It’s March (almost)

Suffering with a chronic condition can be extremely frustrating, making you feel lonely and misunderstood.
Developing and nurturing a support system can make some of these horrible ‘side effects’ just that little bit better.

BUT do you know the best places to locate these oh-so-valuable resources? That’s what the latest issue of LIVING WELL with FIBROMYALGIA is about… and it will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking here.

March Cover

Pay It Forward

payFor Christmas (and any other time of the year), how about we all try to do, at least, one nice thing for another person?

Remember the movie, Pay it Forward (my favourite movie of all time!)?

Wouldn’t it be great if the world was a nicer place?

FCK

This piece is from Jess at Discovering Me, a member of FCK: a directory of blogs that help spread knowledge and awareness of Fibromyalgia.

This is INITIATIVE!!! 

In its simplest form it is thinking of and planning something, you can do in the form of a physical job or task and following this through to completion.

I’m not talking about grand plans that need grand rewards. There should never need to be any kind of self boost from helping someone. This isn’t something you do and then plaster all over Facebook to your friends, or blog about.

Simple examples of Initiative:

For the husband

  1. Husband sitting watching favourite T.V. show can just sit there OR he could use some initiative and fold the washing that Wife has washed/pegged/unpegged/brought in off line/left in basket hoping said Husband may tonight have found a spare can of initiative in refrigerator not another beer can.
  2. Husband has told Wife it is her night off dinner duties. Husband has no idea how to cook so you could either ask wife how to do everything – starting with what shall we have for dinner… OR you could use some initiative either plan a meal from a recipe book, online, call your Mum/sister/Mother-in-Law/best friend. But do not tell Wife she has night off and then have Wife wishing she had just bloody well done it herself as it was easier. All else failing order takeout.
  3. Wife gets told its her day to have a sleep in. Husband can tell she is tired. Husband can tell children to quietly watch tv and get their own breakfast while he stays in bed too on his computer/phone/tablet OR he could use some initiative and take the children to a special breakfast outing somewhere followed by a morning out with Daddy {while Mummy rests in peace and quiet}
  4. Husband offers suggests Wife has an early night as things are getting on top of her lately. Muchly appreciating the offer exhausted Wife goes to bed, then Husband sits and watches T.V  OR you could use some initiative and do the dishes, pick up the dirty washing, fold and put away the clean washing etc etc. There is nothing worse than going to bed for an early night to get up the next morning and find that nothing got done and you are a day behind on chores.

