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▣ 6.1 Introduction.
⧈ 6.1.1 Many factors shape the psychological impact of having IBM.
⧈ 6.1.2 Many aspects of life are affected.
⧈ 6.1.3 Personal, Family, Medical, Social and Caregivers.
⧈ 6.1.4 Information.
▣ 6.2 Three phases we all share.
⧈ 6.2.1 Before diagnosis.
⧈ 6.2.2 Diagnosis.
⧈ 6.2.3 After diagnosis.
▣ 6.3 The general impacts of IBM.
⧈ 6.3.1 Abilities and opportunities.
⧈ 6.3.2 Life challenges.
⧈ 6.3.3 Lifestyle choices.
⧈ 6.3.4 Fatigue.
▣ 6.4 The psychological impacts of IBM.
⧈ 6.4.1 Anxiety.
⧈ 6.4.2 Stress management.
⧈ 6.4.3 Emotions.
⧈ 6.4.4 Depression.
⧈ 6.4.5 Psychological stages.
⧈ 6.4.6 Denial.
⧈ 6.4.7 Blame.
⧈ 6.4.8 Acceptance.
⧈ 6.4.9 Perspective.
⧈ 6.4.10 Suicide.
⧈ 6.4.11 End-of-life.
⧈ 6.4.12 Compassion.
▣ 6.5 Counseling.
▣ 6.1 Introduction.
In this section, we will discuss the impact that IBM has on our psychology and the effect our psychology has on coping and dealing with IBM. We will emphasize self-awareness because if we are aware of our attitude, then we can examine it, and if there are aspects that we don't like, then it allows us to make changes. Change can be difficult, especially for older folks who are often "set in their ways." However, our attitude and how we see our situation will make a big difference in how well we cope. If we have a negative attitude, then coping will be more difficult. IBM challenges us to change, to cope, and the better, more flexible we can be to adapt, the happier we will be in the long run. No one asked for this challenging illness, but how we deal with it and whether or not we can make the most of our life is, at least partly, in our hands.
Summary: There is one thing I can say with certainty. IBM will challenge and change you as it progresses. These changes are not within our control, but how we deal with them and see ourselves as we move forward is primarily up to us. My purpose here is to help you become more aware of the psychological impacts of IBM so that you can make the very best of your situation.
How can I change? I don't know anything about psychology! Whether you know it or not, you can make a great impact on how you feel and think. This begins with awareness of how you are feeling and thinking to begin with. Most people are not very aware of their day-to-day feelings, thoughts, and reactions. Becoming aware is the first step that allows you to evaluate yourself critically. Are you overly negative? Pessimistic? Do you have unrealistic expectations? All these things can be examined, and if you find the need to change, then you can think about what changes you need to make. Having IBM will likely change your goals and priorities in life. Old goals may have to yield to new ones. As you begin to get used to the idea that you have IBM you will go through many ups and downs both in terms of your emotions and your thinking. Over time how you see yourself may change.
First, what do I mean by psychology? We can think of psychology as the combination of how we think, feel, and behave. Who we are reflects our psychology—our deep values and attitudes that together form our unique personality. Who we are develops over our lifetime, and usually, by the time we are in adulthood, we have a good sense of who we are. IBM challenges that old self in many ways. There are many common aspects to IBM. However, each case presents its unique features and impacts, thus, how it challenges each of us and how each of us responds to the challenges, will vary widely. As well, the impact of IBM will be influenced by how we see its effects and how we cope with them. Therefore, this section will be quite general, and not everything will apply to you; as well, there may be aspects you experience that I don't cover.
So, I just change my attitude, and everything will be great—that sounds easy! Unfortunately no. Who we are, including our attitude, has formed over our lifetime, and we can think of our psychology as a big puzzle with many different pieces that all fit together to paint the picture of who we are. I emphasize that change is possible; that does not mean it is easy.
► IBM will challenge and change our old view of ourselves.
► The impact of IBM is unique for each of us.
► People uniquely experience their illness.
► People uniquely react to their condition.
► People learn how to cope uniquely.
► How we see IBM will affect how it impacts our lives.
► We need to make the best of those aspects we do control—one major aspect is our attitude.
► A major first step in wrestling with our attitude is self-awareness.
⧈ 6.1.1 Many factors shape the psychological impact of having IBM.
Here are a few:
► When did symptoms emerge?
► How does it currently affect you physically?
► What impact does it currently have on your mobility?
► What impact does it currently have on your lifestyle?
► What impact does it have on your overall health?
► How fast does it progress in you?
► What supports do you have?—Family, medical team, spiritual, psychological, other?
► How do you see your illness, your life now?—Depressed, hopeless, realistic, optimistic, stoic?
⧈ 6.1.2 Many aspects of life are affected.
What isn't affected by IBM? Here are some of the major aspects involved:
► How we now see ourselves and how we see our life (our thinking, attitudes, and our feelings)
► Independence (mobility / movement issues)
► Primary Relationships (parents / partner / children)
► Social Relations (friends / family / co-workers)
► Lifestyle (our day-to-day life routine)
► School and educational choices
► Finances: having a disability is expensive
► Career (job changes, long-term disability)
► Home and environment (house / car / etc.)
► Caregivers (Family members / agency [come into the home] / live in [employees who stay in your home])
⧈ 6.1.3 Personal, Family, Medical, Social and Caregivers.
⚀ 18.104.22.168 Personal: A private issue.
► We alone must face up to the fact that we are ill; that our life and lifestyle will likely change.
► Whether you are alone or have family support, this is a personal and private process.
► Others can help us, but ultimately, we must "come to grips with it" on our terms.
► How we see our illness is critical to our subsequent attitude, which is essential to how we will react and cope over the long term.
► Coming to grips is a process that occurs in bits and pieces over time.
⚀ 22.214.171.124 Family: As you go, so they go.
► Families are often sources of strength for us.
► Our illness/symptoms directly impact those who love us: spouses, parents and children.
► Spouses often reflect the factors mentioned here, but their reactions often go unrecognized.
► The "patient" and the family should be seen as a unit; neither exists in isolation from the other.
⚀ 126.96.36.199 But what if I'm alone?
► Many of us will find ourselves dealing with IBM alone, with no spouse or family support.
► Being alone will make it harder to stay positive and to be motivated to look after yourself.
► It's easy to get stuck in negative thinking and give up when alone.
► When alone, reaching out to other IBM patients in support groups can be critical support.
► Your doctors need to know you are alone and how you feel.
⚀ 188.8.131.52 Family: Spouse acting as a caregiver.
► Spouses often must take on new caregiver roles: a unique, complex and very demanding task.
► As your function becomes limited, your spouse must do more: but they can only do so much.
► If your spouse is your primary caregiver, the extra tasks may eventually become too much.
► Burnout is physical and psychological exhaustion.
► Recognition and prevention of burnout is critical.
► Once burnout occurs, it is tough to recover.
► Good communication is vital.
► You both need to plan for the long term, often, eventually, needing to bring in extra help.
► Built-in, regular, rest periods for spousal caregivers need to be scheduled.
⚀ 184.108.40.206 The medical aspect.
► Our medical team is a major, ongoing part of coping; finding the right team for you is critical.
► The team's care, compassion, and advice are vital, especially in "untreatable" conditions like IBM.
► Feeling that the team is there and understands is an essential support for the patient.
► Doctors "know" about illnesses but don't have the "wisdom" gained from experiencing them.
► Doctor's tools: caring, compassion and science.
► Doctors help give us a context for our illness—the "big picture."
⚀ 220.127.116.11 Social: Dealing with others.
► "But you don't look SICK."
► It is hard for our extended family, friends, and co-workers to understand our illness.
► IBM is not obvious to others—not like a broken leg.
