I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:
Can you please help explain how I can get started with exercising – I want to but can’t get up off the lounge most days and can’t even do all my housework.
From Fleur in Pasadena
Let’s start by talking about something called “Fear of Pain”
If you’ve ever attended a Pain Management course, one of the first things they talk about is the mechanism of Pain – and the fear that comes with having pain. We’re afraid that pain is our body telling us that something is wrong and more pain means more is wrong. That’s not always the case though and the trick is determining what is “bad” pain and what is “good” pain. Exercise is generally considered to be “good” pain because it’s not causing further harm to your body. Your mind needs to be convinced that what you are feeling isn’t more harm, but simply a response to the muscles and tendons being used in a way that you’re not used to. No actual damage is being done, so while you may need to start slow, exercise is encouraged when you have Fibromyalgia. In fact, the worse thing you can do is to remain sedentary as that causes your muscles to atrophy.
There are simple moves you can do to get started on an exercise program at home that will be easy on your joints yet still give you a workout. As always, make sure you get your Doctor’s approval first.
Start with simple Stretches:
Move on to Squats, Wall Push Ups and Bicep Curls (with or without light weights)
Finish off with walking, swimming, Aquafit, or Bicycling. Even walking one block a day is a good start – add an extra block as you grown stronger, or an extra lap in the pool. The goal is to move just a little bit each day (i.e.: do 1 squat a day for a week then try 2 the next week).
Nordic Pole walking is extremely popular and works your upper and lower body while giving you stability while you walk:
The added benefit is the more you do, the more you’re capable of at home. Doing the dishes, sweeping the floor, folding laundry – they all count as movement and exercise as well. I’m not saying you need to run a marathon or do everything at once, but start slow, and realize that yes, you might feel a bit more pain in the beginning, but it’s simply your body getting used to something it hasn’t experienced for awhile. Give it time to adjust and you’ll see a difference before you know it. It takes 21 days to make a habit so give yourself 3 weeks before you “give up”. I’m willing to bet that if you’re honest with yourself and you don’t cheat, you’ll notice a positive change at the end.
As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.
Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.
And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.
So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.
What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?
In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.
What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.
Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!
So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.
That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!
Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.
Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.
All That Matters
It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought
Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings
I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye
It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round
Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.
I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. I wanted to share this question and then answer it:
What is a typical day like in your life?
From Pamela in Langford, BC Canada
It’s 2:30 in the morning and the house is quiet. I’m sitting in my recliner with Dorie, my cat on my lap, and the TV on the CatTV channel on YouTube. I went to bed at midnight but I only managed a couple of hours of sleep before I woke up, so here I am again, back on the computer in a quiet dark house. The only sound I hear is snoring – from both husband and cat, and I shake my head, not quite laughing as I listen to them both. I wish it was me, but once again, this means Wakefulness has won this battle and persists in keeping me away from Dreamland. I hurt all over, every muscle is aching and Painsomnia wins again.
So starts a typical day in my life. I live with the Chronic Pain of Fibromyalgia, osteoarthritis and several other conditions and it’s often the painsomnia from these conditions the keeps me awake at night. At this point, I’ll probably just stay awake until Ray wakes up in the morning at 4:30. There’s no sense trying to sleep now because I’m too awake. So I do what I always do; I surf the Internet, I go on Facebook and I write; either on my blog or for one of the various articles I’ll be submitting to other publications. I often find it easiest to write in the middle of the night; my thoughts flow freely and things come to the surface that are easier to write about, whether they be memories or new subject matter.
At 4:30am the alarm in our bedroom goes off and Ray wakes up. I head to the kitchen and put the dishes away from last night and make a cup of coffee for myself before heading back to my recliner while he finishes showering. I stay here until he leaves for work, so I’m out of the way. He finishes his shower and comes to kiss me good morning, then makes his breakfast while I stay out of the way. I am busy updating my Facebook page and morning Devotionals. We exchange kisses and he heads out, and then I force myself up from the comfort of my recliner. I have some cereal or yogurt for breakfast and enjoy another cup of coffee before I get serious about doing some work. Much of my day is spent on the computer generally taking care of blogging, moderating a forum I belong to, checking my email and visiting Facebook. No real change from the wee hours of the night!
At 7am, I take my first dose of medications for the day. Every hour, I make myself get up and do some stretching. My body screams back in pain, but if I don’t do this my muscles will atrophy. I also try to get one major chore done around the house, whether that be sweeping the floors, scrubbing the bathroom, vacuuming, etc.
