Chapter 8 Lifestyle Changes
1. What changes are needed at work?
a) Negotiating new terms
For months, maybe years before you are diagnosed, you may be struggling with the symptoms of the chronic disease attacking your body. Eventually this will affect your performance in the workplace. You will reach several points when you need to request changes that will help you cope.
After many painful lessons in the school of hard knocks I have concluded I can only work a few eight hour days in a row before I am drawing on my reserve energy and getting in trouble. I had to accept that I could only work part time in order to create the optimum lifestyle for staying healthy.
- Sick leave
Suddenly you might be missing work repetitively, or in a pattern (i.e. by Thursday you are so tired you take Friday off). At first taking sick days will be acceptable to you and your employer. After all that’s what they’re for. But as the number of days and number of times you are off work increase it causes problems for your employer and adds to your stressors. Firstly, if you are conscientious you feel badly about taking so much time away from work. Secondly, there is even more pressures at work as you try to catch up after days away. It is not a situation that can continue long term. This is when it is necessary to negotiate with your employer. You might ask to work part time or request a lateral move to a less stressful position. You may ask to job share with someone else, or decide to take a reduction in pay and do a less tiring job. You might ask for time off to recoup your energy, or arrange to work at home and save yourself the time and energy used up commuting to work. To make the best choice for you, monitor the situation over several months. Recognize patterns of behavior, factor in busy times at work and take into account whether your condition is improving or becoming worse.
After two years away from her law practice in Boston, Kathy Rabin attempted to gain her career back. This is what she wrote.
“I tried to go back to work out of my home doing legal research and writing. My hope was that I could gradually increase my work activity and get off disability. I was not successful. I found once again that working compromised my health and my quality of life.
Because of work deadlines, I was no longer able to listen to my body when it told me to rest. I had made professional commitments and had to meet them despite how I was feeling. I had to quit my physical therapy program because it left me too tired to work. Also, I became very isolated. Whenever I felt well, I stayed in to work and, when sick, I stayed in bed. My condition deteriorated. I experienced relapses of up to several months after completing big projects during which I was bedridden or housebound.”
- Job hours
You will also need to negotiate time off for appointments, treatments and tests. It is important that you factor in travel time and build in a cushion of waiting time when you take your request to your employer.
You might wish to negotiate new job hours. You could suggest coming in later in the morning and staying later at night because you are not able to fall asleep until dawn. You could ask for fewer hours in your workday, accepting a cut in pay for lost time. You can negotiate the number of days a week you work or the number of hours per week, to take some pressure off of yourself.
If you are self-employed then you are probably going to have a lot harder time of it. A large percentage of the invisibly ill are entrepreneurs. You’re the worse boss you can have, because your business has and probably still is taking precedence over your health. When it comes to negotiating for time off or a lighter load, have the same compassion for yourself as you would show to an employee.
Shelly: I book [make an appointment with a client] a reason to get me up in the morning – so I’ll have a lot more early morning meetings and phone calls when SAD is worse –so that I’m forced to get going and that takes me on into the day. You can tell how bad SAD is by my kilo readings. When it’s bad I try to do my work by phone and minimize my driving. I’ll limit the number of cold calls I make because I know I’ll do a poor job of selling.
Your chronic condition will start to affect your performance and the standard of your work will drop over time. Even the most determined perfectionists can’t stand forever against sleep deprivation, anxiety, depression, pain, loss of focus, concentration and short term memory. When you realize your work is deteriorating, it is up to you to bring it to the attention of your employer and negotiate support. Certain tasks may be handed over to someone else short term, or you could request that someone check your work before it goes out. Your employer might decide your work is not up to the standard necessary and assign it to other employers. You must be willing to accept this present situation and work to make it as temporary as possible. There are new tricks you can use to keep your performance level up.
- Travel time
Shelly: I limit the driving because I know it will cause me more stress. I limit face to face encounters because they cause more stress.
You may be able to limit your travel time by working out of your home, or make it work time by changing the way you travel (e.g. carpool or transit so you don’t have to drive yourself).
- Reducing stress
At the end of the day, Shelly makes a point of scheduling quiet time to alleviate the buildup of stress in her mind. Melanie, who had many irons in the fire when it came to working, began to eliminate her jobs one at a time until she reached a level she could handle. I’m generally careful to set realistic deadlines for my writing (I missed by a long shot on this book) but I’m using what I learned in “not sweating it” over the years to take the pressure off myself and set a deadline I can meet.
