Chapter 4 Physical Impact

1. What are the symptoms of “Invisible Diseases”?

a) List of Symptoms

Exhaustion – you experience an increasing inability to find the energy to meet the demands of your day. It is caused by an accumulation of stress, sleep disorder and the need foryour body to fight the antigen, therefore depleting the energy you would normally put into daily activities.

Sweats – this is a combination of anxiety, possibly brought on by stress and the physical way your body works to eliminate toxins.

Inflammation – depending on the disease inflammation can be localized to joints, or encompass soft tissue and joints. Again, it is your body’s way to protect itself against a perceived antigen.

Swelling – accompanies inflammation, as the body fights the disease. These areas ofyour body are often warm to the touch and sometimes reddened, because of the increased blood flow as the immune system battles the antigens in that area.

Rashes – often follow inflammation as an outward sign that your body is at war with an antigen.

Pain – usually the result of inflamed tissue and joints, but can be caused by inflammation in organs as in Lupus patients with systemic disease.

Hemorrhaging – often internal hemorrhaging takes place in the inflamed area, because of ulceration. We see this is Crohns, Colitis, and sever IBD.

Diarrhea – with bowel diseases this is a common problem. Inflamed tissue leads to the digestive systems inability to work at capacity to withdraw moisture from the waste being processed. As your body tries to help the system (particularly in the instance of a partial blockage or obstruction) it floods the intestinal track with extra liquid which increases the symptom.

Weakness – some diseases like MS, Fibromyalgia, Lupus and Crohns result in weakening in the limbs. This often comes as a surprise to the person with the disease, who is walking well one minute, then finds her legs won’t hold her the next.

Dizziness or fainting – as the disease continues, you may be worn down by pain and lack of sleep. You may be more prone to experience dizzy spells and may even suffer short fainting spells.

Poor Vision – if you have an acute case of Crohns, Diabetes and Lupus you might experience problems with vision, that worsen in ratio to the rate of inflammation in your body.

Tissue damage – can result because of the inflammation. It may occur in the skin, joints, blood, organs and other tissues.

Tics – this twitching of muscles, triggered by nerves, may occur when you are chronically stressed

Side-effects – of your treatment or medications may cause you to experience dry mouth, palpitations, constipation, vertigo

You may experience a few of these symptoms or all of them, or some I haven’t mentioned. When they hit all at once, you are in physical hell. There is no one out there who knows exactly how you feel – even another person with the same disease. This is because an autoimmune disease is as unique as the individual experiencing it. You may have similar symptoms but to a different degree, at a different time of day, brought on by a different stressor or trigger; and of course each person copes with the symptoms differently. The one thing you all should do is to treat your symptoms seriously if they persist for more than a few days.
Jocelyn: He had nights sweats that weren’t normal. He kept working really hard on renovations on the home. My mother and I pressured him to see a doctor and finally he went just to get us to shut up. He found out he had an enlarged heart.

Jocelyn’s husband can be thankful that the women who cared about him insisted he go for help, when he persisted in ignoring an important symptom. If you have the courage and commonsense to find out what is causing your symptoms, the next step will be adjusting the pattern of your life to deal with them. Any disease impacts considerably on your physical well-being.

b) Your body’s signals

It’s time to listen up. What is your body telling you? If you are like the majority of North American’s, your body is shouting at you, “slow down, take care of me, I’m not feeling well any more”; and finally in dismay it screams “ARE YOU DEAF?” Too many of us are! We consider a headache as a hindrance, sore feet as an inconvenience, exhaustion unfair. We push on, refusing to pay attention to the mechanism put in place by our creator to help us stay well. We even take pride in it. We’re so brave! (Umm stupid? )

Some pain is a good thing – it is our built in early warning system. The trick is to listen so carefully that we deal with pain or symptoms immediately before they become severe. “I can’t afford to slow down,” you argue, “I have too many people depending on me.” But meeting the needs of your body is the easiest thing to justify. After all, If you continue on, ignoring the pain, the symptoms accelerate until you are no longer able to work. You come to a complete halt. And during that lost time you’re not there for the “people depending on you”. It’s more productive to set a pace that balances your body’s needs with your desire to produce.