► Our illness may impact others in unexpected ways—friends may leave.
► We need to educate others about IBM.
► We have to tell "our story" over and over.
► In telling others, we also help ourselves cope and face reality.
► Overly "helpful" friends may be a problem: everyone seems to have advice or a "solution."
⧈ 6.1.4 Information and educating yourself about IBM.
⚀ 18.104.22.168 Types of information.
► Personal/Family: Many types of information can help us develop insight and the strength we need to face and manage this illness.
► Medical: Medicine is like a foreign language.
⇒⇒ How much do we need to learn to "get by" to understand and talk to the doctor about the diagnosis and our management options?
► Social: "What's wrong with you?"
► Information helps us effectively give others a context to understand our situation and the unique challenges we face.
⚀ 22.214.171.124 Levels of information.
► How much do you need to know?
► Set your balance: don't be afraid to learn, but don't feel forced to learn more than you want to.
► General information on coping with a chronic illness, disability, and living a good life ("self-help").
► Specific information about IBM.
⇒⇒ Information written for a general audience.
⇒⇒ Experts write information; very specific and complex.
► A wide variety of all types and levels of information is readily available today from: Patient groups, our medical team, the Internet, books, and various not-for-profit associations.
⚀ 126.96.36.199 Information and support.
► Seek out an IBM support group.
► Most people struggling with IBM face many of the same challenges as you do.
► Talk to others about their experiences and their challenges. How THEY cope may give you ideas about how YOU can manage (and inspire you).
► Other people are a great source of information, practical advice, and emotional support. Don't be afraid to talk to people about IBM.
► Example—Inclusion Body Myositis Support and Understanding (Private Facebook group): https://www.facebook.com/groups/inclusionbodymyositis
► The best approach is a balance of information we learn and our practical experiences.
► Coping involves much practical experience we learn from living with IBM.
► Practical knowledge we can learn from other people we talk to is also essential.
► Remember: Take it one step at a time and take your time, "learn as you live."
▣ 6.2 Three phases we all share.
We all go through three primary phases, and each step has characteristic psychological challenges. The first phase begins when we notice symptoms—we see that there is something wrong. Often, this phase is prolonged because the signs come on very slowly and are mild at first. Thus, we don't immediately seek a doctor. Because we don't know what's wrong, this phase is characterized by anxiety, uncertainty, and ambivalence. Ambivalence means that we go back and forth in our mind from feeling something really serious is wrong (anxiety) to the other extreme; we are okay and just making too much out of our symptoms. In this initial phase of uncertainty it's easy to catastrophize and to think the worst (this seems like a natural human tendency for many people).
The second phase begins when we see a doctor, and the diagnostic process begins. In IBM, diagnosis is very challenging; on average, it takes five years to arrive at an accurate diagnosis. This phase involves a lot of frustration and requires a lot of patience.
The third phase is after a diagnosis is made, and we begin the journey of learning about and coping with IBM. At first, I think that most people experience shock at finding out they have IBM. Then, a long process of learning and adapting needs to begin. Many people tend to initially react using denial. Depression is also a natural and common feature most people have to deal with, especially in the early days. This begins a new and challenging task—to come to a new vision of how we see ourselves—to see ourselves as having IBM and with the expectation that our lives will need to adjust as IBM progresses. This involves a lot of "soul-searching" and slow adaptations—both mental and physical. One of the most positive aspects of having IBM is that it is a very slowly progressing illness and generally this gives us time to come to grips and to give us strategies for dealing with the various impacts of IBM.
I believe that once IBM is confirmed, practical information helps us cope. Although this information may initially be upsetting (discovering IBM leads to the loss of mobility), realistic expectations are very important. As well, we will have to assume the role of "IBM expert and educator:" for our families, friends and coworkers, and in many cases, for our doctors. Because IBM is exceptionally rare, most general practitioners will not have any experience with, or knowledge about, the illness.
⧈ 6.2.1 Before diagnosis.
⚀ 188.8.131.52 What could that be from?
► As symptoms slowly develop, we see that something is wrong.
► A few common reactions during this period:
⇒⇒ Denial: ignore problems; pretend nothing is wrong.
⇒⇒ Uncertainty creates feelings of fear and anxiety.
⇒⇒ Catastrophize: we imagine the WORST it could be.
⇒⇒ Guilt: "I must have done something to cause this."
⇒⇒ Superstition: "If I just do this, it will go away."
► Crisis: feelings, fears, and anxiety can build up and burst into crisis—"yep, I'm having a meltdown."
► Loved ones: You must be aware of your family's feelings, fears, and anxieties over your health.
⚀ 184.108.40.206 "Everything's O.K. vs. I'm sick."
► The phase before a diagnosis is commonly a period of ambivalence:
⇒⇒ We go back and forth in our imagination from: "I'm O.K." to "OH MY GOD, I REALLY AM SICK."
⇒⇒ This is often a frozen period: we feel "stuck" and don't seek help immediately.
► "Sometimes it is better not to know" versus "Whatever it is, I have to face it."
► It takes much courage to end this phase by going to the doctor(s) to find out what's wrong.
► The medical system is complex and hard to deal with, especially with a rare and "mysterious" illness.
⧈ 6.2.2 Diagnosis.
⚀ Diagnosis is a time of frustration and confusion.
► Experience has shown an IBM diagnosis is not a straightforward and smooth process.
► All muscle diseases are challenging to diagnose.
► Usually a long, frustrating, and difficult process.
⚀ 220.127.116.11 "Diagnosis is not easy."
► IBM is well known for being hard to diagnose. Many disorders have very similar early symptoms, and many people are initially misdiagnosed (often seen as polymyositis).
► There are two significant aspects to a diagnosis:
⇒⇒ Clinical: Doctors examine us and ask questions.
⇒⇒ Tests: Blood tests, special tests, biopsy, etc.
► When facing any major illness, it is wise to get a second opinion on the clinical aspects and the test results.
⚀ 18.104.22.168 "Different doctors."
► Patients with IBM often must see a confusing series of doctors.
► Most patients start with their family doctor and are referred to a specialist.
► Some patients will see a rheumatologist, some will be referred to a neurologist, and many will see both.
► Different types of doctors will have different approaches, which can be confusing.
► Often, a patient is sent to a specialized clinic or hospital for diagnosis and testing.
► Some clinics also research IBM.
► On average, it takes five years to get a diagnosis.
⚀ 22.214.171.124 "Differing opinions."
► Seeing multiple doctors can be frustrating: each may have a different idea about what's wrong and what to do about it.
► Different types of doctors will approach us from different perspectives based on their training.
► Two doctors may make a different diagnosis, often with the same confidence.
► It can be challenging to deal with different opinions and recommendations.
► Talking to other IBM patients about their journey may help you navigate yours.
⚀ 126.96.36.199 The need to be heard.
► "I'm not crazy . . . and I'm not just lazy."
► We use this quote for a reason: because sometimes people are initially "put off" by doctors as "imagining things" as "being lazy" or as simply "getting old."
► You know your symptoms and when something is wrong, no matter how strange it sounds.
► Sometimes, describing precisely what's wrong is hard.
► Your symptoms have come on slowly and usually have changed as time went on—it may be difficult to draw a clear picture.
⚀ 188.8.131.52 Diagnostic frustrations.
► Diagnosis is a complex mixture of evidence and the doctor's experience, attitudes, and intuition.
► It seems that many people encounter various "roadblocks" in getting their diagnosis.
► IBM (as are muscle diseases in general) are rare and initially doctors may be sceptical of the "story we tell."
► Try not to get emotional: always focus on the facts.
► Don't take setbacks personally: try to be professional.
► Consistently return attention to the questions, evidence, and issues important in weighing your particular case.