Henry: Another trigger is when I have a whole bunch of jobs to do and I wake up tense thinking I have to do this and this and this. I’ve had to train myself to say I only need to do this or this, and the other things can wait.
b) Getting a job
Matthew: I sometimes wonder if my diabetes hasn’t kept me from getting jobs. I always am truthful on the application, and then the guy may look at it and say, “I don’t want to have to handle the situation if he goes into shock or a coma.”
In 1990 the Americans Disability Act was passed requiring employers to make adjustments and accommodations for people with disabilities and chronic conditions. As of July 1994 in the States, companies with 15 or more employers are required to follow the ADA guidelines in implementing necessary changes to accommodate these workers.” Although smaller companies are not forced to follow the guideline, many of them embrace the opportunity to enable their employees with disabilities to continue to work. In Canada these laws come under Federal Jurisdiction and comply with rulings set out in the Canada Labour Code.
Ergonomics is the science of customizing a workstation to the needs of the worker to provide the maximum degree of comfort, efficiency and safety. If you are presently working at a counter too high, sitting in a chair that angles uncomfortably or being forced to use a keyboard at the wrong height for your body, you are experiencing greater physical stress than necessary. It is in your own best interest to discuss ergonomics with your employer and co-workers and have your work area customized.
Presently, one of the key issues medical specialist and scientists are examining is the effect of long term sitting on workers. Several new studies show higher risks of heart disease and cancer in people who sit for extensive hours a day – such as writers. Should I be afraid? No. Moderation in all things drives my timelines. If I sit long hours, I find ways to break up the time, stretch, take rests and exercise.
d) Repetitive Strain Injuries
This type of injury is a common side effect of much of your work, as many of the tasks you do are repetitive. There are great books out there to help you assess your situations and apply common sense solutions to eliminate strain caused by work. There is also a wide range of inventions to assist you in reducing the strain you experience. Find out from your doctor what will aid you and implement.
2. How do you change what and how you eat for the better?
a) Changes in eating habits
- Eating for health
Your doctor is almost certainly going to recommend that you change your eating habits in some way. He might ask you to cut out chocolate, caffeine and acidic foods to eliminate some of the inflammation of arthritis, Lupus, Crohns and fibromyalgia. You might be told to go on a low fat diet to lower your cholesterol levels if you have heart disease. People with diabetes are asked to reduce their intake of carbohydrates and those with bowel diseases milk products, whole grains and spicy foods. Almost everybody is told to lay off alcohol – except for those with heart diseases. Studies continue to show that one glass of red wine a day is beneficial in lowering cholesterol level and removing plaque from the arteries.Changing your diet appears to be a great hardship at first. Some of you are being asked to give up your comfort foods, or the alcohol and caffeine you use to deal with stress. But do investigate this area for yourself. There are many good books out there. I highly recommend Foods That Fight Pain by Dr. Neal Barnard. It is a book that appeals to our common sense while at the same time giving great hope. It shows the dramatic differences that a change in diet can make to our health. For example Dr. Barnard describes work done by Dr. Dean Ornish in proving that heart disease can be reversed through diet. One group of patients with heart disease was placed on a typical low fat diet that any doctor would prescribe a heart patient. They were to choose skinless chicken and fish over red meat, quit smoking and try to stay active. The second group was asked to follow a vegetarian diet (eliminating all meat, fowl, fish). They were to quit smoking and exercise thirty minutes a day or one hour three times a week and do some type of daily stress management exercise like meditation, yoga etc. A year later each patient had an angiogram that was compared to his or her initial angiogram. In the case of those on the regular heart diet there was no change in arterial blockages, in fact some had grown. In the case of the second study group, the vegetarians had an 82% improvement rate. “They were actually starting to clean themselves out. This wonderful result was achieved without medication or surgery. Their blockages shrank simply by using vegetarian foods with mild regular exercise, stress management and no smoking. Their chest pain went away before the year was up, within weeks of starting in fact.” Barnard concludes. They also lost an average of twenty pounds each and felt more energetic than they had in years.
Barnard points out that both groups grumbled about the changes in their diets, but the vegetarian group learned to love theirs, while the heart diet group became more bored with theirs. And everybody grumbles about change initially. If you elect to have surgery or go on a cortisone drug rather than try dietary change your doctor will still ask you to change your eating habits in some way. Let us be clear. I am not advocating you try a vegetarian diet without going to your doctor. However, this is an excellent way to work at self-healing while waiting for diagnosis. Who knows by the time you receive your tests results you may have already minimized the problem just by changing the way you eat.