Pain, swelling, rashes are the loudest signals your body sends out. However it talks to you constantly. If you are smart you stay tuned in. You hear when it asks you for specific things. It calls for spicy foods when it wants more energy. It requests complex carbohydrates with the B Vitamins when you are stressed. It craves juices loaded with Vitamin C when you’re suffering through a cold. Your body tells you when it needs more liquid, when it must be fed, and when eating will harm it. It cries out when it is tired and must rest, and insists that you allow it to get rid of waste. Introduce harmful agents like tobacco, alcohol, caffeine to your body and it produces symptoms to warn you to take care. Do you listen?

Learn the patterns of your body. Recognize when the rhythm changes. Know the song it sings when it is healthy and the lament it moans in dis-ease. Befriend it, love it, accept it, and it will return tenfold all the attention you give it.

Symptoms are not the evil genies you’re programmed to believe they are. Instead they’re a sophisticated warning system – much like the best security plan for your house. Each symptom gives you a heads-up there is something wrong with your well-being. You may fail to turn on the warning system. It doesn’t fail you. Ideally, you should hear the alarm go off and get help, soon enough to catch the disease in an early stage (one foot through a window) and stave it off with prompt treatment. But what generally happens? You delay until the burglar is already in the house, and serious damage is done. Now the disease takes hold of your body and you experience increasing physical changes. With each change you are forced to identify what is happening, recognize each time it is happening, begin to adjust to it happening and finally accept that it will happen. It is liked hearing the alarm and being robbed over and over again. You must also take into account the time you will wait until the police arrive, or in other words you get medical attention. With the long waiting lists for tests and surgery in our health care system, an early warning system is your best defense.

c) Children’s reaction

Children experience a whole range of physical symptoms just like adults. And though not exclusively a child’s reaction there is often a noticeable change in a sick child’s well-being, that is a combination of physical and mental problems. They appear to lose skills they had mastered. For example, your six year old might suddenly forget he is potty trained and defecate in his pants. Your ten-year-old might begin to wet the bed. A baby might suddenly make shy when she didn’t before. These signs of lost maturity are often accompanied by a decrease in socially accepted practices. Your child might throw tantrums, refuse to do something, become incapable of social interaction with peers or adults. The child might begin to withdraw. Hopefully, these behavior patterns will diminish as health returns, or a chronic state of illness provides the experience necessary to help the child adjust to a new way of living.

Gail: I had asthma so badly I was isolated by my illness, then I isolated myself to avoid being hurt by the other kids.

Individual adjustment depends on the child’s cognitive [thinking] process prior to the illness and how much he or she had already developed. Return to a state of normalcy depends also on the child’s previous coping capacities, prevailing parent-child relationship, current family situation and the psychological meaning of the particular illness.

2. What physical losses might I experience?

Every one of the autoimmune diseases causes some type of physical problem. With many you just don’t have the energy to do the things you used to. With heart disease you just can’t because of angina pain and fear of a heart attack. Here are some of the physical limitations experienced by others who have “invisible diseases.”

a) Loss of strength

Lily: I can’t lift my children or my grandchildren. It was really hard to accept. The first time I realized it I was babysitting and couldn’t lift the baby out of the crib. I had to phone a neighbor to come and lift her into my arms.

Robert: It was really hard in the beginning because I had to ask people to do things I used to do. I had to wait until they were home from work to ask them to help me lift something.

Sometimes the loss of strength forces you to accept the limitation of a cane or even a wheelchair. Some of the people I interviewed refused outright their doctor’s orders to use a cane for support, safety and to aid the body while it recovered. Some said the idea of a cane was repugnant, that it made them feel “old and useless”. Often a cane is the first outward sign that there is something wrong with you. Many refuse it out of the fear of not appearing normal. If you too refuse, you will handicap your body’s ability to heal itself.

b) Loss of mobility

Others fight the use of the cane until their body refuses to do the job without it. Once forced to accept the limitations of a cane over being trapped on a sofa or in bed, they adopted quickly. Maybe this story will put it in perspective for you.

