people don’t realize how badly I feel sometimes. I hate that I forget what I am about to say at mid-sentence. I hate that I can’t lay still for more than a few seconds so I’ve taken to sleeping by myself, and not with my husband I hate that my skin feels like it’s on fire. I hate that I feel as if I am losing my mind. I hate that I am sick.

I hate that I missed my 30 year class reunion. Tiredness, achy joints n muscles wouldn’t let me leave the house. I hate I’m always drained, n when I do feel like doing something, it’s what I want to do and I don’t have the energy for others, n they think I’m being selfish. I hate that feelin, when my daughter calls n says let go out of town n I’m too tired/fatigued.

No, sleep is not refreshing…. Always tired.

I hate more than anything that the other day my 12yr old asked “mom, can I get Fibro” God I hope not.. and the days I have to say, not right now, I need to rest and dnt feel like it. I hate that I love my kids and husband so much but they feel like I never have time and energy for them…mom needs a nap is said way to much in our house… I hate that I’m so SAD…

I HATE when all of a sudden you can’t move your neck and it freezes up into the back of your head ! It’s very aggravating!!!

I HATE not having energy to do anything! i hate that my feet hurt and feel as if i have cinder blocks hanging from my abkles! i hate that people dont understand my pain! i

All I can say is you took the words right out of my mouth! I hate it, hate my body. Try to remember that God does not letting anything happen without a reason, and that Glory to Him will be given and that maybe I can help someone else. Or, at the least, understand. We are starting a support group on Thurs…

I hate hurting all the time to I hate not having any energy to.

The comment about not being able to eat caught my attenction. Have you tried gluten free? It has helped me. As a matter of fact, I went rebel and ate anything and everything I wanted last week, it sent me into an awful flare, worst than a long time. A few days of not eating it, and I am feeling a little better. I threw up everyday before stopping eating it

I hate that all but three of my friends have disappeared, even some that I thought would support me. I hate when people ask “how are you feeling today?” and I can’t think of anything to say that’s hones, because they want to hear “I’m OK”. As if I’m suddenly going to wake up and be cured… I hate that I got nothing done all weekend due to a pain flare, but I needed to do so much. I hate that I’m single and have no choice but to continue working, even with intense pain every day. I hate that my employer has threatened to fire me for being a few minutes late, when most days it’s all I can do to even get our of be. I hate sleeping with a CPAP, choking in my sleep and waking up feeling even worse.

I HATE that I don’t feel like “me” any more. Instead, I feel like a person that is 30 years older than “me” and those 30 years have not been good to “me”. I feel old and broken. I HATE that I can’t think like “me”, I can’t talk like “me”, and I can’t move like “me”. I HATE that I may never be “me” again. I REALLY HATE that I understand exactly how all of you feel! . . . And lastly, I HATE that we all have to put our thoughts into facebook because we are all the only ones that really understand each other. (((Gentle Hugs to All)))

I hate that I can not do things normal 32 year old people can! I hate have no energy to clean, exercise, play with my son, enjoy alone time with my sig other! That I had to call in this weekend because I was in pain, or at work that I can be out run by elderly people in wheel chairs! I hate that I am in constant pain, depressed and take more meds then anyone my age should! I hate that I have to spend a lot of $ on meds and doc appointments! I hate that I have to give up things I enjoy gardening, having an occasional drink, etc!! I hate it when you have to explain yourself over and over about why you never feel good or can’t do things you use to or why you move so slow! I hate that my son does not have a healthy MOM!! I hate when I can’t sleep or when you do sleep the pain wakes you up! I hate feeling isolated and alone! I hate that this disease controls every aspect of MY LIFE! I hate that people have to worry about me or constantly pick up my slack! I hate when people ask how you are?! I hate that sometimes doing the normal everyday things make me tired like taking a shower or walking up steps! I HATE THAT THERE IS NO CURE OR HOPE FOR A CURE FOR ALL OF US!!!!!

I hate that this disease has changed me as a person and stole my youth!

I hate that I can’t function like I used to be able to. I feel like something just took over my body and I cant’ do anything about it and I hate that. I hate that people do not understand my pain, my extreme fatique. I hate that after two months of working full time, I begin to get sick all the time, I fall asleep at the wheel and I start performing poorly when I actually think I am doing a great job. I hate that I can’t find a complete fix and I hate that I can’t enjoy eating what others can enjoy.

I also hate that all my “friends” are no longer around and never even call or invite me or include me in any event or outings they may be getting together. I hate the feeling of isolation, loneliness, depression and uselessness that I feel. I hate that I feel like I don’t have a purpose anymore.