For the new parent 

  1. Make a few home cooked meals/baking {that are suitable for freezing} and drop them off in the first few days/weeks after the birth of their new bundle. This is the mother load initiative. Dinner time is called the witching hour in households with children for a reason. Make sure they are in containers that can stack neatly in the freezer and can be reheated {the supermarket and dollar stores have these}. Write on the containers whats in them – it saves trying to guess what tasty treats you may be getting and find tonight we are eating lammingtons!
    A really organised friend may even be able to get a few friends on the go with this to have a roster system going where hot meals are being delivered at tea time. I prefer the reheat option to gives you the control over what time you eat and if you are having a super organised day and managed to do dinner yourself you still have back ups in the freezer. If you are going to go with a roster of freezables make sure the organiser has spied out the available freezer space – usually the Dads are the go to option for this they never say no to food where the Mums may feel bad or that they aren’t doing enough as a mother blah blah. This is help/gift/initiative not judgement
  2. When dropping off presents – unless you have arranged a time or can see/hear movement – don’t go knocking and expecting to be let in. Leave the present on the doorstep with a lovely note/card and arrange a time that is suitable with the new parents to stop by again. Ahem I hear initiative.
  3. Finally getting to see the baby – when you arrive baby is asleep and Mum looks exhausted. Hello initiativeeither let you friend know you are happy she/he/they are still alive and shoo them off to bed while you leave them to rest and you will catch up soon. OR offer if there is anything you can do – hang out some washing, put a load on, fold some, some ironing, take an older child with you some they can rest, do some dishes, vacuum. Just use some bloody initiative.
  4. If by chance you actually make it in the door for a visit and everyone is alive, well and rested initiativedoes not go out the window. This is where YOU get up and make the cuppa and while you are there you also might do some washing up or stack the dishwasher. You may also realise the fridge is almost bare due to new baby and no time to shop – so make a mental note to either do a small online shop and have it delivered or go to the grocery store,  fill a box and drop it off of some essentials, easy snacks and a few treats for Mum (milk, bread, butter/marg, yoghurts, fruit, cold meats, nuts, some chocolate, snack bars etc etc).
  5. Don’t stay too long Babies get tired, Mums/Dads are exhausted. Unless you are Mother/Father/Brother/Sister/ Aunt/Uncle and you are staying at the house to HELP (not be a pain in the ass and be waited upon by your already exhausted children/siblings). Use initiative and know when its time to go – or when you need to stay longer. Ask if you should leave and know when they are being too polite to tell you to feck off already!
  6. DONT give advice unless it is asked for. Use some freaken’ initiative babies are all different and so are the parents. What works for you doesn’t work for everyone. Be there to listen and if you are asked for advice give it but always add this is what worked for me. That way they don’t feel like they left some manual behind that everyone else got or feel judged that you could do it when they so clearly are having a tough time. Tell them about a struggle you had to let them see we all fail at this and somehow it all turns out okay (ish).
In public 
  1. Old lady with shopping walking towards door struggling with bags OR you could practice some initiativeand hold open the door, offer to carry a bag and help her to her car. Even better! get the kids to help! {Teach your kids initiative now people before it’s too late}
  2. At the park little boy on trying to get on swing. Mum juggling newborn saying I will feed you once Johnny has his swing. You could think poor child, welcome to the real world, you are going to be ignored a lot more than just this now! OR you could say to the Mum is it ok if I help him up and give him a push? I remember whats it’s like to have my hands full! Use some initiative Mother will be grateful son got swing he has harped on about for past two weeks and she is able to feed baby who is no longer wailing like a fire truck.
  3. You see a mobile phone sitting outside the grocery store – clearly forgotten – no one in sight. You could think. Poor buggers probably wont be there by the time they come back OR you could hand it in at the grocery store service desk using your friend Mr. initiative.
  4. You are at your favourite family restaurant – The Golden Arches. After you have enjoyed your meal knowing the children will be eternally grateful {until the next time you have a fight which will be in approximately 1.5 minutes when you tell them you are not playing on the playground} you look around a see all the tables lined with trays and rubbish. You could get up and walk away thinking the lobby girl is going to have fun once she gets out here OR you could use some of that awesome initiative to go and put your trash in the bin and the tray on top. How hard was that? Would you expect your children to leave your table looking like that? So why is it okay just because you are out??

Initiative works best when you also have common sense and know your Husband/ Wife/Parents/Children/ Family/Friends well. If you know they are lacking support but there is no way you can help due to time and space try take the load off by sending a gift in the mail to let them know you are thinking of them. You can even do most of it online these days where you don’t even have to go to the post office.

If it is a family member rally the family {there may be a group of close friends instead} to share the load and see what you can all do between you. Everyone has different talents and abilities and between a group of people there should be a few ideas to help out.

Just don’t do nothing! ACTIONS SPEAK LOUDER THAN WORDS. Words are great and touching when we need some uplifting but action it by putting them in a really nice card and posting it – to say hey! I thought of you enough to pick this card especially for you, and then said lovely things too.

I think the world could be a better place if we could all learn to use a little initiative.

Me, too – Thanks Jess!

How to Understand Someone With Chronic Pain

In hopeful anticipation of informing YOU, a person who wants to understand: these are some things that can help YOU to understand, and help, people who suffer from often debilitating, chronic pain:

Remember: chronic pain sufferers (CPS) have already attempted numerous alternative therapies and know what therapies have worked or not worked for them.

1. Remember that being sick does not mean that the sufferer is no longer a human being.

1A CPS may spend the majority of their day in considerable pain. If YOU visit or live with a CPS, the CPS may be unable to enjoy the things they used to enjoy. The CPS remains aware, and desires to do what they used to perform. The CPS feels as if they are stuck inside a body over which they have little or no control. They still want to enjoy work, family, friends and leisure activities; however, pain keeps that enjoyment out of reach.

2. Learn the code.

2A CPS will often speak differently from people free of constant pain. Do not assume the CPS is not experiencing pain when they say that they are fine. The CPS attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when YOU experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It’s hard to find the words for that sort of pain.

3. Recognize the difference between “happiness” and “healthy”.

3Remember the last time YOU had the flu, YOU probably felt miserable. A CPS has experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.