Carrie: Having to use a cane was such a hard thing. I was only 24 years old. It was probably vanity. I said, “A young woman doesn’t use a cane.” It made me feel old and dependent. Now I look back and say, “How ridiculous.” My disease [ past the invisible stage] until I had to use a wheelchair, and now I have a motor scooter. I love it, but I’d take the cane over the chair or scooter any day.

If you are willing to see the cane as a tool to increase your ability to function, you will soon realize how it improves your life. It’s like getting a third leg. You become more sure-footed, confident and balanced. A cane adds to your choices.

You may have lost a different type of mobility like the ability to bend over to pick something up, or stand straight or turn in circles, to lie on your back in bed or square dance with your wife. Each of you is dealing with a loss you must overcome either by invention or acceptance.

When I was having trouble walking because of pain and didn’t have a wheelchair, I would sit in a castered chair (kitchen or office) and have someone push me. If no one was there I sat in the chair and used a toilet plunger to move myself. Sylvia

c) Loss of Endurance

You might think about not being able to run a marathon now, but losing endurance keeps you from doing the simplest things like dressing yourself, getting from the car to the doctor’s office, cooking a meal or working overtime on that deadline. You just run out of steam and the only thing persevering will get you is a series of small accidents and a flood of tears. The loss of endurance is the limitation that teaches you to prioritize what’s the most important thing that you have to do today, second, then third. You learn to stop your list at whatever point your body signals “enough”, without feeling you have failed.

d) Hair Loss

Sometimes cause by the medication you’re on or a treatment, sometimes caused by stress, changes in your hormone levels or malnutrition, hair loss causes a whole new set of problems. Beside the practical problems of how to look good enough to go out the door, hair loss causes a lot of emotional feedback. There are professionals available to help you make the most of this situation and customize the solution to what works best for you. When I lost 60% of my hair due to malnutrition, the first time, I tried wigs, but found I did not feel like “me” while wearing one. The loss of identity was harder to deal with than the loss of hair or concern about my looks. When I lost my hair the next time it grew in curly and for several years I had the best hairstyle of my life. Alas when the greater percentage fell out again, it grew back in straight and white, and I spent years coloring it. I have recently grown it out to my natural color, which is beautiful silver. I feel great and more me that when I colored it. You may take to hats, or put it all out there and shave your head. There are scarves and hairpieces. I bet you could even get a hair tattoo. Don’t choose to hide from life and the people that care until your hair grows back.

e) Loss of bowel or bladder control

i. Incontinence is not usual for people with invisible diseases. However, it might be a short term problem because of several reasons. It may be caused by pressure due to inflammation in parts of your body, or pressure on your bladder. It may be caused by pressure on nerves or damage to them. It may bet the short term results of a test or medication. It is certainly something you want to discuss with your doctor as soon as possible. He’ll be able to help you understand if it is a short term or chronic condition and how to deal with it. There may be medication to help alleviate the symptom. And there are many great products on the market today, so you can continue to be active and involved.

ii. For sheer stress there is nothing worse than searching madly for a bathroom when you’re in public and expect to have an accident any second. As one sufferer of IBD said, “Let’s face it, pooping your pants is just not acceptable.” This is the life of someone with Colitis, Crohns or IBD when it’s not under control. Here is a story that tells you just how physically and emotionally taxing this problem can be.

Naomi: I was with my husband in the Bahamas. He was at a conference and I was shopping. Suddenly I had an attack of IBD and I desperately had to use the bathroom. I was near a restaurant we had gone to two nights in a row, and I had sort of made friends with the owner. Hunched over, holding the tearing pain in my gut, I managed to get to it. It was closed, but there were people inside. I knocked on the window. The owner came and told me it was closed. Dying of embarrassment, I said, “I desperately have to use your bathroom.” He told me they were closed and when they would be open. “But you don’t understand” I said, and told him my humiliating problem. He just closed the door on me and walked away. By this time, I was drenched in perspiration. I had to keep stopping because of the pain. I’d have to crouch over and give myself a talk, “You can do it. You can hold it. It’s passing now.” I managed to get back to my hotel. But it was a terrible experience and most of the people I saw didn’t even know I was in trouble.