- Eliminate Free Radicals
Free radicals are found in even healthy bodies. They are necessary for such jobs as toning our muscle mass. However, the concern is not to let an excessive amount of Free radicals loose in your body, because they do considerable harm. Free radicals are actually unpaired electrons that are looking for a partner. In their search, they bump into paired cells, damaging them. If you saw a slide of your blood magnified and you had Free radicals running freely through it, you would see that your red and white blood cells are actually misshapen from being in collision with the Free radical. Damaged cells are not able to do their job at 100% and so your body’s ability to heal itself is handicapped by an excess of Free Radicals. The more unpaired electrons there are, looking for a mate, the more damage is done. It is in your best interest to eliminate as many sources of Free Radicals from your lifestyle as you can.
The Enemy –Sources of Free Radicals
Carcinogens Pollution Smoking
Alcohol Lack of exercise Viruses, infections
Allergies Foods (preservatives) Stress
- Add antioxidants
Antioxidants are your body’s allies. They enter the body through food sources are processed and move through the blood stream, where they locate the Free Radicals, and wrap around them so that they cannot continue to harm other cells. Bound by the antioxidants the Free Radicals are then removed through your lymphatic system (the body’s waste disposal system).
Antioxidants are found in the following:
The Allies – Sources of Antioxidants
Vitamin C Vitamin E + Selenium Beta-Carotene
Evening Primrose oil “Green” foods Garlic
Grapeseed Extract Vitamin A Zinc
“But where do I find all these sources?” you ask, possibly envisioning, like myself, yet more pills to take, more expenses. All of them are found in the foods you eat, if you make the right choices. Following is a list of foods that will provide antioxidants to your body as well as some suggestions of other diet changes you should make in order to eliminate an excess of Free Radicals.
REQUIRED DIET CHANGES
Red/orange fruits and veggies alcohol
Green cruciferous veggies caffeine
green tea red meat
essential fatty acids: flaxseed minimize poultry and fish
Alpha-linoleic minimize dairy products
Beans, nuts, legumes minimize processed, starchy food
Organic whole grains
lots of PURE WATER
- Naturopathic remedies
Echinacea is also a great booster for the auto immune system. Along with many other alternative medicines is a natural way to treat your body. Visit a store specializing in herbal remedies and read the literature available. Many stores provide a book that lists symptoms so that by looking for yours, you can see the natural remedies recommended in treating them. Be cautious, and let your medical doctor know what you are taking. Even though these products are natural, they are derived from the same plants as most other drugs. You can suffer an overdose if you and your doctor are not fully informed.
3. How do you eat?
a) Experiment with food combinations
Many people suffering from bowel diseases have asked me what things are restricted from my diet. They name a long list of things they can no longer “stomach”. What I discovered is that it isn’t the foods that hurt me, so much as it is the way I eat them. For instance, I can’t drink a glass of juice in the morning without getting a bad bellyache. But I can drink the same juice later in the afternoon, along with some type of food. The same thing might happen to me with fruit, if I take it on an empty stomach, or eat it alone. But mixed with other foods the fruit doesn’t cause me pain. I find that I can’t eat all of one thing on my plate at once, without tempting a blockage, for instance all my vegetables or all my meat. Instead, I eat the foods alternately so that it is passing through my system in layers. You might find that you can’t tolerate cold cereal in the morning and need warm soup or porridge instead, or that you have to eat a carbohydrate along with your salad greens. Eating a salad before your main course is much harder on your digestive system. You should move your salad to the end of the meal. Experimentation is the only way to find out what works best for you … Different strokes. Don’t take what is written in a book as gospel. There might be many case studies to back up that people with Crohns should not eat refined flours and sugars (nobody should actually), but they are not something that exacerbate my Crohns, while some of the high fibre grains do. Only you can come up with the best combination for you. Sorry. You’ll have to use trial and error and probably pay a few times before you get it right.
b) Eat smaller meals
You will find if you are smart enough to cut back on your meals, that you are not going hungry. Our bodies work more efficiently on much less food than the average North American ingests in a day. In fact, the number of people who have reached obesity levels has doubled since 1980. Now one out of every four Canadians, and one out of every three American’s is labelled obese according to the medical standards of weight. If you are one of the 70% overweight or obese in North America, your excess fat may be a factor in succumbing to chronic disease. Replacing fat with muscle will help you use your food more efficiently and increase your sense of wellbeing. Eating smaller meals more often is a good start.