Lately, I’ve been dealing with back pain and spasms in my SI Joint on the left side and an area around the left facet joint in my lower back. The pain has lasted for 2 weeks and I’m off to see my Pain Specialist on the day of writing this (Oct. 22nd) as well as my family doctor, plus I’m meeting a friend for lunch. It’s a much busier day than usual. Normally I would eat lunch around noon, and then check the mail at 2pm – the highlight of my day!
While most days are spent at home, I do have doctor appointments on a fairly regular basis. I also have work that I do for my volunteer positions, including conference calls that happen in person and online. As part of my health journey, I go for regular massages as well, and there will probably be some physiotherapy appointments coming up too so my calendar will start getting busier. My rule of thumb is to keep an open day after every day that has something planned so I can rest, otherwise, I become too fatigued to manage.
At 3pm, my alarm goes off to take my afternoon medication.
I often lay down for a nap at this point and can usually sleep for about an hour. When I wake up, I’ll read for a while, or watch something on Netflix, and if I have the energy, I’ll start prepping dinner. We do a lot of prepared food in our house as I don’t always have the energy to do a lot of cooking. M&M Food Stores get a lot of business from us! Tonight though it will be leftover Chinese food, so no worries about having to cook! I’ll get back on the computer until Ray is home, and then we’ll sit down for dinner and talk about our days.
The evening is quiet. Ray plays a game on his computer and I continue to work on blog posts and hang out on Facebook, etc. or read a book or magazine. Dorie, our cat curls up with me and it’s a comfortable place to be. I take my evening medications at 7pm and by 8:30pm, Ray is heading to bed. I’m tired, but I know I’m not ready to sleep, so I tuck him in with a goodnight kiss and head back to my recliner. I’ll do up the dinner dishes shortly and then spend the rest of the evening on the computer, chatting with friends, reading magazines, and unwinding. I take my final medications at 11pm and turn off the computer. Sometimes I read, and sometimes I just listen to relaxing music until midnight. That’s the end of the day for me. I crawl into bed, my body aching all over, and pray that sleep will come. I drift off, finally and start dreaming…
It’s 2:30 in the morning and the house is quiet. I’ve just woken up…and there will be no more sleep tonight.
I’m so tired, I’m repeating a post from the past!!!
Have you ever felt exhausted? So exhausted you could barely move? The kind of exhausted that leaves you feeling almost helpless? Guess what…I have a new word for you!!!
Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!
Taken from Grandiloquent Words:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy. Origin uncertain Used in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality have been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time. I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
It’s like swimming through concrete while being on fire at the same time (this was mine).
It’s like constantly having a “pins and needles” sensation that never goes away
I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
I feel like I’ve been in a war, but you can’t see my wounds
Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.
There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:
Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
Power down the electronics (TV, computer, Smartphone, etc.) one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
Limit Alcohol before bed. You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.
If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. In the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.
Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?” “Where did I put the chequebook?” “When is the next Book Club meeting?” Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.
Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.
I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:
Do you have spiritual beliefs that help you cope with living in this hell?
Before I answer, let me ask you a question. If you live with Fibromyalgia, Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”? What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?
I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.
I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first.
So, in regards to the question that was asked, yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes Chronic Pain and Chronic Fatigue from the many conditions I live with. Have I ever asked God for healing? Yes, I did once. I prayed:
“God, if it be Your will, please remove all sickness from my body and return me to good health. If you leave my body the way it is Lord, then please give me the right attitude to learn to live with the pain and fatigue that I experience. Please help me learn to not complain because I know that there are so many other people out there that are worse off than me. Give me an attitude of grace, help me to be humble, let me have patience and let me always be of help to others so I’m not always focused on me. I know I can be selfish and self-centred so please help me to change that part of me, God. Make me a better person than I am today. Help me in my relationship with my husband because I know this is going to make things tough for us. Thank you God for everything you’ve done for me, let me always be grateful to you. Amen”
God’s plan for me was obviously not to heal me, and in fact, my health has become worse in the 5 years since I said that prayer. Am I bitter? Not at all. None of us has ever been promised anything. Why shouldn’t I have health problems? Why not me? What have I done to make me so special so as to avoid bad things?? Nothing. I’m just as susceptible as anyone else, and I know that. And I think that’s where acceptance comes in. I’ve accepted that this is what my life is. I probably will not be healed on this side of Heaven, and that’s okay. I DO know that I’ll be renewed IN Heaven according to my beliefs and that’s a comfort to me. I can put up with what happens in my life because I know the promise I have for Eternal Life in my future.