► Many IBM patients go through similar experiences—talking to them will help you deal with frustrations and empower you to get an accurate diagnosis.
⚀ 184.108.40.206 Hard diagnostic choices.
► You may have to make choices in diagnosis.
► Should I ask to have a second opinion?
► Should I have that extra expensive test done?
► What if the Doctor suggests I try a treatment? Management options? Try a clinical trial?
► Doctors will summarize information and choices; however, the patient must make the final decisions.
► We may need a "crash course" on IBM to be able to know what to do.
► We often need help understanding some of these choices.
⧈ 6.2.3 After diagnosis.
► We need an ongoing and open relationship with our medical team after our initial diagnostic phase is over.
► IBM is dynamic: as it progresses, things change.
► We need to continue to monitor our symptoms as they unfold with the following questions in mind:
⇒⇒ Was the initial diagnosis correct?
⇒⇒ Emerging complications: detected and dealt with?
⇒⇒ New tests may come out; do they apply to me?
⇒⇒ Ongoing implications for physical rehabilitation?
⇒⇒ Ongoing practical occupational and home care advice?
⇒⇒ What equipment do I need today? Tomorrow?
⇒⇒ An individually designed exercise program?
⚀ 220.127.116.11 Your role as self-advocate.
► You are the constant element in your case.
► You must be a firm and consistent advocate for yourself.
► An IBM diagnosis has many implications:
⇒⇒ People need time for the diagnosis to "sink in."
⇒⇒ People need to take their time to learn about the illness.
⇒⇒ People need to think about the implications of this illness for themselves and their families and, if necessary, return to the doctor to ask questions.
► If you are alone and without family, being a self-advocate is more challenging but may be more critical.
⚀ 18.104.22.168 Self-education.
► We need to "let the doctor be the expert," however, a significant trend in medicine is patient involvement—we need to understand enough to help us make informed decisions about our care based on the evidence (another trend).
► Many people now believe that patients should learn all they can learn about IBM.
► Getting involved with other IBM patients for information, ideas, and support is usually very helpful.
► Participating in support groups is an empowering way to help other IBM patients, and helping others also makes us feel good.
⚀ 22.214.171.124 Treatment dilemmas.
► Despite the advances of "modern science," IBM is not well understood, and the consensus is that no medical treatment is effective.
► "It doesn't matter; there's no treatment anyway" is not a productive attitude.
► We can't control how IBM will unfold, we can't control the fact there is no medication, but we can control our attitude.
► No "treatment" does not mean no help—we need advice and support from our medical team as we learn to cope and adapt to our situation, often with special equipment and extra help.
► Today, specialized exercise programs, individualized for each patient are recommended.
► Both the patient and the doctor need to deal with these issues, and both require a positive attitude of "compassionate and supportive realism."
If you are not satisfied with your current situation or how things are going, you must be willing to step outside your comfort zone and try something new or different that's within your current physical capabilities with your carepartner, physical therapist, fitness trainer, or doctor by your side to ensure you can do it SAFELY. Joe Sanchez
⚀ 126.96.36.199 Bad medicine, bad advice.
► We need to use sound, logical judgment in deciding what to do.
► Because there is no recognized medication to treat IBM, many of us will feel desperate to try something.
► This makes us very vulnerable to getting involved in all kinds of "miracle cures," diets, supplements, etc.
► People may give us advice based on their beliefs and stories they've heard, but not on actual evidence.
► The best path is following medical advice: a healthy diet and lifestyle, avoiding "quack" remedies, and a participate in a supervised exercise program.
⚀ 188.8.131.52 Several key areas.
□ 184.108.40.206.1 IBM and falling.
► Most patients with IBM will experience falls.
► IBM makes the muscles in the legs unstable.
► Falls occur unexpectedly – you hit the ground instantly and lose balance, or your legs give out.
► Many are injured from falls, some seriously.
► Fall prevention is critical but complex.
► Keys: Awareness, Attention, Attitude.
⇒⇒ Like any complication, we must be aware of the danger.
⇒⇒ Must be open to using a brace, cane, walker, or wheelchair.
► Must pay close attention—in the bathroom, bedroom, on uneven ground, stairs: prevention is better than an ER visit.
► Attitude is critical to awareness and attention.
⇒⇒ We see many broken bones from "false pride" and denial.
□ 220.127.116.11.2 IBM and pain.
► Medical papers do not mention pain in IBM.
► Many patients with IBM report having pain.
► As IBM affects muscle, it becomes brittle and inflexible: stretching may cause pain.
► Pressure on the muscle may cause pain.
► Some patients report constant muscle pain.
► As IBM progresses, the flexibility and range of motion of the limbs are reduced; pain may result.
► Being in one position for a long time may cause pain, for example, when sitting or sleeping.
□ 18.104.22.168.3 Personal resources.
► Many people "sell themselves short."
► We often have more resources than we think.
► Both inner resources and resources within our network—family, medical team, caregivers, etc.
► The most critical resources are:
⇒⇒ Ourselves, our families.
⇒⇒ Our intelligence, common sense, being able to have a sense of humor, and personality.
► I am still me (albeit me with IBM):
► I have not lost myself and become my illness.
► Remember: Our resources are greatly influenced by our attitude—how we see life.
□ 22.214.171.124.4 Adapting to change.
► The impact of change depends significantly on how we look at change.
► Change often presents growth opportunities.
► We need to look for the positive "silver lining."
► We need to see what is under our control in life.
► We need to adapt to what we can't change.
► Try to see change as a learning opportunity.
► Adapting to change is an ongoing part of life, especially as people age and deal with IBM.
Don't allow what you no longer can do safely interfere with you improving what you still can do safely or keep you from learning how to do things differently that takes less energy. Joe Sanchez
□ 126.96.36.199.5 Doors close, others open.
► As people get older, everyone's life changes.
► As our health changes, we must curtail some of our activities.
► For each activity you have cut back on, try to find a new one to begin.
► Our lives will change more than most, so we must focus on coping with changes.
► We need to (and can) become experts at coping and adapting.
□ 188.8.131.52.6 The big picture.
► We ended up having a bizarre and rare disease with no known cause and no available treatment.
► We had no control over getting this disease.
► We have control over how we see ourselves and deal with the impacts of IBM.
► IBM causes a slow but sure decline in our ability to move and to do things: a very challenging and constantly changing situation.
► Our happiness will depend on how well we can deal with and adapt to these changes.
▣ 6.3 The general impacts of IBM.
IBM falls into a general category of diseases that ultimately impair motion and the body's ability to function normally. All of these diseases share in common that they disrupt the normal activities we have come to take for granted. IBM is also a challenging illness because it is progressive. Its impact is minor, to begin with, but as the disease progresses, the impacts accumulate and increase. Depending upon the specific situation, the impairment may also be minor or major, and the degree of impairment at any given time makes a great difference to the patient.
⧈ 6.3.1 Abilities and opportunities.
► Who is "able"? Who is "disabled"? Who decides?
► Two aspects:
⇒⇒ How others see us (we can't control this),
⇒⇒ How we see ourselves (we can control this).
► Many of us end up very different but still very able.
► Don't be too quick to put yourself into the "disabled category."
► With IBM, abilities will change; however, with the right attitude, we can still be very happy and able individuals.
There are three main aspects to understand when we talk about abilities. The first involves exactly how IBM will impact us—as we explore below, we have no control over this. The second aspect involves how other people see us; again, we have no control over this aspect. Finally, there is the aspect of how we see ourselves, and we have significant over this.
In many cases, people have no understanding of mobility issues and can be very cruel in how they see us and what they say.
Once I was sitting in my power wheelchair in a slow-moving line. I heard someone in the back say, "Oh, there's a cripple in the line holding things up."