One of the mistakes you might make is to continue to eat the three squares a day that our parents taught us. Your sick body has been telling you for some time that this isn’t working – whatever chronic disease you have. I discovered, over much too much time, that by eating smaller helpings I was taking the strain off my digestive system and allowing it to rest. When we eat large meals, our body has to use up its resources focusing on digestion, so that it has fewer left to fight the disease. When the body is busy digesting a large dinner it is not able to get the necessary deep and relaxing sleep it needs to heal itself.
c) When to eat
With close monitoring you know what foods affect you in what ways, but have you learned how long it takes you to digest certain foods, how much gas they produce, how often you need to go to the bathroom? If you are continuing to work in a public setting, travel extensively or live with others, you will begin to make choices around when you eat. For example you may not eat for several hours before taking a flight or during the flight. You may insist on eating shortly after your flight lands. Or you might not eat after 8:00 p.m. because you know you will not sleep as well. You may choose not to eat gassy foods like broccoli, cauliflower and cabbage if you are in a group and know you will be there for several hours after eating. You might find that you like to be up several hours before eating breakfast, or that you wake starving and feel much better if you eat immediately. As you get to know your body’s needs and what maximizes your sense of well-being you become more independent of other people’s choices. It is important that you meet your own health needs, not wait to eat with a spouse who arrives home late from work every night, or go without a meal because a meeting is scheduled for that time.
4. How does exercise affect your wellbeing?
Exercise is one of the first things you drop, if you ever did any in the first place, when you are feeling unwell. This is the worse choice you can make. Your caregivers will emphasize the importance of movement to improving your condition. Even when I was at my lowest weight and weakness and couldn’t move I had a physiotherapist thumping on my chest to keep my lungs from filling with liquid.
Exercise is important for many reasons. If you want to be healthy you better include it in your lifestyle. If you want to stay healthy you better not slack off, and if you are suffering a chronic condition you better find a new way to fit exercise into your life. Why?
a) Exercise stimulates your metabolism
This especially affects the digestive process by increasing the efficiency of the absorption of nutrients and the elimination of toxins. Here come your antioxidants, there go your Free radicals. Already your immune system is getting a boost. Focus on aerobic exercise even if it is just walking fast while swinging arms out, around and above head.
b) Exercise increases flexibility
A constant source of pain to many is stiff joints caused by inflammation, but also lack of use. When something hurts we tend to leave it alone. Up to a certain point, this is good. The pain is your body signalling a part of you is hurt and to give it some attention. That means don’t ignore it, use some short term remedies like heat or cold to treat it, but don’t wrap it in cotton wool and tuck it away. By refusing to use stiff joints we are exacerbating the problem. Our muscles contract and cause even more pain over time. If you follow a daily routine of stretching exercises you can do a lot to alleviate the stiffness and the pain. Depending on your condition, stretches can be gentle to more rigorous. Once I began to recover, I started yoga. You work at your own pace. It is an excellent way to increase flexibility.
c) Exercise increases circulation
What better way to help heal your body than to get the blood flowing through it at a greater rate? You can provide a higher number of red cells to help fight your disease. Increased circulation also stimulates the growth of new cells to take the place of those that have died fighting the disease
d) Exercise strengthens your body
If you have suffered a condition that has kept you immobile for even a few days, there is a noticeable difference in the amount of strength you can bring to even a simple task like feeding yourself. By following a regime of simple, repetitive movements every day you can rebuild your strength. Yoga is also a great way to rebuild your deteriorated muscles. One of the muscles of the body that can be weakened by hypertension and heart disease is the heart. I haven’t met a doctor yet who hasn’t urged a heart patient to follow a program of re-building the strength of the heart through slowly increasing the distance of a daily walk. Often heart support groups have a walking or running program that provides the aerobic exercise necessary to make that all important muscle strong again.
e) Exercise increases your energy level
Increasing the flow of blood through your arteries and veins also increases the amount of oxygen the cells of the body are receiving. In no time you will feel an upswing in your energy level. You may even become addicted to your daily exercise because you feel much better after doing it.
f) Exercise increases your sense of wellbeing
Oxygen isn’t the only thing you’re getting as you swing down the road with a song on your lips. Your body is also being given the signal to send serotonin through your system. Serotonin is the chemical that makes you feel happy, great, super great. And exercise is one of the things that sends it rushing to your brains where you get your happy fix.