I also hate that my son has to see his mom crying and is to young to understand why his mom is sad so much!

I hate all of the above constantly every single day!

I hate that I took my last Percocet today! I hate being too nauseated to eat! I hate letting myself down on my therapy goals because I’m so tired! I hate being looked at and spoken to like I’m a fraud when I need to use my disabled tag! I hate that there are days I’m too exhausted to take my medications! I hate that my insurance company feels it has the right to take me off of a medication that has helped at least some and force me to try an outdated antidepressant! And most of all, I hate that this post ever had to exist, for any of us!

i hate not being able to recall the last time i experienced a day without pain and fatigue

I hate that I have lost who is was. I hate I can’t do the things I could do before. I hate that my kids have to see me suffer. I hate I can’t do things with my kids when I want. I hate that my fiancé has to see me breaking down. I hate I can’t be the mom or fiancé I want to be. I hate that I hate so many things because I always taught my kids not to hate. I hate trying to act like I am not angry and hating all the time. I hate having to ACT happy or ACT like I am not in pain because people think you are weak. I hate that people think we are lazy! Thank you group. Hugs.

I hate that what I used to accomplish in a day or two now takes me a week or more. I hate how it has aged me. I hate how everything has to be planned in advance and even then I may not feel well enough to go. This was vocalized when my youngest was in grade school and he said “Mom spoils everything.” I hate that I will never fall in love again because who would want to be with someone who always feels like crap? I hate how it contributed to the ending of my 30yr marriage. I hate how my kids don’t care

I hate not being able to take my 2yr old to the park on my own…i hate not being able to have long days out with my children…i hate not being the way I used to be…i hate the fact even cleaning the house makes me ache so much I can hardly move…i hate the days where I cnt even get up my stairs…i hate wen im having a bad day and dnt have the energy to move so I lie on the settee and think that people think im lazy…i hate not being able to walk far…i hate not remembering wot it feels like to be pain free…i hate the fact I was a fit healthy person until my ex threw a bottle at my head…i hate that I worry how this is gonna affect me wen im a lot older…i hate healthy people who abuse there bodies and dnt know how lucky they are…i hate that some days im in to much pain for you to cuddle to…i hate that I could write loads more things about wot I hate, wen all i wanna write is how much i love waking up fresh and healthy…and most of all, i hate fibromyalgia exists and their is nothing to really help us x

I hate everything about fibromyalgia, the pain, the extreme fatique , the list can go on & on & on. I wish that I could wake up for once and feel refrehed and energenic.I wish my depression would go away. I wish that people would stop saying, well you look fine, why can’t you work. Fibro really really sucks bigtime…

I can relate to each and every one of you… I Hate not being able to sleep through the night without getting up and taking pain meds, I Hate that I can not sleep, I go to bed tired & hurting and wake up just as exhausted or more so, I Hate that I can no longer work, I Hate not being able to make plans and stick to them, I Hate not being able to spend time with my grandbabies like I want to… I Hate the feeling of fatique & not having the energy I used to, some days simple tasks seems like climbing a mountain, I hate the feelings of disappointment, worthlessness, depression, etc…. I HATE FIBRO!!!!!!!!!!!

I hate that I am in so much agony that I couldn’t enjoy my visit with my grandkids this weekend. I hate that I too have piles of clean laundry that needs attention and there are so many unfinished chores in my house because I am in so much pain or too fatigued. I hate that I need to give up today and take the demerol. I won’t say “good night” because my body apparently has other plans.

I hate fibro and all it does to a once healthy active body

I hate fibro, because I am no longer the person I was. Hugs for all of you who are suffering to.

I hate what fibro does to my partner, after her first collapse in November I felt like somebody robbed me of her like just one day I woke up and there was a stranger in my bed, after a break and a lot of hard work I am slowly getting to know the woman I love again. I hate that at 5 years old our son has to get his head around a complex medical condition and worries about Mum all the time when he should be thinking about playing and the park and just being 5… But mostly… I hate that I can’t do anything about it I hate how useless I feel every day and I hate that sometimes she looks at me and I know that she thinks I don’t understand when I’m trying my hardest too.

I hate tha I have to agree with 99% of the above, and that doctors and others just say it’s only in your head. nothing wrong with you. just get up and get going.