Like Naomi, you may be a working adult in a high profile job. You may have an established social life, and group of close friends and suddenly your life is out of control. Yet, because you have an invisible disease, and your bowel movements are certainly nothing you talk about in public, they will not be aware of the tremendous strain you are under in just trying to appear normal. Someone will say, “let’s all go to the ballgame and we’ll take my car,” Naomi shared with me, “I panic at the idea. If I have an attack and have an accident in my car, that’s one thing. If I have an attack in someone else’s that’s panic.”

Because you are unwilling to communicate your problems in this area, you leave others unaware of them. They won’t understand when you think of a reason to drive alone to the game. Your desperate attempt to avoid embarrassment might be interpreted by your friends as anger at them, a wish to be alone, a lack of interest or snobbery. Accumulated instances of miscommunication will cause the relationship to wear thin and may even damage it permanently.

Jocelyn: For months I was suffering IBD symptoms. I would go out to dinner barely drink my water and start on my soup and diarrhea would hit me. It is a terrible feeling.

You can work through bathroom problems by gaining experience and choosing compromise. In time you will know your body well enough to measure the risk of jumping in a friend’s car or going shopping in Bermuda. You will probably share your physical difficulties with a few close friends and family members and rely on them for instant help and creative solutions if you run into trouble. Choose these people based on the humor they can bring to the situation and your comfort level with them. You will learn tricks that help you control when and how insistently your bowels have to work.

• I’m a professional speaker. To be certain I won’t have to rush to the bathroom in the middle of my speech or workshop I stop eating four hours before I go on. If I’m attending an event when meals are served, I ask them to hold mine till later and sip water, tea or soup while the others eat.
• When I have to fly, I refuse the in-flight meal, unless I know I will be landing within the hour. I make certain I visit the airport washroom before taking off and immediately upon landing.
• When I go to a concert, church or stadium etc., I ask for aisle seats so that I can easily get out if I need to go to the washroom.
• If I am in a large gathering like a conference or wedding, I time my washroom trip ahead of or following the rush for the washroom by everyone else.
• If I want to accept an invitation that requires eating before another activity I take a dose of Imodium ahead of time.
• I reconnoiter anywhere I am going to be, to make certain a washroom is available?

f) Loss of security around odor

Again this is one of the nightmares of chronic bowel diseases. You may know where the bathroom is, but you’re most reluctant to use it. Because surgery has often decreased the amount of your bowel, your stool is much more odiferous than normal. Or, you may have chronic diarrhea and be concerned about the odor. You worry constantly (I understand women are more prone to this concern than men) about inflicting that smell on others in a public washroom, or having someone enter a washroom in a home after you have used it. You carry candles and incense, perfume and matches, spray cans and air fresheners and you never stop feeling that prickly sweat of unease. Until you become comfortable with the fact that this is the way your body operates now, you will not let down your guard. But consider how much stress you are placing on your immune system by turning the matter of odor into a stink you just can’t bury.

Henry: When I travel for work I always want a separate room from the other guys. Part of this is because of having gas more easily from certain foods and worrying about the excessive odor and exposing others to it. When we’re in the field my bathroom radar is always on.


Midnight. Air Canada 3000 Flight to Hawaii. Over the ocean, cabin darkened everybody snoozing. Great time to sneak a bathroom break. Worried that I’m leaving an odor, I strike a match. The smoke alarm takes instant umbrage and shrills its displeasure. The male Flight Attendant’s fists hit the door in a frenzied tattoo accompanied by his shouts of “let me in”. I crouch like a cornered vixen, my slacks puddled around my ankles. I jerk them up, crack the door. He tears it from my hands, thrusts in his head, mouth moving like a robot on an assembling line as he reams me out for trying to sneak a smoke. Everybody on the airplane is now awake, staring indignantly as I resume my seat; except my travelling companion who pulls her sweater over her face and pretends she doesn’t know me. Maxine

g) Loss of sunlight

Suddenly something we’ve experienced all our lives, reveled in and used to boost our spirits is a No, No. I couldn’t believe it when I was put on Prednisone and discovered months later exposure to the sun, while on the drug, caused all the nasty brown spots appearing on my skin. For someone who loved to water-ski, swim and sunbathe this was a terrific blow. You may find you can no longer tolerate the sun without adding to your problems.