“Regular physical exercise has obvious physiological benefits. But it also has enormous benefits in psychological health; lessening of anxiety and tension, relief from depression, increase in self-esteem, buffer against stress, feelings of greater vitality, and improvement in intellectual functioning. With a program of regular exercise, you feel better, look better and do better! Those who think they have not time for bodily exercise will sooner or later have to find time for illness.” Edward Stanley, 15th Earl of Derby
5. How will having a chronic disease affect your social life?
Your social life will be affected and might never be the same again. After all, you’re not the same person as you were before the disease.
a) Changing Activities
Henry: When I’m run down I am more susceptible to Crohns. I used to be able to leave right after work Friday, drive most of the night, sleep two or three hours get up rock climb and drive back for work on Monday. I’m missing a lot of climbs now because I can’t do that anymore. I have to drive ahead a day, get a good night’s sleep and make sure I quit in time to get home for a good sleep before work. It separates me from some of the club members.
Henry changed the way he does this activity. He adjusted to meet his body’s needs without giving up something he loves. Often it is the things you love the most that are sacrificed first. You might stop bicycling or playing basketball in order to rest more. You may give up theatre or your bridge night so you can manage your domestic chores. Use some common sense here. If you are making choices around what to do with the little energy and endurance you can garner, pick the things that will further stimulate you and provide a positive outlet. Pay someone to do the domestics or get Home Care to come in. Use your limited energy to play Bridge or basketball. Either activity will increase the levels of serotonin and melatonin in your system. This will boost your appetite, your immune system and your will to get better.
However, be realistic, you may find yourself, like Henry, frustrated by your body’s refusal to cooperate with your choice to continue a favorite activity.
Henry: I go and climb and build up the necessary muscles to climb, then with the lost weight I lose muscle and can’t do the climbing. It’s a cycle. You’re too tired to go and exercise so you lose muscle, but I think my body is also using up the muscle tissue somehow.
Matthew: I’m very frustrated now. I love to run. It’s my exercise of choice. It’s the way I maintain my weight – better than any other type [of exercise]. But because of the problems with my shins, I can’t. I try riding my bike, lifting weights and massaging myself, but I have gained weight. I am at the heaviest I’ve ever been.
Both Matthew and Henry are seeing their bodies change because they are no longer able to do the activities they love that build strength and endurance. When my back injury kept me from exercising for so long I gained considerable weight and lost the majority of my upper body strength. I’m working to rebuild it, but like Henry and Matthew I have to face the reality of my condition and realize that fibromyalgia affecting my rotor cuffs will prevent me from doing the necessary exercises. So you slide forward, and slip back, but the important thing is you don’t give up.
When you just can’t do the activity you love put it behind you without regret. Feed yourself positive messages like, “It will be waiting when I’m ready.”, “This is just for the short term.” Focus on a new interest that will also stimulate you.
b) Changing friendships
Gail: I haven’t had a boyfriend since I found out I had Crohns. I don’t know if it’s my doing, my thinking about the disease or my personality. I’m shy and probably put my perception of myself onto them.
Did you drive them away, or did they just not care enough to hang in with you? Probably it’s a combination of both. When you aren’t feeling well you probably don’t want people around you, and don’t have the energy to meet their needs. You could also be a bore, constantly focused on your health, or a bear because your exhausted and in pain. Fair-weather friends will disappear.
You will make a conscious decision to drop some friends because they disappoint you. They may be nosy, insensitive, gossipy or tiring. Remember you are trying to remove the stressors in your life. Some people, whom you never saw as friends before, will become your friends because they bring you the things you do need like practical assistance, a listening ear, empathy, compassion, humor and kindness. Possibly, you connect because you discover you can support each other through a shared experience of the same disease. I found that dealing with my Crohns and hospitalization made me more sensitive and compassionate, so I saw people from a new angle and allowed people into my life that I would not have in the past.True friends will go through hell with you and often do. They feel your pain, your loss. They are as frustrated as you because they can’t make you better. They too go through the stages of grief in facing the loss of a friend, or the loss of the person you were before the disease. They too have to accept and adjust in order to grow along with you.
c) Changing how you contribute
As humans, we know that we benefit by giving to others. Many of you will have donated hours of your time to community events, your children’s interests or have been a productive part of a team at work. Now you have to bow out. Along with the feelings of guilt that you have to say no, that you’re not pulling your weight, that you’re letting them down, comes the loss of affirmation and good will giving generously has provided you in the past. Here is the proverbial closing of one door while another opens. Think of new ways you can contribute.