We cannot be responsible for the ignorance of others. On the other hand, we can control how we see ourselves. You may be very different than you were before, but, as in my case, you may still be very able to do things—different things, perhaps, but still important things.
How you see yourself is crucial, and you need to know how you define your abilities. Many people focus on what they have lost, not what they can still do. If you only focus on what you can't do, you will lose sight of what you can. Abilities change as we age. Abilities change as IBM weakens our muscles, but we can still be happy and make a positive contribution with the right attitude and a focus on what we can do.
It is important to remember that when things change some doors will close. You may not be able to stop doors from closing, but when they do, look for new doors to open and new things you can do. For each activity you must cut back on, look for a new one to begin.
Our lives will change more than the average person, and it is a challenge for us to cope with change and keep moving forward, even if that is not on the original path we had in mind for ourselves. We need to become experts at changing, adapting, and coping.
I was working half-time for about a year while waiting for my diagnosis. When I got my diagnosis, I told my supervisor. I was on long-term disability illness the next day. I was shocked, and my overall feeling was, "What am I going to do now?" I was surprised because I immediately started volunteering and have never been busier over the past twenty years since that day. I've looked for opportunities and have been able to take them and give my life a new meaning—one that I hadn't anticipated but one that has become important for me.
In summary, we must see change as a series of new opportunities. We need to see opportunities as chances to learn and contribute new things. What you cannot control, try to adapt to. Be clear about the things you cannot change versus those under your control. Once again, our attitude plays a critical role in adapting, seeing our abilities, and discovering and seizing new opportunities.
⧈ 6.3.2 Life challenges.
There is no one impact of IBM; therefore, the life challenges that IBM presents are particular and unique to each person who has IBM. But, there is no question that as function and abilities are impacted, it becomes harder to juggle doing everyday tasks. When it's easy to do things, we often don't plan very well and do things one at a time. For example, we will take three trips to get the groceries, pick up the grandkids in school, and mail that parcel. Impacted ability calls for multitasking. This means doing two or more things (tasks) at once. To do this effectively we must adapt and make ourselves more efficient, disciplined, and organized. The great benefit of this advanced planning and doing things together is that it saves time and energy. It takes concentration and mental discipline to multitask. It also takes practice. Here, I will talk about multitasking to help deal with IBM.
Having IBM makes doing ordinary things difficult. Think about running to the post office to mail that parcel. What used to take you 15 minutes may now take you an hour. Planning and prioritizing tasks and grouping things together makes life a lot easier. For example, when buying groceries, plan ahead and make a list of things you need and only go to the store twice a week.
Set yourself realistic goals and time frames. You can't do ten things a day anymore. Unfortunately, you may have to limit yourself to one or two essential things every day. Why? With IBM, it boils down to a question of practicality and energy. Doing things with IBM takes much more energy, and you have to pace yourself—using your energy tires you out. Add in extra time based on your level of mobility. Add in spare time to get organized and dressed appropriately to go out. Add time for your helpers to get ready. When things take additional time, it's essential to reduce redundancy. You don't have time to go out twice, so you have to make one trip count.
Great planning is an excellent defense against the stress and chaos of limited movement. Plan both your days and your week ahead. If you can't get it done today, don't get stressed—have it in your mind to be flexible, and what you can't do today, add to your next trip.
Being organized and multitasking will help. But expectations are also critically important. Don't expect to do things the way you used to. Expect that it will take a lot longer and take a lot more effort to do less. Here are a few things that IBM specifically challenges you to juggle. Getting up and going to bed become projects. Getting in and out of the bathroom or shower needs a routine with enough time allotted to it. Eating (or being fed) now takes an hour.
Things take longer, but they are also more challenging to accomplish. In many cases, to do something you have to explain it to the person helping you, which can be challenging both for you and them. You lose significant control when you become dependent upon others. You often rely on others to get things for you and to put things away—you may have no idea where they are. Two of my most common statements are "Where is that"? And, "I have one of those somewhere." Again, patience is a critical element every day.
I have found it helpful to look at three things that need balance. First, we need to look at activities that we will be doing in the house that don't require transportation versus jobs we need to do when going out (appointments, shopping, etc.). Second, we have to look at things we can do ourselves (for example, me working on the computer) versus things we need help doing. Last, we can differentiate and balance time management versus managing activities. We need to think about the activities we need and want to do and how long these will take. Then, we need to plan and schedule these activities with this timeframe in mind.
In summary, doing basic tasks takes longer, is more challenging, and takes more energy when you have IBM. Excellent planning and efficiency in multitasking help, along with reasonable timeframes and expectations.
IBM has a very disruptive impact on lifestyle.
► Many day-to-day routines are affected.
► Bathroom and bedroom are vital areas: activities we now take for granted may drastically change.
► Complications must be watched for/managed.
► Weak swallowing may develop, leading to choking.
► Weakness in breathing (diaphragm) may develop.
► Outside caregiver help will often be needed.
► It is a significant challenge to see that you need and get the right equipment at the right time.
► Examples: walkers, wheelchairs, home renovations, ceiling lifts, shower chairs, handicap vans, etc.
⧈ 6.3.3 Lifestyle choices.
In a person's life, they make many choices about what to do every day. Often, these choices don't significantly impact a person's overall life. On the other hand, some of our picks are more important in determining the future of our lives.
I'm going to look at our health as a teeter-totter—on one end, we have health, and on the other, we have an illness.
The health and illness teeter-totter.
The healthy end is up in the air for most people, and the illness end is down. We have to do our best to emphasize positive practices that contribute to health and minimize harmful factors to our health (this is especially true as we get older).
What are the factors that tilt the teeter-totter up and down? First, we have genetics—we are born with certain genetic predispositions to make us more likely to develop certain illnesses or protect us from getting certain diseases. Then we have the environment we are exposed to. For example, many people who live in big cities are exposed to high levels of pollution that impact their health—the immune system and breathing for example. Finally, we have our choices: our diet, how we handle stress, our social network (that exposes us to both support and conflict), and our use of alcohol and drugs, including nicotine.
Our ability to make positive and healthy life choices becomes more critical when dealing with a chronic illness.
The chronic illness teeter-totter.
When a chronic illness impacts you, it becomes essential not to make problems worse by making bad choices because the balance is already tipped. If you have issues with weight, smoking, or drugs, it is important to discuss this with your doctor and get their advice and help.
My family doctor retired, and I found a great new one. He asked if I had any other problems, and I said, "Apple pie," and we laughed. But it is no joke; it is difficult to control your diet while struggling with something like IBM.
Important lifestyle choices boil down to your goals. What is your overall goal? Is it to focus only on today? Or, is it to maximize your health by making some difficult choices today to focus on the long-term? Only you can answer these questions in making your choices. We each face unique decisions, depending on our situation and goals. Try to make choices with your health in mind.
► A muscular illness challenges us to organize and manage our lives more effectively.
► There are many different aspects to living life, and most are affected by IBM.
► Coping involves learning how to manage many aspects of life with a chronic illness.
► What do you need to do to make these steps successful?
Major lifestyle choices.
► Life, health, and stress management often involve many lifestyle choices and changes.
► Often major and very hard decisions.
⇒⇒ Stop smoking, lose weight, reduce alcohol, etc.
► People with chronic disorders need to put these changes into the context of their illness.
► Balance and weigh changes against our goals.
► The choices we each face will differ depending on our situation: we must try to make positive changes to improve life.
► Many factors contribute to our overall health.
► Genetic factors: interact with our environment.
► Environment: what we do, all that is around us.
► Social: psychological and emotional well-being, stress, support network (family, friends, medical team, psychologists).
► Diet: amount & type of food, hydration, exercise.