Respect that the person who is in pain is trying their best. When the CPS says they are in pain – they are! They are merely coping; sounding happy and trying to look normal.

3aLook for signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.

4. Listen.

4The previous two steps made it clear that a CPS can speak in code or make light of their pain than is the reality. The next best thing that YOU can do is to listen to them properly, and to make it clear that YOU both want to hear what they have to say and that YOU really have heard it. Use YOUr listening skills to decode what they’re hiding or minimizing.

5. Understand and respect the CPS’s physical limitations.

Being able to stand up* for ten minutes doesn’t necessarily mean that the CPS can stand up for twenty minutes, or an hour, or give YOU a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

* Insert “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, to this step, as the curtailment on a sufferer’s ability to be responsive applies to everything that you’d expect a person in good health to be able to do. That’s what chronic pain does to its sufferers.

6. Leave your “pep talk” mode for your kids and your gym buddies.

6Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the CPS. As already noted, it’s quite possible (and for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that YOU don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!” If YOU want them to do something, then ask if they can and respect their answer.

Get over the need to give platitudes about the value of exercising and fresh air. For a CPS, “getting out and doing things” does not make the pain vanish and can often exacerbate the problems. Bear in mind that YOU don’t know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to “get their mind off of it”, may frustrate them to tears, and is not correct advice, especially if YOU’re not medically trained and haven’t got a clue. If they were capable of doing some things any or all of the time, they would.

Remember that CPS are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, “you just need to push yourself more, try harder”. Obviously, chronic pain can affect the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. YOU can’t always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn’t YOU get depressed and down if YOU were hurting constantly for months or years?), but it is not created by depression.

7. Never use throwaway lines.

7Assuming YOU know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “you’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough”, etc., are lines that might make YOU feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that YOU should throw lifelines rather than throwaway lines.

8. Check your own patience.

If YOU’re impatient and want them to “just get on with it”, YOU risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.

A CPS may need to cancel a previous commitment at the last-minute. If this happens, please do not take it personally. If YOU are able, please try to always remember how very lucky YOU are, to be physically able to do all of the things that YOU can do.

Be very understanding if the CPS says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they have no choice but to do it right now, and it can’t be put off or forgotten just because they happen to be somewhere, or they’re right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

9. Be sensitive when suggesting medicines or alternative treatments.

9Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.

On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended “helpful questions” that would help the CPS to open up and really talk. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how YOU bring it up.

10. Don’t be put off if the CPS seems touchy.

If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless YOU have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful.

11The CPS depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. YOU can be their link to the “normalcy” of life. YOU can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your career responsibilities. If YOU are living with a CPS or supporting such a person on a regular basis, YOU need to maintain balance in your life. If YOU don’t take care of your own needs, health, and work-life balance, being around the CPS can bring YOU down even though YOU’re probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as YOU’re able but also care for YOURSELF.

Fibromyalgia Hurts Your Love Life

Forget the roses and the bottle of wine. When it comes to romance, Fibro is a buzz kill!

broken_heart1A new survey of FM patients has found that well over half believe that chronic pain has significantly harmed their romantic relationships.

The survey of 1,228 adults in the U.S. with FM found that pain was having a widespread impact on their social life, home life, work and school attendance, and exercise habits.

Pain also took a big toll on romance. Nearly 70 percent said FM pain has affected their physical intimacy with a partner or spouse. And over half (55%) said FM had negatively impacted their romantic relationships in some way.

“Fibromyalgia has long been misunderstood, as it is a complicated disease with many different symptoms, and as a patient, I have understood the importance of differentiating between the symptoms and recognizing the impact that just one symptom – like pain – can have on your life,” said Jan Chambers, president of the National FM & Chronic Pain Association (NFMCPA).

“This survey is important for the fibromyalgia community as it underscores the need for more effective dialogue between patients and their HCPs (health care practitioners), specifically focusing on pain management, including lifestyle changes that can make a difference.”

The survey, called Functioning with Fibro, was funded by Pfizer Inc., and was conducted in collaboration with NFMCPA and the American Association of Nurse Practitioners. The survey was conducted August 9 – 23, 2013, using an email invitation and an online survey.

On average, the survey found that FM patients had more bad days than good, with the number of “flare up” days exceeding the good ones in a typical week. Daily activities most affected by FM were sleep (71%), exercise (70%) and the ability to do household chores (60%).