Sylvia: I found out that stress and sunlight are two of the triggers for Lupus. Sitting in the sun can cause an attack. I sat in the sun on a camping trip and had to go into ER.

Maxine: A trip to Barbados turned into a nightmare when I exposed my body to the sun for a few minutes one day. I had terrible muscle pain, sweats, rash and felt like I was suffering a bad flu.

h) Loss of body parts

With each surgery you lose a little bit of yourself, and your whole being recognizes that loss. You might not be consciously aware of this, with your focus on fixing the problem so you can get better. But your psyche may be at work dealing with the grief of this loss. You may recognize it as a period of sadness you can’t quite explain, or a longer period of depression. Once you understand it is an expected, necessary and acceptable part of the process you can experience your grief and then let it go.

I find that every once in a while, my grief returns briefly to remind me that I am a different person now. Parts of my intestinal track are gone forever. The old me is missing. Then I remind myself that the new me is wiser, stronger and quite exciting to live with and I move through that sad moment and into the next which I choose to fill with joy.

i) Loss of Freedom

Being hospitalized whether for tests or treatment can be a traumatic experience. You are already battling for control with whatever seems to have taken over your body. Now you feel like you have lost control of your privacy, time and space. You’re expected to follow a long list of stringent rules, each of which is a potential stressor. These rules dictate who you see, when, how many at once, what you wear, where you go, if you’re free to do this or that or when you are forced to do this or that. But possibly the hardest part of hospitalization is the sense that you are no longer in charge of what happens to your body. For example until you sign a form listing several options for the surgeon to deal with the unexpected, you are not able to have surgery. This is commonsense as you can hardly have a confab about your treatment while unconscious on the table and you certainly don’t want the surgeon to close you up and do it again after you’ve talked. However, having this license might mean you go into surgery like the woman who is having a biopsy and comes out minus her breast. There is a sense of helplessness as you sign your release form and a real fear that you have lost control over what happens to you next. The secret here is to remember if you can’t take action change your attitude. Take ownership of the decision to be in hospital, have that test and sign that form. It will give you back your sense of freedom.

j) Loss of body

Yes, out of body experiences do happen. You may float above yours watching everything around you with interest, as if it is a fascinating dream. When you deal with the reality that they did occur, once your spirit returns to your body, you experience a sense of loss.

Sylvia: I had waves of fire moving from my toes to my head. I felt like I was in a kind of trance floating above my body. It seemed like I was perched, kind of lying along the top of a picket fence. I could fall to either side. In my head I felt like I had a choice that moment to live or die.


They were using codeine to constipate me and I was given too much for too long and started hallucinating. I did the very cliché little green aliens thing. My spirit, floating near the sunny window, watched, as dragging my tubes and drains, I fought my way out of bed and followed my cute little friends into the bathroom. I was having a garbled conversation with a bunch of them who were swinging from the towel rack, swimming in the sink and enthusiastically persuading me to join them. Of course, when the nurse came in none of them stuck around to take the blame for my being out of my head and out of my bed with my intravenous ripped out. I returned to my body to help explain that other woman’s actions. Maxine

3. How do I maintain my energy levels?

“I use my precious stores of energy effectively.” Jocelyn

a) Where did my energy go?

Here’s a biggy. You may not realize how much you rely on the inexhaustible supply of energy you use until you lose it. Today energy is almost worshipped – it’s a special commodity no one wants to be without. We talk of conserving it, expending it, regenerating it, storing, burning and rationing it. You may see it as a sustainable product, but when your body is no longer capable of producing it you are a lost soul. If you re-coup just a little you are ecstatic. Chronic disease is a constant striving to balance the amount of energy you produce with what you use. The laws of physics state that it takes a lot more energy to start and stop an object than to produce continual momentum. So, every time you make the decision to deny your disability you force your body to a point of rebellion – it stops – you lose precious time and energy while you regenerate it.

Of all the physical limitations this loss of energy hits you hardest. I remember going for months feeling like I was trying to run through chest high water with every step. People who are used to being healthy, take their energy level for granted. So when they begin to experience loss of energy they are confused about what is happening.