► Nicotine, alcohol usage, and all kinds of drug usage.
► We must be very aware of our overall health status—and "health quotient."
► We must develop positive practices and minimize factors harmful to our overall health.
⧈ 6.3.4 Fatigue.
One of IBM's most common and intense impacts is ongoing mental and physical exhaustion, sometimes leading to fatigue. Fatigue is a feeling of exhaustion that does not recover from periods of rest — it is a feeling of being burned out that requires awareness and attention. Once you reach the level of fatigue it is often difficult to recover without help. Fatigue is a complex problem because it has both physical and psychological aspects. Being weak takes more energy to do daily tasks, and the physical elements of IBM are very tiring. But as well, the mental stress associated with the changes IBM brings also contributes to feeling tired. Chronic fatigue impacts how we feel, think, and behave and often is a component of depression. The physical and psychological aspects also interact—overdoing it physically may lead to both mental and physical exhaustion.
In 2000, I was still using a cane, and I went to a conference. It was on a high hill, and the hotel was at the top. On the first day, I walked up the hill. I underestimated how far and how steep it was, and by the time I got to the top, I was completely exhausted. I could barely move the next day, and I had to take the hotel's golf cart. That was a good lesson in learning to pace myself.
► IBM patients often feel "very tired all the time."
► May lead to exhaustion/burnout—more serious.
► Fatigue: often reduced motivation and energy—also serious.
► Tiredness can sometimes cause depression or may be a symptom of depression.
► Overactivity can lead to several days of exhaustion and slow energy recovery.
► Tiredness needs to be considered ahead of time when planning activities.
► Do not plan too many activities in one day.
► If you overdo it, stop and let yourself recover.
▣ 6.4 The psychological impacts of IBM.
There are two significant aspects. The first is who we are, our personality, and how we will respond to having IBM. This involves traits. Traits are the expression of our personality. Any parent will tell you that you can very quickly see personality traits developing in an infant—their individual personality comes out very quickly, and this development continues into adulthood. In the case of personality traits, many genes contribute small impacts that together influence the development of certain traits. For example, the genetics we are born with contributes about 25% to the trait of anxiety. But that's not the whole story. Environment plays a huge factor in determining how anxious an individual will be. For example, children who are abused will develop higher anxiety levels as adults compared to children who have happy childhoods. Many of the aspects I'm going to discuss here are impacted by combinations of genetic and environmental factors, including how we respond to stress, depression, our ability to accept new situations, etc.
When we think of someone's personality, what are we talking about? Personality refers to the patterns of thinking, feeling, and behaving that characterize an individual. Each individual has a unique personality—no two people have identical personalities. When we compare two people, we will see differences between them based on their personality characteristics. Psychologists often use the idea of traits to describe these personality characteristics. Traits are often described as consistent and ongoing aspects of personality. They are relatively stable over time and situations, and they influence how we see life, our behavior, and our reactions. Here are some examples.
► Extraversion (outgoing)—versus—introversion (shy).
► Agreeable—versus—hard to get along with.
► Dependable and reliable—versus—undependable and unreliable.
► Emotionally stable—versus—emotionally unstable.
► Open to new experiences—versus—close-minded.
The second significant aspect is how IBM will impact us as a disease, which will naturally vary widely depending on what IBM throws at us. This will involve factors like how IBM will affect our abilities and, in turn, the degree and type of life challenges we will face, the degree to which we will need to alter our life choices, and the level of fatigue we will have to deal with.
There is an interesting comparison between personality traits and IBM. Both are determined by multiple factors, including genetics and environment. As well, with IBM, the environment likely interacts with genetic predispositions to either increase or decrease the chances of IBM developing during one's lifetime.
⧈ 6.4.1 Anxiety.
Just what is anxiety? Anxiety is an emotion that is unpleasant and uncomfortable. It often makes us feel like something bad is about to happen. Anxiety has physical aspects similar to stress. We feel restless and tense and on edge. Anxiety is often a normal reaction to a situation that causes stress. For example, I have anxiety before I go for a job interview. Anxiety tends to be stronger than everyday worry and lasts longer. There are different types of anxiety, and there are different ways anxiety can cause trouble for us, as we will explore here.
It is normal for people to have “future anxiety.” We wonder and worry about what may happen tomorrow. Many people have anxiety over the future, especially if some event is coming up. The day before a game, the hockey player will have anxiety about how they’re going to play. Having a dynamic disease like IBM intensifies this anxiety over the future. Where will my weakness strike next? Will I fall tomorrow? What will happen if…?
It’s not unusual for people to struggle with day-to-day “general” anxiety; nowadays, it seems like a regular part of our hectic lives. Specific problems intensify daily anxiety levels, and having IBM is certainly a good reason to have anxiety.
It is essential to understand that fear and anxiety help us avoid danger. Imagine walking in a forest and seeing a snake. You immediately become fearful, feel anxious and jump back. For a few moments, you are full of adrenaline and energy. This is an adaptive response designed to save your life (and this response is not a problem if it saves your life).
On the other hand, anxiety can become a crippling problem if you imagine a snake that isn’t there. You have all this stress and anxiety produced just from thinking about the snake. Here, IBM may become the imaginary snake we can’t stop thinking about. Having anxiety over long periods is not healthy, either psychologically or physically.
During the early phase of my disease, my mother was in the hospital, dying of cancer. Every night I came back from the hospital, my muscles had knots like golf balls from the stress. At that time, I was not diagnosed, and the anxiety I had over my undiagnosed illness and my mother was too much for me. It came out in muscle tension.
It's a struggle to deal with the stresses of life, and it's a constant problem that we need to work on.
► Often, people imagine what might happen tomorrow and develop intense anxiety over it.
► People with IBM may fixate on "future anxiety."
► Many try to deal with this anxiety using denial.
► Controlling "future anxiety" is the most challenging point discussed here, and it is critically important:
⇒⇒ Knowledge can help ground a runaway imagination.
⇒⇒ We need to focus on today and live for today.
⇒⇒ We need to learn to relax, let the future unfold, and "take life one day at a time."
⧈ 6.4.2 Stress management.
Like anxiety, stress is a normal reaction designed to help us respond to new situations and avoid danger. Stress is triggered in the brain when we perceive or think about something that implies danger. The brain tells the body to get ready to fight, freeze or run away. These changes in the body involve a series of chemical releases that significantly impact the body's organs.
Again, like anxiety, stress can be triggered by perceiving something in the real world, like the snake on the pathway. Like anxiety, stress can also be triggered by imagining the snake. A good example might be; I leave the house, and I get to the store. I suddenly think, "Did I leave the stove on?" This idea triggers a mild stress reaction. The more I think about this, and the more I wonder—did I leave it on or not?—the more stress I experience.
I feel stressed, but I'm often not aware of the physical impacts—I'm not aware of the chemicals surging through my body. Sometimes the physical stress reaction becomes obvious. For example, as you drive over the hill at eighty miles an hour and see a police car—that sudden uncomfortable feeling in your stomach is the release of those stress chemicals!
There are two cases where stress really becomes a problem: frequent, exceptionally high stress for short periods—or elevated stress over long periods of time. Stress chemicals dramatically impact the systems and organs of the body, putting them under tremendous strain. Over time, this adds wear and tear to our bodies. The physical effects of stress can impact the heart, the immune system, the digestive system, the muscular system, and the skin. High or chronic stress is associated with many health risks, including; heart attack and stroke, high blood pressure, diabetes, acid reflux, and tension headaches.
Stress influences our emotions and feelings, often making us feel on edge, depressed, moody, and overwhelmed. Stress makes us worry, have problems concentrating, and can impact our judgment. Over time, stress can make us feel helpless and out of control.