FM patients who work missed an average of 3 weeks of work annually (versus only 3 sick days for the average American). They were late for work an additional nine days. About a third said their professional relationships were adversely affected by FM.

Other key findings:

  • 85% said pain was the #1 symptom impacting their daily life.
  • 85% said they had missed important events in their life, including holidays, birthdays, vacations, and social engagements.
  • 72% say they are hesitant to plan social activities out of fear they’ll have to cancel.
  • 54% say it’s had a negative impact on their friendships.
  • 48% say it’s had a negative impact on their family life.

FM patients were very pro-active about their treatment. Nearly half said they were currently discussing with their health care practitioner ways to improve day-to-day life. And nearly all (97%) had done something to improve their ability to live with pain, including minimizing stressful situations and setting more limits.

From NationalPainReport.com

Looking to improve your love life? Check out Fibromyalgia, Fatigue and Sex

The Ten Basic Rules to Dating with #Chronic Illness

Re-blogged from letsfeelbetter.com

The Ten Basic Rules to Dating with Chronic Illness

1. DO: Use Technology to Bypass First Date Anxiety 

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

23/F/Bleeding From My Eyeballs/ Boca Raton, FL.

My sister uses OkCupid so that men know she’s a 5’2 nudist with a penchant for folk songs. If men who are total assholes about nudism and folk songs see her profile proclaiming this both so boldly and so clearly: they don’t message her. Or they message her things like “PUT ON SOME CLOTHES, YOU HOMELESS HEATHEN” or “CAT STEVENS CAN SUCK IT, YOU HIPPIE.”

You may want to try a similar strategy. Whether you’re a profile on a dating site, or you’re chatting up a guy/girl on Facebook–make sure to drop the bomb before the first date. If they don’t want to go out with you after learning you have Crohn’s, Lupus, whatever–then that’s that. What’s my momma’s favorite word? NEXT!

Why is it good to break the news online or even over the phone? You have to be understanding of people when it comes to your chronic disease. Understand that their first reaction probably will be “what the fuck?” So allow them the courtesy of saying it (to themselves) in the privacy of their own bedroom while staring at their laptop. Give them a minute or two to process. Feel comforted in the fact that you can’t see their hands flittering over the keyboard trying to come up with a supportive/appropriate/charming response. And let them have the ability to untangle this information before you sit down to your first date. Hopefully, by this time they’ll have let it settle in their mind a bit and will be able to ask you some appropriate questions about how your disease affects your life.

2. DON’T: Be a Victim

“And then the doctor said I’d never be able to eat ice cream again!”

“And then the doctor said I’d never be able to eat ice cream again!”

The only thing more awkward than meeting your ex on a blind date-is having someone tell you something on a first date like “I have ass cancer,” and then having them STARE at you while a single, silent tear slips down their cheek.

Don’t be that girl. (or guy.)

People are going to follow your lead when it comes to the state of your disease. You’re frustrated about it. They’re frustrated about it. You’re sad about it–they’re sad about it. You’re cool about it? They’ll be cool about it. People can sense your uneasiness about your disease. If you haven’t come to terms with it yet and are still in a phase of mourning your old life–you probably aren’t ready to date anyway.You’ve got to love yourself–with or without the disease, if you’re going to expect someone new in your life to do the same.

Lead by example, and don’t walk around with a chip on your shoulder that you leave in plain view. I’m not saying you have to hug your fibromyalgia lovingly in your arms every night, but you at least have to be able to get through a flare in public without openly weeping.

3. DO: Highlight Your Best Assets

p3

Even in your Grand-dad’s clothes.

You’re still going to be just about as self-conscious as any other person is on a first date, so remember to play up your best assets. Maybe you’ve packed on a few prednisone pounds–it’s a great time to pull out the tight skirts to show that you no longer have a white-girl butt. Maybe you’ve got circles under your eyes so black you look like you just came from a football game–time to show your date just how sexy you can look in sunglasses.

4. DON’T: TMI

p4

K. Thnx.

The details of your sensitive stomach. The current color of your snot. Your barely-healed laparoscopy scars. Save it for the honeymoon, kids.