And that is how I cope. I cope because, for me, I can see beyond what happens to me on Earth. My spiritual side believes in Life after Death, and in an Eternal Heaven, where my body will be renewed. There will be no pain and no sorrow and I will be free of everything that troubles me in my Earthly life. There won’t be any more Chronic Pain or Chronic Fatigue, my body will finally be free of all restrictions and for that, I can withstand whatever it is that I have to go through while I live my life here.
What about people who don’t have a Spiritual belief system? What about the people who don’t believe in an Afterlife, a Heaven or Garden of Eden? What happens to them? Well, according to MY beliefs, anyone who doesn’t accept Christ as their Savior goes to Hell. According to THEM, they likely believe that nothing happens when they die; that there is nothing after death. We could delve into a huge discussion of Theology now, but my point is, without some type of Spiritual belief, what in the world are you living for??
My Spiritual beliefs are what keep me going. That promise of Eternal life is what I cling to when I have days of intractable pain. When I think I can’t possibly handle another new condition or illness and God decides otherwise, I have no choice but to hold on to the hope of Heaven
One of my favourite Bible verses comes from Jeremiah 29:11 (King James Version)
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
That is exactly what my Spiritual beliefs do…they give me hope and a future, knowing that something better is coming. It’s also the reason why my blog is named There Is Always Hope. I believe it to be true, both here on Earth and onward in Heaven.
I hope you, the reader, have a Belief system too. It may not be the same as mine, but I hope you have something to believe in. Something that helps you get through whatever life throws at you. Something to cling to in the dark hours.
What do YOU believe in? What ARE your hopes when all seems hopeless? How DO you manage in times of trouble and crisis?
To understand how natural pain relief works, it’s important to understand how stress affects your body. Our body has a natural “fight or flight” response when it comes to stress and pain and stress have a similar effect on the body: your heart rate and blood pressure rise, breathing becomes fast and shallow, and your muscles tighten.
With chronic stress, the nervous system keeps the body on constant alert. This takes a big toll on your system. Levels of stress hormones increase, and muscles remain in a nearly constant state of tension.
Chronic stress hurts.
Relaxation calms the mind and helps the body unwind. It is particularly important for people who live with pain. Pain increases muscle tension which in turn, creates more pain. When muscles are tense, they tighten and increase pressure on our nerves and other tissues which can make the pain worse. Relaxation can help break the pain-tension cycle. There are many forms of relaxation techniques so it should be easy to find one that works best for you.
The easiest one to begin with is deep breathing. Shallow, rapid chest breathing results from tension. Deep breathing from the diaphragm helps relax you. To begin, find a warm quiet place, where you won’t be disturbed. Once this technique is learnt, you can use it in almost any situation you find yourself.
Make yourself comfortable
Loosen any tight clothing
Begin by listening to your breathing as it is
Breathe through your nose whenever possible (use your mouth only if your nose is blocked)
Put your hands over your stomach area and feel them rise and fall.
Imagine you are breathing into your hands. Relax your stomach muscles. Take deep, slow breaths. Remember to breathe at your own pace
As you breathe in, imagine you are breathing in peace. As you breathe out, imagine you are blowing away tension.
Inhale to a count of four, hold for a count of four, exhale to a count of four, then hold again to a count of four
Breathe deeply, so that your stomach rises and falls with each breath
Repeat for ten cycles
Progressive Muscle Relaxation
Tense and relax each muscle in turn unless it hurts, in which case, leave that one out.
Sit or lie down quietly in a comfortable position
Close your eyes and take slow, deep breaths. Breathe easily and naturally
Slowly tense each muscle in your body. Begin with your right hand. Squeeze your right hand into a tight fist. Feel the tension in your right hand. Hold this position for a few seconds. Now release the tension slowly. As the tension disappears, your hand feels relaxed.
Repeat this for your left hand.
Arms – tense both arms. Make your arms rigid and tense. Hold and release
Shoulders – lift your shoulders. Hold and release. Hunch your shoulders to touch your ears. Hold and release.
Toes – curl your toes up. Hold and release.
Feet – pull your toes up towards your face. Feel the muscles working in your shins. Hold and release. Then point your toes away from your face. Feel the muscles tensing in your calves. Hold and release.
Legs – clench your thighs. Hold and release. Clench both buttocks. Hold and release.
Eyebrows – raise your eyebrows as high as they can go. Hold and release.
Frown – pull your eyebrows together. Scrunch up your whole face. Hold and release.
Eyes – screw up your eyes tightly. Hold and release
Jaw – Open your mouth wide. Hold and release
Now your muscles are relaxed. You feel calm and still
Relaxation exercises calm your mind, reduce stress hormones in your blood, relax your muscles, and elevate your sense of well-being. Using them regularly can lead to long-term changes in your body to counteract the harmful effects of stress.