You cannot be both stressed and relaxed at the same time. They are opposites, like the two ends of a teeter-totter. If stress goes up, relaxation goes down. If relaxation goes up, stress goes down. This way of understanding stress points to an important internal mechanism we can all use to deal with stress.
The stress relaxation teeter-totter.
When you feel stressed, you can learn to relax mentally. For example, many people develop a calm scene that they associate with feeling relaxed. Imagine the last time you were at your favorite beach, watching the sunset while listening to the water. You never felt so relaxed in your life. With practice, you can reinforce this feeling of relaxation every time you imagine the beach. When you feel stressed and visualize the beach, your relaxation response kicks in and brings down your stress. There are many different relaxation techniques and strategies that you can learn.
Ideally, you can also learn to prevent a lot of stress. Generally, the better your overall health, the better you can handle stress. This includes diet, drinking enough (non-alcoholic beverages), getting good exercise, and regularly relaxing. It also includes identifying those things that cause you to have stress, and learning how to deal with them effectively or learning how to avoid them.
Finally, many people deal with stress inappropriately. Many people drink alcohol to relieve feelings of stress, or they smoke. Unfortunately, drinking and smoking add to the physical problems caused by stress.
Stress (whatever causes it) creates a series of mental & physical impacts on people.
► Some level of stress is normal, but two types are harmful.
► Short periods of extreme stress (acute stress).
► Moderately raised stress for a long time (chronic).
► People with IBM must be aware of stress and learn to manage it.
► Working with a therapist may be very helpful.
► Mental aspects: part of the solution (how we see our stress, learn to cope/relax, our attitude).
► A healthy physical lifestyle: part of the solution (Smoking? Drinking? Diet? Proper exercise?).
⧈ 6.4.3 Emotions.
This section will discuss emotions and feelings and explore some of IBM patients' common feelings. First, I will talk about the difference between emotions and feelings. Emotions are physical states that we experience in the body. They are produced by the brain and involve a series of chemical impacts (just as stress does, but with different chemicals). Emotions are physical and involve physical changes in the body.
On the other hand, feelings are what we subjectively interpret emotions as. We experience an emotion, and then we assign a name and a meaning to it. Let me give a couple of examples. Your partner has been away for a few days on a business trip. When you meet them at the airport, your eyes light up, and you feel giddy. You realize how much you have missed them. We interpret these feelings as love. Or you have been waiting in line for half an hour. It is finally your turn, and someone steps in front of you and says, "I need to go ahead. I'm in a hurry." You feel your face turning red and feel your teeth clenching. That emotion is anger, and our feeling is irritation, aggravation, and frustration.
It is not uncommon for people to be poor at naming or describing their feelings and emotions. Generally speaking, it's helpful to be aware of our feelings and ask ourselves if the situation justifies our feelings. Often, if people think about it, they may realize that their feeling does not correspond to the situation, or that the strength of their feeling does not match the problem — perhaps the feeling is either too great or too little.
Being aware of our feelings also gives us another advantage. When we have an uncomfortable feeling and are aware of it, we can do something about it. We don't have to be passive victims of our feelings. For example, let's say my coworker made an offhanded comment at lunch about the accessibility of the building. Later as I sat there and thought about it, I got irritated because my coworker did not understand how important access is for some of our clients. I decided to talk to him during the coffee break, and I explained how I felt. He seemed to get what I was talking about, and I felt much better. I took action to resolve my irritation.
Emotions and feelings also significantly impact thinking, and thinking substantially affects how we feel. As well, we often mix up thoughts and feelings. Someone may say, "I feel like I'm not good enough." That is not a feeling; that is a thought. Thoughts are ideas and opinions. When thoughts last a long time, we talk about them as our attitudes towards things.
Thinking about something can result in a feeling—I'm thinking about the test tomorrow, which is making me feel anxious. Feelings influence thinking. If you have tremendous anxiety about the test, you won't think or remember well.
People tend to have more positive thoughts about the world when they feel happy. Feelings and thoughts also influence behavior and often motivate our behavior. We act because we think and we feel. It also goes the other way—when we act, it affects how we think and feel. For example, if I am at bat and swing and hit a home run, I will think I'm a good baseball player and feel happy. If I strike out, I may think the umpire was a poor judge of the pitcher's throws, and I'll be thinking I was robbed and feeling bad.
The relationships of feeling, thoughts, and behaviors.
It is a healthy and positive exercise for you to take a moment and write down how you feel about having IBM and what your thoughts are about having IBM. Think about it for a moment—how do your thoughts and feelings about IBM influence your behavior? How do they influence your attitudes? How do your attitudes affect how you see, think about, and feel about having IBM? Don't be afraid to discuss how you think and feel about IBM with your family and caregivers.
One of the questions that often comes up is: "Is this feeling normal?" There is no right or wrong way to feel. How you feel is how you feel and represents a normal response. Everyone will feel differently about things because we are different people with different experiences in life, and we all see life somewhat differently. So, it's only natural that our feelings will also differ.
Often people with IBM describe a roller coaster of feelings going from very positive to very negative. It's essential to be open to both positive and negative feelings because they equally describe your situation at the time. However, if you can, it is generally healthier to focus on the good feelings, appreciate the positive, and at the same time, try to get through and rise above the hard times.
► "Is it normal to feel this way?"
⇒⇒ No matter how you feel, it is a normal reaction for you. There are no "right" or "wrong" feelings.
► Roller coaster: We will all have a wide range of positive and negative feelings.
► It is essential to be open to both our happy and sad feelings and not deny them.
► To experience all of our feelings is a natural and essential part of our lives and learning.
► Important to get through and rise above bad times.
► Have gratitude and appreciate the good times.
► Focus on the positive more than the negative.
⧈ 6.4.4 Depression.
At first, it is common to feel sad over the effects of IBM. It is also a natural feeling to be sad when we can no longer participate in the everyday activities of life. What is the relationship between sadness and depression?
Sadness is a normal feeling in response to something that makes us unhappy. It is a typical response to experiencing a minor loss. Sadness is considered a mood and is a brief feeling that many last minutes, hours, or perhaps a day.
Likewise, it is normal to feel bouts of depression where we feel a more significant loss. A sense of defeat, feeling down, empty, or hopeless. Mild episodes of depression (and anxiety) are common in facing the diagnosis and experience of IBM. These are expected and normal feelings in the face of a major life challenge. Try to allow yourself to experience and work through these feelings.
Take bad days one at a time. Try not to dwell on the negative. When you feel depressed, try to think of positive actions to make yourself feel better. Appreciate positive things. Spend time doing things that make you happy even if you feel down. You may not want to get out of bed, but it's essential that you do. Try to maintain your regular daily routine until you feel better.
In summary, short periods of sadness and even more extended periods of mild depression are normal and expected when facing a significant challenge like IBM. Try to look to the positive and work through the negative.
Major depression is a different story; it is a medical problem that needs treatment. What is major depression? Four criteria point to major depression: length, intensity, impact, and thoughts of suicide.
► It is a concern if you have depression that lasts more than two weeks.
► The intensity of your feelings includes profound feelings of depression with little hope of returning to normal.
► Major depression disrupts the normal, routine activities of life. People commonly lose their appetite, feel exhausted, lose motivation, cannot concentrate or focus on tasks, see no solutions, and stop communicating with the people in their lives.
► Finally, thoughts of suicide are usually characteristic of feelings of deep depression. They do not simply occur "out of the blue."
Any of these indicators of major depression should lead you to your doctor. Major depression does not merely "go away." A combination of medication and counseling helps in most cases.
Unfortunately, there is often a feeling of anxiety associated with dealing with depression, and many people do not seek help because they feel ashamed. If you feel depressed, please approach your family and your doctor. Although it may feel hopeless, you have to remember that at this time, you are not seeing life clearly, and you need help to get back on track.