5. DON’T: Lay Down the Law

p5

Yes, you need someone who won’t play games. You need someone who is going to be there for you ALL the time. You need someone reliable. You need someone understanding. You need, you need, you need–but slamming your fist down on the table every time you decree a new amendment on how you will be treated as a partner is not going to win you any suitors.

So take a step back. Remember that relationships are a two way street and you’ve got be willing to put out just as much as you need to take in. So why not start off this date making a mental list of how you’re going to improve their life? Partners of those with chronic illnesses are probably the closest things to super heroes. They put up with it all and know they won’t ever get as much PHYSICAL effort in return. But that doesn’t mean you can’t put in effort elsewhere. There are millions of things you can do for your partner–from helping them have better relationships with their family and friends, to teaching them about having career goals or handling money and investing, to being a solid parenting partner or emotional caregiver. You’re not the only one with problems, so start looking for places where you can apply yourself as the solution.

6. DON’T: Be a Hero

p6

It’s just a little blood…from my eyeballs. I’m good, let’s eat.

Rock climbing? Extreme roller coaster riding? Hot dog eating contests? These might not be the best first date activities for you if you have a chronic illness. You will probably fuck yourself up, big time. You will probably end the night in excruciating pain. You will probably end up puking in the back seat of his car.

Don’t pretend like you’re cool, and then turn around and dry heave into your handbag (I have mastered this by the way.) Don’t agree to go to a rock concert when you have a migraine and don’t agree to eat hibachi when you’re on an all-liquid diet. No good will come of this. Better to out yourself and your condition early and avoid the consequences. You can’t pretend forever–and Jesus, why would you want to???

7. DO: Laugh About It

p7

Because really–it is kind of funny. I mean whoever heard of someone sneaking in a stash of immodium in their bra to the prom? There are so many instances of hilarity when it comes to chronic illness–and if you don’t believe me, this is clearly the first post on this blog that you’ve read!

Take it from Numero Uno Klutz, Jennifer Laurence–fall on your ass and cry about it, you’ll lose the Oscar. Fall on your ass and laugh about it–you’ll be America’s Sweet Heart.

8. DON’T: Be Afraid of Rejection

p8

Because if you think you won’t need to be brave after the first date: you’re wrong. Relationships require all kinds of bravery. From braving that first kiss to braving the first argument. So be brave and remember that you (hopefully) don’t live in Antartica where there are only five men and you have to share them with all the other women in the tribe. If someone doesn’t want to be with you, there will be someone else. And better to be happy, searching for the right one–than miserable and feeling worse about yourself with the wrong one.

9. DO: Learn to Adapt and Be Okay With It

p9

Are you going to bail sometimes? Yes. Will you spend three hours on your hair then realize you need a nap? Probably. Is the world going to end? No. Sometimes you’ll want to do something with your significant other and it just won’t work out because your body is fighting back. Sure, the first few times it’s okay to be frustrated–embarrassed even, to fumble over your apologies and stress out that they’ll be upset.

As R.J always says, “We’ll adapt.” Plans change. And even though on the surface it might mess with your emotions and make for a less-than-great day–it doesn’t have to make for a less-than-great relationships. Life happens. You’re still allowed to love and be loved.

10. DON’T: Forget That You Can Be Loved

p10

Baby, it’s you–me, the beta blockers, the afternoon naps and ALL OF THE FLARES!

On the forum the other day, someone asked: “Who wants to be with a person that is chronically ill?” I stopped, thought and responded something that I still stand by:

You’re not just a person who is chronically ill. You are a person, and you happen to also be chronically ill. Don’t let your disease define your personality. You are so much more than an illness, and when you stop thinking of yourself in that box–others will too. Your illness will limit a lot of things in your life–but it doesn’t make you any less able to be loved. Not by a long shot.

 

Fibromyalgia – it IS life threatening!

For those who have heard about, but didn’t get to see, Dr Oz’s show about Fibromyalgia… dr oz

It is a four part video. Here are the video links:

O Romeo, Romeo! Wherefore Art Thou Romeo?

I’ve written about my search for love and/or companionship quite a bit. Sadly, I am still alone.

Today I received my blog updates from all the blogs I follow and read one that many of us think about a lot:

Accredited MemberConquering Fibromyalgia with Love

From The Invisible F, an accredited member of FCK – THE blog directory for people about & with Fibromyalgia
 Holding hands by Robert FlakeLife with fibromyalgia can be inundated with many things, among them fears and anxieties over the future.