Melanie: I didn’t work for a year, then my energy level started coming back up. I didn’t think I would ever have energy again. Now I am really conscious of my energy level and work to preserve it.

Robert: Sometimes I’ll be working in the yard and I can hardly put one foot in front of another. If I had several days like that I found I started having accidents.

You may be months into your chronic disease with your energy levels bottoming out, before you understand, or someone explains it to you. Common ways that you are losing energy are:

• Your body is siphoning it off in order to fight the disease. The more serious your condition, the more of your functions your brain will shut down in order to send more help to the fighter cells. It’s like the commander of the Voyageur saying “relay all power to the life support systems”.

• It is being used up as you fight pain. When You experience chronic pain you use huge amounts of energy to monitor it and either cope with it or fight it. Generally it takes days of pain before you realize how totally depleted your store of energy has become.

• You are not creating it because symptoms of the disease, worry or stress are keeping you from getting the necessary sleep you need to build new cells and thus new stores of energy.

• You are using it ineffectively by reacting to the stressors in your life, instead of using them as positive means of change.

b) How can I get my energy back?

Once you realize what is happening, conserving energy and creating new energy become priority steps in your struggle to return to wholeness. Every one of the people I interviewed stressed the importance of exercise in rebuilding their energy levels.

Shelley: Exercise rebuilds my energy faster than anything else does so I work out three times a week.

Jocelyn: You know energy makes energy so you force yourself to exercise. I did some painting last night and wasn’t feeling well, so I went for a walk just to get that humph back!

Because having enough energy is a priority with the chronically dis-eased, they have numerous suggestions for how to go about producing and conserving energy.

• Focus on just one task at a time and complete it before moving on, so that you don’t lose energy being unfocused.
• Try to control your emotions so that you don’t burn up energy by over- reacting.
• Work further ahead so that you don’t exert energy sweating deadlines.
• Limit what you do in a day.
• Get energy by listening to music or picking flowers.
• Get energy by being in nature – inhale it from rocks and trees and water.
• Activities that soothe (like baking, knitting) increase your energy.
• Monitor energy levels by listening to your body and stop before you deplete yours.
• Take one day a week to replenish your energy by using that day to relax.
• Try to keep yourself on a straight line emotionally and physically because peaks and valleys take more energy and it takes you longer to replace the energy you use dealing with them.
• Plan the things you most want to do for your highest energy time of day.
• Exercise in the morning so that you build up more energy for the rest of the day, rather than waiting for the end of the day when you don’t have the energy to exercise.
• Take power naps whenever you feel your energy waning.
• Stop fighting with everyone. Keep your energy for more important things.
• Don’t beat yourself up mentally. It robs you of energy.
• Set goals so you have something to work toward and you don’t waste energy wondering what to do.
• Save energy by speeding up your decision making process. Don’t procrastinate.
• Refuse to worry about things you can’t control.
• Cut back on tasks you did that were quite physical like yard work and replace them with activities like meditation that build energy rather than expend it.
• Ask people to come to you if you think going to them will stress you or tire you.

4. What role does function play?

When you really look at the physicality of your body you see there are many ways in which it functions. I can be dealing with the loss of bowel function, while you are trying to get your legs to carry you. You may be obsessed with one failing function while able to, if not ignore, at least not focus on others. Here’s what the people I interviewed had to say about losing function.

Carrie: I have to calm down about a situation because stress is the worst thing for MS. If I’m not mentally prepared my legs and hands won’t function right. I can only manage the stairs a few times a week. If I’ve used up my stair points I know I won’t be going down them again.

Lily: It’s my thumbs that cause me the most frustration. I’ve figured out a way to do most things but my thumbs are turned back on themselves and I have to use the first joint and you can’t do up buttons with a joint.

Daniel: It’s hard to comb my hair or brush my teeth since the strokes. I’m weaker in one leg and arm and I’m limited physically. When I walk slowly I lose my balance, and I’m clergy and need to walk down the aisle in a church.

Gail: I feel like I’m running at 80% of capacity all the time. My expectations of myself are higher and I find it frustrating to constantly fail them.