A factor complicating emotionally dealing with IBM is the presence and severity of complications. For example, difficulty swallowing has social impacts when the patient becomes embarrassed or afraid to eat in public or with friends. This can lead to isolation and feelings of depression. Likewise, changes in speech may cause a patient to curtail social activities. Again, I emphasize the importance of identifying complications early and working with your doctor and others to deal with these issues both physically and psychologically.
Sadness versus mild depression.
► Sadness is a normal emotion responding to something that makes you feel unhappy.
► Sadness is a fleeting feeling; it lasts a few hours or a day. It's normal: we all feel sad at times.
► Mild depression is a more prolonged, profound feeling of being empty, down, hopeless, etc.
Mild depression: A major factor.
► Mild, brief bouts of anxiety and depression are common and expected when faced with IBM.
► Mild depression lasts at least a few weeks; involves broad, adverse changes in outlook.
► Let yourself "live/work through" these feelings: it's O.K. to feel down sometimes, however:
⇒⇒ Take things one small step at a time.
⇒⇒ Try not to focus on the wrong or negative aspects.
⇒⇒ Appreciate and focus on gratitude for the positive.
► Try to turn "negative feelings" into positives: if you feel sad, what is a positive action you can take to deal with it? A positive attitude is your best asset.
► Spend more time doing things that make you happy.
► Mild depression may develop into a major depression.
Major depression: A medical problem.
► The red flags of major depression:
⇒⇒ Length: lasting for more than two weeks.
⇒⇒ Intensity: deep negative feelings, loss of hope.
⇒⇒ Impact: normal, routine life activities are disrupted:
⇒⇒ ⇒⇒ Loss of appetite, feeling exhausted, loss of motivation, lack of focus, hopelessness, and no future/no solutions.
⇒⇒ Thoughts of self-harm or suicide.
► Mention depression to your medical team.
► Counselling is a good idea for those with IBM and is often effective in dealing with depression.
► Many are helped by taking medication.
► Do not suffer in silence: talk to someone.
⧈ 6.4.5 Psychological stages.
The idea of psychological stages is widespread, and many people have heard about stages of psychological development and grief. Because people are so different, in my opinion, there is no one set of stages people go through when confronting a diagnosis of IBM. I believe there are two reasons for this. First, we are all so different in how we deal with IBM. Second, we are not all physically impacted by IBM the same way.
One problem is that if you read about stages, you may feel something is wrong with you if you don't follow the "proper sequence."
Someone asked me if I was angry about having IBM. I replied, "No, why would I be angry"? The lady said, "Oh, you haven't reached the angry stage yet." I will never reach the "angry stage" because I don't see the rationale or the point of getting angry at something I cannot control.
⧈ 6.4.6 Denial.
Sigmund Freud, a famous psychologist, believed that people develop psychological "defense mechanisms." These are unconscious methods we use to avoid the stress and anxiety of life. In many cases, defense mechanisms successfully allow us to avoid problems and anxiety. However, defense mechanisms intended to help us can also end up causing us problems in the long term.
When we are first challenged with the diagnosis of IBM, shock and disbelief are probably two of the first reactions we have. It takes some time to come to grips with and mentally process the idea. Most people do eventually succeed in accepting and acknowledging their situation. On the other hand, the other day, a person said: "I have had IBM for some twenty years and have no interest in knowing about IBM or how far it has progressed." This person's statement appears to reflect the defense mechanism of denial. In a nutshell, denial is refusing to admit the truth about something.
Many people try to deny the situation altogether. If you don't think about it and don't acknowledge it, then it is "out of sight, out of mind." Unfortunately, IBM is not the sort of thing that you can ignore—it will not merely go away.
Denial is a dangerous problem in IBM because turning a blind eye to your health often means delays in identifying and managing complications. As we have seen above, there can be serious complications involved in IBM, and if left untreated, they can lead to serious consequences.
If you see someone in denial, it may be beneficial to talk to them and see how they feel: what is their perspective on the situation? Do they see any consequences in not dealing with the situation? Why are they afraid to face the problem? Do their thoughts about the problem make sense? Or are they looking at the situation "through the wrong end of the telescope?"
Can you help the person find some middle ground where they feel comfortable and begin acknowledging the situation? Often support from a good friend or loved one can help.
Dealing with denial takes time, many small steps, and minor victories before the curtain can be pulled open. If you are trying to help someone, do not be judgemental, and give lots of time and support to help the person see that they can and should deal with the situation.
⧈ 6.4.7 Blame.
When something goes wrong, it is often human nature to look for someone or something to blame. People often feel uncomfortable when they don't know why something happens. Assigning blame "points the finger" for your problems to a specific cause. "It was the medications I took that caused my IBM." "The new carpet we had put in the house gave off a chemical." "It was the stress of my new job." When we feel like we know what caused our problems, it makes us feel better. To think that IBM just struck us out of the blue, for no understandable reason, with no way to prevent it, is a frightening idea because it makes us feel helpless and vulnerable.
As well, it's common for people to blame themselves. This usually leads to a spiral of feeling guilt. "If I got this illness, I must have done something to deserve it." If you could look at this objectively, you would see that this thinking is faulty; is it your fault that lightning hit your house?
► Blame is a common reaction when you feel bad, or something bad happens to you.
► Blaming IBM on "X" may make you feel better.
⇒⇒ Medications you used, things in your life ("new carpet in the house"), blame high life stress, etc.
► People often blame themselves, causing guilt.
► It is hard to accept, but IBM's triggers are likely beyond anyone's control or prevention.
► Blaming something or someone for one's illness is ultimately a waste of valuable energy, often leading to frustration and bitterness.
⧈ 6.4.8 Acceptance.
Although the exact causes of IBM are not understood, in all likelihood, your illness did not arise from a choice you made. Although challenging, this is something you must face: you must accept that you have this illness, whatever caused it, and move forward with your life.
Accepting IBM is very difficult for another reason. Because you also have to face the slow decline in your abilities that comes with IBM, acceptance and adaptation must occur hand-in-hand as you slowly learn to live "life with IBM." As new challenges come along, we constantly make small adjustments and adapt to new situations—new realities. For example, the new reality may be that we can no longer drive. Or that we need help in the bathroom. These are significant challenges because they impact the fundamental ways in which we see ourselves. Our focus needs to be on ongoing adaptations and acceptance in small steps. IBM challenges us to be stronger, smarter, and more organized, but it also challenges us to be more forgiving of ourselves, to accept what we cannot change, and to make the best of life as we encounter it.
Many people are looking for an identity. For example, many people define themselves by their jobs. I am a lawyer; I am a doctor; I am a bus driver. Many define themselves based on their role in life. I am a father; I am a mother; I am a son. I have met some people obsessed with defining themselves based on their illnesses. Do not lose yourself in your diagnosis of IBM. You are still you; you with IBM, but still you. Accept IBM in your life, but do not become it.
► No one wants to be ill; it is not something we would choose.
► However, we were not given a choice—this is how it is: "It is what it is."
► I am still me; I have IBM—don't let IBM define you.
► How we "see" this and deal with it makes a big difference to the kind of life we will live.
► Accept that life will change and be different and adapt to get the most out of life as it unfolds.
► Acceptance and adaptation are complex and take time—may occur in small steps for the rest of your life.
► Coping with IBM challenges us to face and rise above many everyday problems.
⧈ 6.4.9 Perspective.
Perspective means how we see life. Each of us has a slightly different perspective because we see life from slightly different points of view. Ideally, our perspective will be accurate enough to reflect reality the way it really is in life. So, if two people stand beside each other and look at something, they should describe basically the same thing. IBM is a disease that sometimes robs people of accurate perspective. We don't look at it as it is. For example, look at the picture below.