It’s not a progressive condition doctors say, but living on a day-to-day basis can be darn tough. Life, I’d argue, is hardly ‘normal’, and by that I mean how a typically healthy person would live.

I know it’s not just for people who live with FM but also for others who live with other chronic illnesses.

One particular worry keeps resurfacing and I know many of you will be able to relate.

I’ve found myself on the wrong side of 25 (Try being 42, Miss F!), still single, full of love and lots to give, but I sometimes worry about finding that guy who will love me for me despite fibromyalgia (God knows I’m picky too!).

You know? The guy who will see who I am, what I am and all I offer behind that annoying f-word.

Patients often worry about meeting someone and explaining their health situation. It is difficult, knowing when to bring it up because you don’t want someone to see fibromyalgia, before they see YOU.

You know I always say, we are not fibromyalgia and fibromyalgia is not us. Don’t become it.

As more and more of my friends find love,get engaged, and married I think about it a little more.

Whoever my Prince Charming is, will he have the heart enough to love me despite the odds I face with this invisible f?

True love conquers all.  But can we really find it?

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Social Isolation…or Hibernation?

hibernationI’m hibernating…yes, it’s Winter in Australia. I don’t want to leave the house (not even to step outside to get the mail) and I just want to sit quietly, alone, on my couch.

Avoiding social contact is a common pattern you might notice when falling into depression. Some people skip activities they normally enjoy and isolate themselves from the world. Others turn to alcohol or junk food to mask their pain and unhappiness. I do both.

I’m doing it all at the moment…BUT I don’t feel depressed (I think!) I just want to stop for a little bit – I don’t want to fight at the moment, I don’t want to search for answers at the moment.

So, maybe I am depressed? I just can’t tell anymore.

Depression traps vary from person to person, but what they have in common is that they can serve to worsen your mood:

Trap #1: Social Withdrawal

isolationSocial withdrawal is the most common tell-tale sign of depression.

“When we’re clinically depressed, there’s a very strong urge to pull away from others and to shut down,” says Stephen Ilardi, PhD, author of books including The Depression Cure and associate professor of psychology at the University of Kansas. “It turns out to be the exact opposite of what we need.”

“In depression, social isolation typically serves to worsen the illness and how we feel,” Ilardi says. “Social withdrawal amplifies the brain’s stress response. Social contact helps put the brakes on it.”

The Fix: Gradually counter-act social withdrawal by reaching out to your friends and family. Make a list of the people in your life you want to reconnect with and start by scheduling an activity.

Trap #2: Rumination

A major component of depression is rumination, which involves dwelling and brooding about themes like loss and failure that cause you to feel worse about yourself.

Rumination is a toxic process that leads to negative self-talk such as, “It’s my own fault. Who would ever want me a friend?”

“There’s a saying, ‘When you’re in your own mind, you’re in enemy territory,'” says Mark Goulston, MD, psychiatrist and author of Get Out of Your Own Way. “You leave yourself open to those thoughts and the danger is believing them.”

“When people are clinically depressed, they will typically spend a lot of time and energy rehearsing negative thoughts, often for long stretches of time,” Ilardi says.

The Fix: Redirect your attention to a more absorbing activity, like a social engagement or reading a book.

Trap #3: Self-Medicating With Alcohol

cocktailsTurning to alcohol or drugs to escape your woes is a pattern that can accompany depression, and it usually causes your depression to get worse.

Alcohol can sometimes relieve a little anxiety, especially social anxiety, but it has a depressing effect on the central nervous system, Goulston says. Plus, it can screw up your sleep.

“It’s like a lot of things that we do to cope with feeling bad,” he says. “They often make us feel better momentary, but in the long run, they hurt us.”

The Fix: Talk to your doctor if you notice that your drinking habits are making you feel worse. Alcohol can interfere with antidepressants and anxiety medications.

Trap #4: Skipping Exercise

If you’re the type of person who likes to go the gym regularly, dropping a series of workouts could signal that something’s amiss in your life. The same goes for passing on activities – such as swimming, yoga, or hydrotherapy – that you once enjoyed.

When you’re depressed, it’s unlikely that you’ll keep up with a regular exercise program, even though that may be just what the doctor ordered.