Sylvia: I call myself a professional volunteer. I loved my work in the community. When I got Lupus I had to start saying, “no” to volunteer positions I would have grabbed at before. When I’m not involved I feel lonely and left out. Now I qualify that I will do what I can for as long as I can. I take on tasks that can be done at home in the middle of the night when I can’t sleep. I still find ways to give, but they’re simpler and can be fit into my allowances of time, place and energy. Now I bake cookies and take them to my doctors, nurses and pharmacist. They love it when they see me walk into the clinic with a batch
6. How does having a chronic disease affect your financial life?
a) Changes in earning ability
- Financial status
Don’t despair. Often if you are forced to take time off, or you lose your job because of bad health, another door opens down the road. Although I was a stay at home mom, and my husband’s job financed us, the years I was most sick cost us a great deal more. I felt that I was dragging my poor husband into financial hell. Then, as I began to recover, my parish rector suggested I take on the part time job as parish secretary. I agreed and found myself earning a small income at the same time as I re-built lost skills and learned new ones. My income continued to increase over the next years.
You may be forced to become financially dependent on your workplace compensation, disability insurance or a spouse or child. It can be a frightening and humiliating time – especially for older men with paradigms that their worth is measured by how well they support their family.
Long term health problems will cause loss of income. You may be the major breadwinner in your family and now have to watch as your spouse takes on extra work to cover costs. You may lose a high-income salary through loss of job or forced retirement and see your lifestyle deteriorate. You may see your income decrease as you are limited by your health to part-time work.
Adam: When I was diagnosed with ischemic heart disease, I lost my medical as a commercial pilot and Air Traffic Controller, so I took a position as Training Supervisor in ATC and discovered strong administrative and teaching skills I never knew I had. I’m really enjoying this new work.
- New options
“I have taken up some new work in ministry
and know I feel better when I look beyond myself.” Daniel
Just the opposite can also occur. Daniel had retired as the Rector of a large Ontario parish and settled into what he thought would be a stress free lifestyle. Then he had a stroke. It forced him to make many lifestyle changes. He chose to quit smoking and drinking alcohol. He also made the choice to go back to work.
Ned: My heart attack forced a whole lifestyle change on me. I retired from my job and built a home in a small rural community. I walk several miles a day, enjoying nature and silence, something I never took time to do before the attack. Many of my neighbors ask if I will do building and gardening jobs they don’t know how to do, or don’t have the time to do. I love to work with my hands. This allows me to go at my own pace and enjoy the work instead of feeling pressured by it. Now I’m earning money doing something I love.
Often a major health problem is the only way your body can get you to hear it screaming “quit”. Have you had tunnel vision for years and been hanging on to a job you knew was too stressful, that gave you no joy, that didn’t meet any of your needs – except financial ones? Now is your chance to turn in a new direction. With recovery or maintenance, you are able to inch your way into work you truly want to do.
b) Changes in Spending
- New choices
With the increase in drugs and treatments for your disease, there is more pressure on the family income and choices have to be made against what isn’t bought so you can pay for your medications. It might be that new bike your son wanted. Instead of sinking under a mountain of guilt and self-flagellation, call a family meeting. Discuss finances and include your child in brainstorming ways you can meet the family’s needs. The gift of inclusion, respect and love you bring your child will be far more valuable than a bike. Who knows, you might decide to sell your golf clubs – you haven’t used them in years – to buy a second hand bike.
- Spending savings
The solution is in your hands. You must accept that your income is changing and pare down your lifestyle to match. There can be many plusses in simplifying your life. With less material property you have lower expenses, less maintenance and servicing, less care, lower insurance costs, less room needed for storage and a lot more freedom. Try disposing of the extra car, credit cards and the clothes, toys and furniture you haven’t used for years. You will feel so much lighter. You will be more aware of what is truly important. There are a lot of plusses in having changes forced on you by chronic conditions. This is one of them.
You see your financial security being eroded as you make inroads into your savings to make-up for lost income and added expenses. This is a frightening time for someone who has a poverty mentality. You believe that there will never be enough. Yet, those savings are already there, in place, to cover these unexpected costs. Isn’t there enough already? If you have faith, you will be more able to recognize the abundance in your life by using more efficiently what you have, recognizing new sources and being open to the gifts of others. A strong person will allow others the opportunity to give and feel good about it, instead of letting pride get in the way.