Shelley: I lose my function because of the drug I need to take to deal with my SAD. When I’m on the drug I don’t feel like me. I lack energy and ambition and move through the day like a zombie.

a) Your Yardstick

“If you say you can’t, you’re right, you can’t.” Carrie

Function is the yardstick against which you measure your advances and retreats, or in other words the severity of your symptoms at that time.

Phillipa: I can judge how much the disease is at work by when my brain gets better and starts functioning again. Then I get back the faculties I lost while the Lupus raged. If you took my brain function on a curve maybe there are times it’s functioning at 65% of what is normal for me, at other times I’m functioning at 95%, then maybe 85%. I’m always making a measurement to see how well I am overall.

Carrie: My ability to function has probably stabilized over the last five years. I can look back and know what I did then and what I can’t do now. I used to do a lot of stretching and yoga but now I can’t physically do a sit-up.

“Sometimes I feel an overwhelming sadness,
a total reality that I will never get back what I have lost. “ Carrie

b) Your Benchmark

So then maximum function, what you remember as your peak ability to function, becomes your benchmark or goal. It provides hope and something to aim for. As Phillipa says, “I can put up with the frustration knowing it [the symptom limiting the function] will go away in its own time.”

“To think that next month, or three months from now,
I will regain the capacity to function as I once did is encouraging.” Phillipa

For your benchmark to be encouraging or provide satisfaction when met, it must be reasonable. Carrie describes it like this. “I say, ‘This is my goal for tomorrow.’ Maybe all it is doing one load of laundry. I set my mind to do that one thing. It’s silly, but it’s almost like having something special to look forward to. If I do it, that’s a good day.” So that’s what it is about, a sense of accomplishment. And the satisfaction of meeting a goal like doing a load of laundry is just as rewarding, at the moment of victory, as publishing a book, or winning a marathon.

5. Can I surpass my physical limitations?

One great thing about humans is they always can find a creative route around an obstacle. Robert, because of heart disease, told me he can no longer walk the eighteen holes of golf with his friends. Now he walks nine and rides nine. Whereas Lily with rheumatoid arthritis can no longer swing her club, but she drives the cart for her husband and friends and maintains she has just as much fun. Rising above limitations opens new doors. Put your fears aside and see what is waiting out there for you. You may find you’re thriving.

Robert: The doctor told me I could still curl if I didn’t sweep. So I became the Skip of the team.

Matthew: I wanted to be a professional athlete, but the Diabetes took my eyesight in one eye and pain prevents me from running; so now I’m learning to be a Massage Therapist and hope to specialize in treating athletes.

Jocelyn: With the Fibromyalgia I needed a way to de-stress on weekends. I couldn’t do it if I stayed home so we bought a cottage. It has been a godsend. It provides a means for me to be in nature and build energy.

“When we go through the dark night of the soul,

growth comes out of the experience.

It is the closest you ever come to your true self.” Jocelyn


1. Take action or change your attitude in order to take ownership of each situation and feel that you are still in control. List upcoming scenarios (visits to doctor, a treatment, an extended meeting) where you feel control over what happens to your body might be taken away from you. Write down what action and/or attitude change you will make to deal with each situation.

2. Begin to listen to your body. This will necessitate quiet time built into each day. Find a comfortable position and take stock of your well-being.

a) Note of foods your body is craving and provide those foods. Monitor how they affect you.
b) Note the signals your body sends out around pain and infection and move on them quickly.

3. Experiment with ways to increase your energy. Try something new each day. Make a note of which activities make you feel more alive. Schedule them into your day.

4. Make a list of what functions you feel are limited or lost. Write beside each a reasonable benchmark for that function today (e.g. Too weak to do laundry – I’ll sort it) (e.g. Can’t stay for the whole meeting – I’ll stay the first half hour and read my report at the beginning).


  1. Bev Galbraith
    May 27, 2015

    Thank You! Reading about the reasons for some of my symptoms really helps make sense of my new life.

    • Madelon
      May 27, 2015

      Bev, glad it brought new understanding and hopefully, new actions and attitudes to dealing with your challenges. I note you were up late doing this, and recommend you read Chapter 5 on Pain.

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