Exercise can be enormously therapeutic and beneficial, Ilardi says. Exercise has a powerful antidepressant effect because it boosts levels of serotonin and dopamine, two brain chemicals that often ebb when you’re depressed.

“It’s a paradoxical situation,” Ilardi says. “Your body is capable of physical activity. The problem is your brain is not capable of initiating and getting you to do it.”

The Fix: Ilardi recommends finding someone you can trust to help you initiate exercise — a personal trainer, coach, or even a loved one. “It has to be someone who gets it, who is not going to nag you, but actually give you that prompting and encouragement and accountability,” Ilardi says.

Trap #5: Seeking Sugar Highs

When you’re feeling down, you may find yourself craving sweets or junk food high in carbs and sugar.

Sugar does have mild mood-elevating properties, says Ilardi, but it’s only temporary. Within two hours, blood glucose levels crash, which has a mood-depressing effect.

The Fix: Avoid sugar highs and the inevitable post-sugar crash. It’s always wise to eat healthfully, but now more than ever, your mood can’t afford to take the hit.

Trap #6: Negative Thinking

NTWhen you’re depressed, you’re prone to negative thinking and talking yourself out of trying new things.

You might say to yourself, “Well, even if I did A, B, and C, it probably wouldn’t make me feel any better and it would be a real hassle, so why bother trying at all?”

“That’s a huge trap,” says Goulston. “If you race ahead and anticipate a negative result, which then causes you to stop trying at all, that is something that will rapidly accelerate your depression and deepen it.”

The Fix: Don’t get too attached to grim expectations. “You have more control over doing and not doing, than you have over what the result of actions will be,” Goulston says. “But there is a much greater chance that if you do, then those results will be positive.”

 

♩♫ Lyric(a) Writing is an Interesting Process ♫♩

So Week 3 started today…my body aches just a little more each day, the fog is not lifting (which I really thought it would), and my face hurts beyond words.

doses

It doesn’t help that I had to go to the dentist for a Crown preparation so last night was spent with some frozen vegetables attached to my cheek.

And I’ve hit exhaustion – I think I have over-loaded myself with the Thunderclap campaigning (nagging), blogging every day, reminding contributors for the next issue of LIVING WELL with FIBROMYALGIA, tweeting, my shop and my FB page – it’ll all quiet down after May 12th but right now, I keep getting anxious that I’ve forgotten something to do. spireI’m also trying to get ‘them’ to light a spire (that we have in Melbourne) in PURPLE for May 12th (looking forward to a night-time picnic with Thais (did I tell you she’s back?) under the spire – anyone else coming? You can help by emailing the appropriate people)

I’m also trying for Sydney Harbour Bridge and the Opera House but I think I’ve left that one too late! (If you want to help with this one: tweet to @VividLive  Niagara Falls will B PURPLE from 10:15-10:30PM EST on May 12 for #Fibromyalgia Awareness: can we light up the Bridge & Opera House?

sydney opera house Sydney_Harbour_Bridge01

So I haven’t had a chance to FEEL anything. I just want to rest BUT I don’t feel I can as this is the lead-up to Awareness Day (I can rest afterwards, right?).

I try not to nap during the day (no matter how bad it gets) but today, I fell asleep for 4 hours.

My body just wants to stop – but, as you can see, I have no idea if it’s medication related or just life!

The Pursuit of Happyness

Contrary to popular belief, happiness doesn’t come from fame, fortune, or money. (We would still have FM if we were rich!) Rather, it comes from within. Happy people are happy because they make themselves happy. They maintain a positive outlook on life and remain at peace with themselves.

The question is: how do they do that?

It’s quite simple. Happy people have good habits that enhance their lives. They do things differently. Ask any happy person, and they will tell you that they …

1. Don’t hold grudges.

Easier said than done, right? Happy people understand that it’s better to forgive and forget than to let their negative feelings crowd out their positive feelings. Holding a grudge has a lot of detrimental effects on your wellbeing, including increased depression, anxiety, and stress – something we definitely do not need more of! Why let anyone who has wronged you have power over you? If you let go of all your grudges, you’ll gain a clear conscience and enough energy to enjoy the good things in life.

2. Treat everyone with kindness.

Did you know that it has been scientifically proven that being kind makes you happier? Every time you perform a selfless act, your brain produces serotonin, a hormone that most of us seem to need more of. Not only that, but treating people with love, dignity, and respect also allows you to build stronger relationships.