7. How does having a chronic disease affect your personal life?
a) Changes in intimacy
By intimacy, I am talking about the special closeness between spouses or partners, both physical and emotional. Often the need for change is harder on your partner than on you. You’re probably feeling so unwell you’re not interested anyway. However, there is generally a backlash of guilt, sorrow or anger around your disinclination to perform. You may feel you are letting your partner down right when he or she is being extra supportive. Some of the people I interviewed shared that they got angry when their partners pressured them for sex, when it was obvious they felt unwell. Or they feel pressured by a partner who wants to know every thought in their head and each feeling as they experience it. Some partners are concerned about hurting you with their lovemaking and so back off. You may accept this consideration with relief; but if communication is poor, you might feel you are now repugnant to your partner, or he or she doesn’t really care.After all my surgeries I felt very self-conscious about my body. When we resumed our sex life, I made it very difficult for my husband, as I brought my low self-esteem to bed and read into every one of his words and actions or lack thereof some kind of indication that I was no longer desirable. If you are trying to be intimate when you are hurting, you might utter a continuous stream of “Ouch, not there, don’t touch that, no, and can you just wait for a minute?” that will frustrate your partner (unless this sounds like your normal sex talk). After several sessions of too much negativity, direction and concern for inflicting pain or causing harm, you will pretty much have your partner brain washed not to come near you again. Of course, this is not what you want. So, be careful how you dialogue and keep the communication lines open. It might be a good idea to discuss your concerns and how to protect body parts during a pre-sex discussion, so your partner is better prepared and you avoid sounding like a drill sergeant when you assume the position. If a partner gets too frustrated, angry, hurt, confused or turned-off by your new approach to sex, he or she might begin to withdraw intimacy of any kind. You may feel like you are being punished for something that isn’t your fault. You long for the touches, hugs, kisses and tussles that were a normal part of your relationship. The loss of them makes you feel even more alone and drops your self-esteem another notch. Again clear communication of your needs and desire to meet your mate’s is necessary at this point.
“I’m not able to be as close and intimate
with my husband and meet his needs.” Sylvia
Adam: Before her surgeries, my wife was raunchy and ready to try new things. When she recovered, she was conservative in her lovemaking, because she was embarrassed about her scars and pouch. It made me frustrated and angry because there was after that a bond that had been broken between us, a chasm that could never be crossed. The intimacy has never been restored in the same joyful, relaxed way it was before.
Like Adam’s wife, I had all sorts of concerns around body image and low self-esteem. I wish I’d been able to talk to the people who shared their thoughts in this book years later. If my husband could have communicated that it was not how I looked that kept him interested, but the enthusiasm I brought to our lovemaking, I believe I would have been able to put my false impression of how big a part looks played in our sex life aside and given him what he desired. I urge you not to let embarrassment or timidity keep you from discussing this subject thoroughly with your spouse or partner, before you get into bed together, so you are both clear about what really matters. When you are coping well with your disease you desire intimacy with your spouse or partner. Face it, all any of us, healthy or ill want is to know we are loved.
b) Changing your role in the home
Henry: When I come home from work, or we are expecting friends and there is a mess everywhere it drives me crazy. Martha is working too, so it is incumbent on me to do my share. I do more because it matters to me. I try not to get upset, but I have to clean it up. I get angry when I see a huge mess of things thrown around that should have been picked up. It triggers my Crohns.
It is obvious that if Henry is going to keep his Crohns under control he and Martha are going to have to make a compromise about their roles in the home. Henry may shift his perfectionist tendencies into low gear and Martha might try harder to pick up after herself. Both will have to set rules and consequences and follow through in getting their sons to clean up after themselves. With less mess and lowered expectations, Henry will find coming home less of a stressor.
You can make your condition worse by worrying about letting down your spouse or family with regards to your role in the house. Again, the best coping skill is to accept and adjust. I couldn’t carry my share of the responsibility for our home and family for many years. We had to say no to some things because of the expense of my medical bills. I could not play an active part in raising our children during their years from 6-12. I needed a housekeeper because I was too weak to clean my house. My husband and kids had to take over some of the meal preparation.
“Know what you can’t do and what you can do and work
in between them somewhere. It changes daily.” Robert
Your family’s priority is your well-being, so let your high standards slide in order to give them the gift of a healthier you. Most often you’re a temporary slouch and can resume your responsibilities later, or break the tasks into smaller pieces so you can do them over time.
