Daily Archives: May 5, 2012

Chronic Do’s and Don’t's

Fibromyalgia is a chronic condition. A chronic condition is a medical condition that will last a long time – perhaps forever. Some chronic conditions get worse over time, some may improve with treatment, and some may remain dormant until an acute flare-up.

The common denominator with all chronic conditions (not just FM): those who are diagnosed with them tend to feel isolated: mentally and physically. It’s a huge blow to learn you will forever have an incurable syndrome that may affect mobility, lifestyle and independence.

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.

Hands up if you never tell people how you really feel – then how are they supposed to know? Hands up if you never let anyone see you when you are having a flare – then how will they know what it’s like? Now, I’m not just blaming us – our friends and family (those that matter) need to make some effort, too.

Tips for You (“the sufferer”):

Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.

Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.

Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.

Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.

Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.

Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

There will be people who will not understand, and may not believe you. Those people may be people you care about. There may come a point where you simply have to accept that you can never talk about your condition with that person. It will be okay, even though it sucks. Some people simply cannot deal with a chronic illness. And can we blame them? Wouldn’t you walk away from your own chronic illness, if only you could?

Tips for Your Family and Friends (“the Family and Friends”):

Be honest – all I want to know is that you are here and that you care about me.

Be there for me in any way you can.

Come to support group meetings with me. Family and friends are always welcome, and that’s the best place to ask questions you’re nervous about asking.

Keeping it light and making jokes is okay. I’m not as fragile as I sometimes seem. It’s all about the timing and the presentation. Laughter is healthy.

Let me know that I can always talk to you – even if it’s just a vent session.

Always listen when I am frustrated – chronic illnesses are VERY frustrating.

Be there if I need help, but also encourage me when I want to do it myself.

Remind me, every now and then, that I am coping well.

Treat me like a whole person – despite any limitations. I want to feel in control and capable, not as if I have SICK PERSON tattooed across my forehead.

Learn about my illness. Ask me for more information. Just because you read about FM online doesn’t mean you know how it affects me.

Remind me that you are thinking about me – send a card, an email, a text, a phone call (flowers and presents are good, too!)

Offer specific forms of help – you might be able to pick up something from the supermarket for me, when you’re there.

Offer to help research, if I want your help.

Volunteer to watch my children. Take the kids out for ice cream or to a movie to give me some peace or during doctors’ appointments. It’s often hard to find babysitters, and taking kids to an important appointment isn’t always an option.

Offer to drive me to places where I may need help – the doctor’s office, the supermarket, other errands.

Offer to take me to the doctor and take notes for them.

Encourage me to continue trying new things. When treatments don’t work, I get discouraged. Stay by my side, remind me that you’ll be there when I am ready to try something new. (That tells me that I have a reason to keep trying.) Just keep it generic, so I don’t feel like you’re being a know-it-all.

Advocate for me.

DO NOT:

Don’t tell me how I “should” feel – Unless you have my illness, you do not know.

Don’t presume you know what’s wrong with me.

Don’t compare your (xyz) to my (abc). That’s like comparing apples to elephants.

Don’t discuss worst-case-scenarios unless I bring it up first.

Don’t suggest drugs or treatments someone you know takes. I am going through a treatment plan with my doctor – let the doctor take care of the medical advice.

Don’t criticise me for whining on a rough day.

Don’t offer the latest medical advice you heard about on Dr Oz. In fact, don’t give me medical advice at ALL, unless I have asked for you to help research the illness.

Don’t downplay or belittle my condition in any way. I am fighting a battle – don’t lose sight of that.

Don’t assume I cope in the same ways that you do. Let me cope in my own way. Don’t tell me that I am coping the wrong way.

Don’t say, “God will heal you,” it may make me think that you don’t understand what I am going through.

Don’t bring up each “cure” that you’ve heard about. Sometimes I just need a break!

Illness isn’t just a matter of attitude. Don’t say things like “when are you going to get out of bed?”

Be sensitive to my limitations. I know my limitations, which may change from day-to-day. Things I could do yesterday may not be the same as what I can do today. Don’t question that.

Never insinuate that I am”faking it.” People with chronic illness generally downplay the severity themselves, but to hear someone imply that the illness is “made-up” is a special breed of hurt.

Don’t ever ask “How are you?” or “How are you feeling?” because the answer never changes and I don’t want to talk about it. Instead ask, “How is your day going?” or “Is there anything you need help with today?”

*** If you need some basic information about FM, please feel free to download any of my pages or brochures to give to family and friends.

*** Perhaps watching a short video may help your friends and family understand more.

*** If you are looking for a support group in your area, the National Fibromyalgia and Chronic Pain Association has a list of world-wide groups (it is by no means complete; so if you have a group, please add it to their list)

Letter to a Pain-Free Person (fibromodem.wordpress.com)
Having a Social Life Despite Chronic Illness (theadventuresofarthritisnfibromyalgia.wordpress.com)
Chronic Illness: How Much Do You Share with Your Spouse? (chronicillnessarticles.wordpress.com)
10 Reasons To Increase Fibromyalgia Awareness (fibromodem.wordpress.com)

Posted in Fibromyalgia, Stuff that doesn't fit...