The loss of perspective.
If our perception is clear, we will immediately see a fork and probably think nothing of it. Likewise, if we see IBM accurately, then we can deal with it realistically. On the other hand, when people are under stress, they may not see things accurately; in this case, they may focus on the shadow and not the fork. If we don't see IBM with a clear perspective and we see it based on our fears or based on the unknown, then we may end up confused and even frightened—IBM may become like the shadow. We may lose sight of what we know about IBM and how to adapt, and our fears may take over.
Sometimes our feelings influence our perspective; this is common when dealing with IBM. Depression and exhaustion may color our view and may lead us to have a distorted perception of IBM.
We need to keep IBM in perspective. We know IBM does impact longevity, reducing it by about three years overall. If you are diagnosed at age 55, you will likely live another 30 years. Let's contrast IBM with ALS. On average, people with ALS will die within five years of diagnosis.
In summary, we need to keep IBM in perspective. It is not helpful to see IBM in an overly negative light. Talk to other IBM patients, talk to your doctor, and talk to your family to check your perspective. If you see IBM as a mountain too high to climb, it has already defeated you. On the other hand, if you see the individual steps on the path, you can take them one at a time and not be overwhelmed.
⧈ 6.4.10 Suicide.
I have spoken with patients who have expressed that "suicide is the only alternative after an IBM diagnosis." If we see IBM accurately and judge it fairly, it is not a monster that we need to feel hopeless in the face of.
I have done my best to draw an accurate picture of IBM. Not optimistic, not pessimistic, but hopefully a realistic picture.
The good: most people should live out an essentially average life span after the diagnosis of IBM. IBM does not impair thinking or memory. IBM progresses slowly, giving you time to adapt psychologically and time to adapt your physical environment. In the early stages, a well-designed individualized exercise program should help. We understand the common complications in IBM, and generally, they can be managed.
The bad: IBM eventually severely affects movement in the hands, arms, and legs, often making daily activities difficult or impossible. There is currently no effective medical treatment for IBM. Complications can become life-threatening, especially if ignored or not managed properly.
Some people may only see the shadow and not the fork. Life after diagnosis may seem hopeless, and their perspective on what is possible and what awaits them may become distorted to the point of despair. Suicide may seem like a solution when this happens. This is especially true if you have endured long periods of exhaustion and depression or struggled with significant problems swallowing. If you think that suicide may be a solution, it is helpful to double-check your perspective with someone else.
As we described above, thoughts of suicide are often a result of major depression. Unfortunately, we are often afraid to talk to people about suicidal thoughts. We are worried that we will be seen as weak or that the other person may brush us off and think nothing is wrong. Or, based upon our distorted perception, we may think that we are "beyond hope" and it will not matter if we reach out or not. It takes courage to reach out, but today, there are many treatment options for depression, and you should give yourself the chance to explore these options. Talk to your doctor.
While suicide may seem like a solution to you, keep in mind that it has a tremendous impact on families and those left behind. Furthermore, and quite sadly, some people attempt suicide and end up in a worse situation than they started out with.
In summary, we need to keep IBM in perspective. It is not helpful to see IBM in an overly positive or negative light. Talk to people and check your perspective. It's okay to talk with friends and family, but I suggest that you don't rely on them exclusively; not only are they unlikely to be professionally trained, but they may also be feeling overwhelmed themselves and not know how best to support you.
If you feel depressed and have suicidal thoughts, medications and counseling may help, and I urge you to reach out and talk to someone. Talk to your doctor or counselor. Talk about depression. However challenging life is right this minute, you are still here and still alive. Try to appreciate that.
► IBM often has drastic impacts on one's life.
► For some, suicide may seem like a solution.
► Suicide has a significant impact on families.
► A suicide attempt may fail: end up worse off?
► Are your feelings from depression?
► If your feelings are from depression, treatments may help you.
► If you have reached the point where you cannot go on, then reaching out to others for help would seem like the best step.
⧈ 6.4.11 End-of-life.
Our views about death have changed dramatically over the last 50 years. No one mentioned people dying when I was a child in the late 50s and early 60s. Death was cloaked in mystery, even in medicine, and how medicine dealt with the end of life has also changed dramatically. Today we are much more open about talking about death.
In 2016, I ended up in intensive care with a pulmonary embolism. One of the first things they did was ask me to tell them what resuscitation level I wanted — essentially, high, medium, or none. I was slightly surprised by this question, and I joked to the nurse, "I'm not that sick, am I?" She said, "It's better for everyone if we know your wishes, and we ask everyone."
Today, medicine has a new and more open approach to understanding end-of-life. It is now common for people to discuss end-of-life planning with their families and doctors. This is especially important in older individuals with multiple medical conditions (it is common to have more than one health problem as we get older). Having various issues complicates the management of each one. If you have IBM in conjunction with other health issues, or if you have IBM and have severe complications, it might be helpful for you to discuss end-of-life options with your family and doctor. Today, the emphasis is on having a pain, and stress-free passing. Pre-planning gives you and your doctor control over the situation.
► With proper medical management, most IBM patients will die with IBM, not from IBM.
► IBM is not considered a fatal disease.
► Complications are usually not fatal if well managed.
► IBM is a disease of aging; as we age, various other health issues may lead to death.
► The average person dies of 32% cardiovascular, 25% cancer, 9% dementia, 7% respiratory, etc.
► IBM complicates one's other medical issues.
► Our medical team must manage our illnesses.
► It is wrong to see IBM as a death sentence.
End-of-life options and choices.
► Depending upon where you live, there may be options your medical team may be able to offer you to make your eventual passing easier.
► In some cases of IBM, especially those involving severe complications, it may be helpful to explore end-of-life options. There are better choices available than suicide.
► As you age and problems arise, discussing the various end-of-life options with your family and your medical team is essential.
► Like the security of having a will, this planning may help reduce the stress and anxiety of your passing.
⧈ 6.4.12 Compassion.
An essential part of coping with IBM is having compassion for yourself, your family, and others. Have compassion and understanding for yourself. Understand when you can't do what you want to do. You're not lazy, and if you could, you would. Try to have compassion for others who have different struggles, stressors, and anxieties, because ultimately, they fight the same fight you do.
Encourage others to be compassionate and show understanding. Often, people are harsh and cruel because they do not understand. Our job is to understand this illness we call IBM and to help educate others. Education overcomes ignorance. Be a firm but compassionate advocate for yourself and others.
► Have understanding for yourself.
► Have compassion for others in your life and their stress, anxiety, and problems.
► Encourage others to be compassionate.
► Many people simply are uninformed about illnesses.
► Education overcomes ignorance.
► Become a "calm but strong" advocate for yourself and others, not just for the ill but for everyone you meet.
▣ 6.5 Counseling.
You are not alone and cannot be expected to deal with IBM singlehandedly. But this is not just about doctors and tests. It's also the realization that you might benefit from talking with a mental health professional. You deserve help, and help is available if you ask. There is no shame in seeking advice and support, and today many avenues to access resources easily are available. Many counselors and coaches offer video services that are easy to take advantage of.
As I've already said, as IBM challenges your mobility, it can also threaten your sense of who you are because as your mobility becomes limited and your "old" routines change, your sense of yourself also changes. Having someone professional to talk with can be a lifesaver if you open yourself to the possibility. This applies to you and those close to you, as they also have to learn to adapt and face the same life-altering challenges that you do. Do not let pride get in the way of helping yourself.
When a flower or plant is struggling it often does better when we change it's environment. Sometimes we need to change our environment or create a new one before we can learn move forward in our Myositis Journey. Joe Sanchez