8. How does having a chronic disease affect your plans to travel?
Matthew: I had to eliminate camping from my life, because I had to carry too much medication and more food. It made it difficult. I love to travel and have been planning to do more, but it is a big hassle with diabetes. It’s difficult to access out of country doctors who know enough to treat you properly. I always take notes from my doctor with me. They also have to give me notes to get syringes if I run out. If I run out of my drugs while travelling, I have to go without. In many countries, you just can’t access these drugs so you better not run out. Sometimes I’ve had to have them courier it to me, which is expensive. When I travel, I have to have all my drugs with me and prescription for my syringes. Often I need to have papers proving I have diabetes, so they don’t see my syringes and think I am doing drugs.
a) Packing light
I have to have supplies with me everywhere I go, which means I have to carry a purse, attaché or backpack. It’s a little thing compared to being dependant on a wheelchair for mobilization, but always having a hand and part of your mind taken up with the necessity of lugging medicines and supplies around also causes some physical limitation. The freedom to move freely and quickly from one location to another, one activity to another is now gone. If the seal on my pouch starts to leak, it is time consuming to get my unique supplies in another city, difficult in a small town and impossible in some countries. When you travel take drugs with you that you’re not necessarily on at that time, but that you might need if you have a crisis.
“I work hard at not letting my chronic condition affect my lifestyle.” Jocelyn
When you are already suffering low energy levels and possibly pain from your chronic disease, having to worry about the details of paperwork and packing for your medication and supplies is almost enough to put you off taking the trip. Don’t let it. With enough experience, this will become as easy as getting on the right train in a foreign country. Travel lifts you beyond your body’s weaknesses and stimulates your mind.
b) Traveling alone
There’s a scary thought, particularly if you’ve just spent weeks in hospital and are weakened by your disease. Now you may have to go back to traveling for work or personal reasons. This might be the only way you get to see your new granddaughter. Remember that your confidence level is going to need bolstering. You need some positive self-talk. “I can do this, I did it before.” “It’s only a short trip and then the family will be there to help.” You also need a practical plan. There are several things you can do to make it easier. Eliminate driving yourself to the airport if you are flying. You don’t need the hassle. Ask a friend or hire a taxi, knowing you’ll be dropped off as near to the ticket counter as possible. Take only a lightweight bag, holding your essentials on the plane, bus, ferry. Check all the rest of your luggage, even if it is more time consuming. You don’t want to have to carry it while you wait and walk long distances to gates in busy airports, shipping or bus terminals. Again don’t stint on cost if getting a limousine will be faster, safer and cleaner than a taxi. Don’t be reluctant to accept help from a friend or family member who offers to pick you up. Take advantage of moving walkways, escalators and elevators. You can push yourself harder on familiar ground after a good rest – travelling is not the time to test your endurance.
c) Traveling with others
Travel will never be as straightforward again. There are considerations of disabilities, energy levels, food constraints, bathroom accessibility. A person without chronic disease has no idea of the amount of time and energy you put into meeting these needs. Because of them, traveling with others becomes even harder. It means there are more people to consider and more people affected by your needs.
Carrie: I still love to go on holidays. We love to travel with my parents. But sometimes I feel it is a big ordeal and that I am putting them out. I know it is in my head, not the way they think. I have to work to get it out of my head. Because of the weakness in my legs I spend most of my time by the pool.
Already concerned because health has placed a greater burden on your spouse, partner and children, you do not want to eliminate the joys of travel from all their lives. When I was hospitalized, or just too sick to go on our annual ski trip, I urged my husband to take our two children and have the experience without me. They did go, but all of them said it did affect their enjoyment, knowing I was not with them or having fun. This situation forces you to find a balance between taking responsibility for your spouse’s pleasure in travel and pushing yourself to go, or staying home to preserve your health while knowing you are disappointing your family.
Jocelyn: Would I let the fibromyalgia stop me from traveling? No.If we didn’t go it would impact on my spouse. But the bottom line is it is easier not to have to do anything, it’s easier not to go. My attitude would stop me from going, or make me not want to go before the physical part of the disease did.
- Take a hard look at how your illness is affecting your work and vice versa. Then come up with a plan that is a compromise between harming yourself irrevocably, and not losing your job.
- Call a family counsel to discuss the changes in your financial status and brainstorm ways you can: a) stretch your dollars b) eliminate costs
- Discuss with your partner and children new ways you can socialize and new activities you can take up. Get started doing it.
- Make a list of all of your prescriptions and over the counter drugs. Check it against the country you will be entering, to see which drugs you can access in that country.
- Find a pill divider that allows you to ration out your daily pills and have them with you at all times, when in your own country.
- When travelling outside your country, ask your pharmacist for a printed list of your medications, and be sure each is bottled separately and clearly labelled.
- Begin to plan your next trip now. If you are incapacitated at the moment, believe it won’t last. Probably imaging yourself on this trip will feed positive messages of healing to your body.
Now that you have accepted your lifestyle is going to change along with you, let us look at who is available to support you through these changes.
 The Fibromyalgia Help Book; Jenny Fransen and I. Jon Russell; Smith House Press; 1996