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Tags: bệnh đau cơ xơ, Chronic (medicine), chronic illness, chronic pain, Conditions and Diseases, 線維筋痛, 纤维肌痛, Family, Fibromyalgia, Fibromyalgie, Health, illness, La fibromyalgie, Support group, فيبروميالغيا, פיברומיאלגיה

Hydro Harpy

May 5

Posted by Purple Law Lady

I have just realised that, with all my references to hydrotherapy, I have never described one of my sessions.

The term hydrotherapy itself is synonymous with the term water cure as it was originally marketed by practitioners and promoters in the 19th century. A hydrotherapist therefore, is someone who practices hydrotherapy. Needless to say, the hydrotherapy that I am talking about is NOT the form of torture in which a person is forced to drink large quantities of water. I am talking about a course of medical treatment.

Firstly, you already know that I LOVE my warm water classes. Just stepping into the water (which is a gorgeous 32-34 degrees celsius) is heaven! Most of the pain just dissolves away, like sugar in hot tea. A lot of the time, I am tempted just to float around for an hour, absorbing the warmth into my bones, listening to the lapping of the pool and meditating (I have been told off for that – sometimes the leaders think you have died if you are too still for too long!)

Ok, I’m here to exercise. Every fibromyalgia expert will tell you that exercise is an essential component of any fibromyalgia treatment program. However, most of us complain––with valid reason––that exercise is difficult and painful. This is where Warm Water classes come in. The warmth of the water provides several benefits that make exercise easier, less painful and more effective.

Water’s buoyancy decreases the effects of gravity, displacing 85 per cent of your weight. As a result, it takes less effort to move because you don’t have to support your whole weight.
The buoyancy of the water also takes the weight off your joints, allowing for more flexibility (surprisingly, I can stretch my legs up further and higher).
The hydrostatic pressure of water reduces joint swelling and inflammation, which makes exercising easier and less painful.
Water provides resistance, which helps you increase strength and improve balance. The resistance factor also burns more calories. An exercise done in water can burn twice as many calories as the same exercise done on land.
Immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception.

In the water, all of a sudden, you feel like you can do all the things you used to do! You can work at your own pace to gradually improve joint mobility, muscle strength and general health and fitness.

I go to ‘special’ classes held by Arthritis Victoria (best resource in Melbourne!) throughout Melbourne. Water exercise programs can be done on an individual basis or in a class. While individual programs are custom designed to meet your specific needs, classes are far less expensive and can be just as effective (unless you have a special need that cannot be addressed in a group setting). An added benefit to exercising with a group is the opportunity to interact with other people and make new friends. The classes are run by volunteer leaders who have been trained appropriately. During my first term, I went to an under 55/back class. The class was fun, had music and everyone chatted; but it was further from my home. This term, I started going to another class (closer) but all the fun was gone!. Needless to say, I’m going back to the first one. So lesson one – if you don’t enjoy the first class you go to, try another one!

You do not need to know how to swim (although you may be more comfortable if you can) as hydrotherapy pools are not deep. Also many of the exercises are done with flotation devices. We do a series of exercises, with a floatie-thing around our necks and a buoyancy belt around our waists – there is NO way that you are going to drown! Some of the exercises involve wrapping your arms around the side of the pool and floating, and then stretching your legs in a series of moves – cycling, frog jumps, stretches. Then we turn it around so our feet are holding onto the edge, and we exercise our arms – it may be just moving a plastic soda bottle around, against the weight of the water; or stretching. Everything gets moved, exercised and stretched. The great part is that it doesn’t feel like exercise.

What You Should Know Before Beginning a Water Exercise Program

As with any exercise program, check with your doctor before beginning any kind of water exercise. There are some patients for whom water exercise is not recommended.

Find a program with a qualified instructor. Your local Arthritis Foundation and YMCA are good places to start looking. You might also ask your doctor or physical therapist for a recommendation.

Ask about the temperature of the pool. Since most people with fibromyalgia are very sensitive to cold, the closer the pool’s temperature is to body temperature, the more comfortable you will be. However, do not attempt to exercise in a hot tub without your doctor’s permission. Just sitting in water that hot can raise your blood pressure. Exercising in hot water can be extremely dangerous.

Start slowly, exercising no more than 20 to 30 minutes two or three times a week. Gradually increase your time until you are working out 45 minutes to an hour.

Don’t overdo. Exercising in the water can be deceptive. Because you don’t feel like you’re straining, it is easy to do too much without realising it. Until you have a few sessions under your belt and know how you feel after working out, take it easy. Any time you feel tired, stop exercising and relax in the water or leave the pool.

Do not try to push through the pain. If you experience new or increased pain, stop. For us, pushing through the pain is a definite No-No!

If a particular exercise is causing you pain, stop and talk to your instructor. There may be an alternative way of doing the exercise or you may just need to sit that one out.

Relax, have fun and enjoy your newfound freedom of movement in the water!