3. See problems as challenges.

The word “problem” is never part of a happy person’s vocabulary. A problem is viewed as a drawback, a struggle, or an unstable situation while a challenge is viewed as something positive like an opportunity, a task, or a dare. Whenever you face an obstacle, try looking at it as a challenge. Yes, we have a lot of challenges in our lives – but together we can meet them.

4. Express gratitude for what they already have.

There’s a popular saying that goes something like this: “The happiest people don’t have the best of everything; they just make the best of everything they have.” You will have a deeper sense of contentment if you count your blessings instead of yearning for what you don’t have.

5. Dream big.

People who get into the habit of dreaming big are more likely to accomplish their goals than those who don’t. If you dare to dream big, your mind will put itself in a focused and positive state.

6. Don’t sweat the small stuff.

Happy people ask themselves, “Will this problem matter a year from now?” They understand that life’s too short to get worked up over trivial situations. Letting things roll off your back will definitely put you at ease to enjoy the more important things in life.

7. Speak well of others.

Being nice feels better than being mean. Saying nice things about other people encourages you to think positive, non-judgmental thoughts.

8. Never make excuses.

Benjamin Franklin once said, “He that is good for making excuses is seldom good for anything else.” Happy people don’t make excuses or blame others for their own failures in life. Instead, they own up to their mistakes and, by doing so, they learn and proactively try to change for the better.

9. Get absorbed into the present.

Happy people don’t dwell on the past or worry about the future. They savour the present. They let themselves get immersed in whatever they’re doing at the moment. Stop and smell the (purple) roses.

10. Avoid social comparison.

Everyone works at his own pace, so why compare yourself to others? My father used to quote Desiderata* to me: If you compare yourself with others, you may become vain and bitter…If you think you’re better than someone else, you gain an unhealthy sense of superiority. If you think someone else is better than you, you end up feeling bad about yourself. You’ll be happier if you focus on your own progress and praise others on theirs.

11. Choose friends wisely.

Misery loves company. That’s why it’s important to surround yourself with optimistic people who will encourage you to achieve your goals. The more positive energy you have around you, the better you will feel about yourself.

12. Never seek approval from others.

Happy people don’t care what others think of them. They follow their own hearts without letting naysayers discourage them. They understand that it is impossible to please everyone. Listen to what people have to say, but never seek anyone’s approval but your own.

13. Take the time to listen.

Talk less; listen more. Listening keeps your mind open to others’ wisdoms and outlooks on the world. The more intensely you listen, the quieter your mind gets, and the more content you feel.

14. Nurture social relationships.

A lonely person is a miserable person. Happy people understand how important it is to have strong, healthy relationships. Yes, it can be harder for us than others; but, try to take the time to see and talk to your family, friends, or significant other.

15. Meditate.

Meditating silences your mind and helps you find inner peace. You don’t have to be a zen master to pull it off. Happy people know how to silence their minds anywhere and anytime they need to calm their nerves.

16. Eat well.

Junk food makes you sluggish, and it’s difficult to be happy when you’re in that kind of state. Everything you eat directly affects your body’s ability to produce hormones, which will dictate your moods, energy, and mental focus. Be sure to eat foods that will keep your mind and body in good shape.

17. Exercise.

Studies have shown that exercise raises happiness levels just as much as Zoloft does. So just think how good you will feel if you’re taking your anti-depressants AND exercising! Exercising also boosts your self-esteem and gives you a higher sense of self-accomplishment.

18. Tell the truth.

Lying stresses you out, corrodes your self-esteem, and makes you unlikeable. The truth will set you free. Being honest improves your mental health and builds others’ trust in you. Always be truthful, and never apologize for it.

19. Establish personal control.

Happy people have the ability to choose their own destinies. They don’t let others tell them how they should live their lives. Being in complete control of one’s own life brings positive feelings and a great sense of self-worth. Be your own advocate. Figure out what really works for YOU. Learn how to manage YOUR own FM. There are on-line tools (such as FibroTrack) that can help you work out a structured plan and let you regain control!

20. Accept what cannot be changed.

Once you accept the fact that life is not fair, you’ll be more at peace with yourself. Instead of obsessing over how unfair life is, just focus on what you can control and change it for the better.

 

Desiderata

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labors and aspirations,
in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.

Max Ehrmann, Desiderata, Copyright 1952.