I hate that I have no life anymore. I hate that most of the time that I don’t see my kids. I hate that my gorgeous eldest daughter has to run my house and look after my children because I can’t. It does help that she still lives at home with me though. I hate that I’ve lost every body cos they don’t understand what I’m going through I do in a way understand how boring and depressing it must of been for them though. I hate that most days I can’t even dry and straighten my unruly hair. I hate that I spend days not being able to sleep then days when I can’t stay awake. I hate having to take pills every day just to get through to the next. I hate feeling so down and depressed. I actually hate being alive and I hate that I still can’t come to terms with the fact I don’t have a life anymore

I hate that I just at a breakdown and my husband feels helpless…I hate that my hands dont work and I cant even prepare a simple meal! I hate that every part of me hurts and all I want is for the burning feeling to stop. I hate having to vent on facebook and that how only fellow sufferers know what its like to have your independence slowly crumbling away :'(

I hate that I can’t walk, and have to use a wheelchair, and most places are wheelchair inaccessible – even if they claim they are.

i hate every symptom of fibromyalgia but what i hate worse is the medical industry that exploits it….under- mediating or over-medicating as how it suits their profit!

I hate waking up still with the pain I went to bed with, I hate not being the person I was, I just hate not being able to do anything in this Fibro state. Love and hugs to all x

I hate when people say “you’re too young to know what it’s like to have your joints ache”, etc. No one understands! I want my life back! I’ve had this since my late 20’s and it’s not fair but I have to deal with it. I hate not knowing how I’m going to feel day to day. I hate when someone accidentally pushes on one of my pressure points and I want to scream because it hurts soooo much! I hate going to bed early just so I don’t have to feel the pain in my sleep.

I hate that my house is the messiest of everyone I know! I hate that my teenage girl will never have a “partner” to help her train for athletics! I hate that loving my family through hugs actually hurts me physically!! I hate that nobody ever understands. And MOST OF ALL, I hate when people say that “they hurt too”, it’s just a sign of the times with aging and “I’m lucky I don’t have…….Whatever!!!! Whew! I feel better! Thanks!

I HATE that my loving daughter has this FIBRO…

I HATE that I am crying so much that I can’t finish reading (and ‘liking’ – want to support you all) all the comments. I HATE that I understand so well what you are all saying – except for the parenting bits (and that is another HATE – I was not able to be a mum because of Fibro). I HATE that I can’t do everything that I want to do in life, that I can’t plan ahead properly, that I often need to cancel/change plans (I was meant to go to a family party this weekend, but could not cope with the 6 hour drive each way), that I rarely get a good night’s sleep, that I mostly rely on painkillers to get through the day, that I cannot join in with my friends on their long horse rides, that I had to give up running (except for an occasional short jog), that I get confused and forget stuff all the time (I used to be a Director’s PA and super-organised), that I always get travel sick now, that it affects my wonderful hubby and so much more. Gentle hugs to everyone. Ali x

I have just been to opticians who told me the issues I am having with my sight is due to my muscle spasms and that it takes me time to focus and not my actual sight. Another bloody thing to add to the list.

Also missed out on going to London yesterday with my daughter and a friend as knew it would be too much and would end up spending rest of week in bed. They ended up seeing stars from jls, diversity and pussy cat dols as well as chance of being on tv. All cause of stupid condition. Have missed out on so many things this year including my nephews 21st birthday party. I never know til last minute whether I am gonna be well enough to go anywhere.

I hate that it took my life away from me! I hate crying so much from the pain. I hate having to rely on medication. I hate EVERYTHING that has come with this demon living inside my body. I LOVE getting it out to vent. This was a great idea! Thank you!!

I hate when people think I am lazy because I always hurt and my energy drain, I hate the ideas of living of Fibromyalgia and make me wish I never wake up and go through another day of suffering, I hate when I am sad or need nap a lot. I hate when they judge me without understanding what kind of day I going through. I hate when there is no cure for Fibromyalgia. I hate when people think they can tell me how to eat or do to cure the pain when it is not working as all, I hate when all I thinking of just ending my life because I can’t deal another day of endure pain. I hate when people think I am faking it when it so real. I hate when I cried all the time knowing I break my promising when I can’t get up and do it. I hate to feel the burn and aches. I hate taking pills knowing it will destroying my livers, I hate everything about the fibromyalgia that I had to live daily. I really HATE my life the disease that I had to carry on for the rest of my life.

I HATE the fact that I could have written any of the above, the fact that I cannot get a proper breath tonight has not stopped me sobbing madly with total understanding & empathy for you all, but, I solemnly swear now that my confusion & depression regarding this demon has turned to anger which has given me a quest for answers & I will not be silenced until I get them for us all. Stay strong in mind & we will beat this together! xx