Article reproduced from The Pediatric Network

So what can we as a parent do to survive these days, and to continue to be able to be there to support our ill children? The first thing I would recommend is to try to find some time, if you haven’t already, to join in on the conversation in The Parents’ Corner. If you need a password to enter this password-protected section of the forum please don’t hesitate to ask us!! This has been such a saving grace for many of our parents these past few months as we have struggled with the issues of raising children with these disorders. We have a few parents suffering from various forms of the illness themselves, and we have some facing the struggles of parenting children under the age of 10 — an extra daily challenge. But mostly we are tired, emotionally drained parents who want to be there for our kids, who want to help them through their pain, who want to comfort them in any way we can. If you have not had the time to join us, please think about stopping by, if only to read some of the posts that others have left.

Aside from reading the forum, I think it is very important to make sure that you do not become so consumed in your caregiving that you loose yourself in the process. This is so much easier to say than to do. I am often a victim of giving too much, and forgetting to nurture myself, as I am sure many of our other members are too! What can you do to nurture yourself when so little of the day belongs to you?

1. Order take-out one day a week and serve it up on paper plates so there will not be any dishes.
2. Rent a movie that YOU want to see, and watch it with someone you love. (This can be your spouse, significant other, child, or a dear friend.)
3. Sit quietly and relax enjoying a glass of wine or lemonade or maybe even cocoa. These days my spot is by the fire, but soon it will be my back deck. Just 10 minutes of ME time really helps to restore some balance to my thinking and emotions.
4. Get a good book you have longed to read and READ IT! You can read next to your child at night or while they are doing something else, or alone. Getting Lost in a Good Book is always a nice diversion for me.
5. Give yourself permission to put all household chores on hold and go sit with your child and watch a movie, TV show, or play a game without feeling guilty for all that you are not doing. Sometimes I really need to give myself some time off to go totally enjoy some time with my daughter. We snuggle under the down blanket while I rub her head and shoulders, often serving up some favorite snack for us as well.
6. Spend some quality time with each of your healthy kids or your spouse. It can be a trip to the store or a movie, or a few hours at the mall. It can even be an early morning breakfast you can enjoy at a local restaurant before your ill child is up for the day. Making memories with my healthy kids is something I cherish, and I had to force myself to make time for this as well.
7. Think about a family getaway if your child can handle one. We are doing an overnight with friends at a local hotel this weekend. It will be low key and low activity, but will hopefully rejuvenate us all.
8. Take a warm bath whenever you can squeeze one in. Mine is right after dinner when my husband is available for the caregiver role. I have been known to squeeze it in before dinner if that is what works.
9. Call an old friend you haven’t seen in a long time. Even if you can’t get together, do a catch up on the phone.
10. Have HOPE that this day shall pass, and that soon it will be spring and summer and hopefully our kids will all be doing a little better, and then so will we.

You are never alone. If it becomes to much for you, you can join us in the forum or drop me an email at mary@pediatricnetwork.org. I think of all of you everyday, and all the parents who have not yet found us. If sharing my journey with you helps yours to be a little easier, then I hope you will not hesitate to contact me.

Here’s to better days for all of our children SOON!

Article reproduced from Paintracking.com

One of the greatest challenges of chronic pain is finding ways to live with others. Sometimes it seems more comforting to stay home alone, where we can relax, tend to our aches, set our own pace, and control our total environment. This would free us from having to explain, apologize, look odd, or feel guilty about the things we have difficulty contending with. We would no longer impose our tortured bodies on anybody else.

This fantasy, however, has some major flaws! What does it mean to have a life? Usually, living involves a variety of work, social experiences, and travel that remove us from the cozy nest we try to construct and put us in contact with the outside world. What would it really mean to give this up? Without chronic illness, few of us would consider a hermit’s life even marginally appealing. Now, we are pressed to find ways to maintain relationships — precious relationships — without excessive discomfort.

From a handshake with a new colleague to a long trip to visit family, we constantly struggle to reduce physical stress without burdening others or calling undue attention to our illness. These issues are relevant for short interactions with acquaintances as well as daily dealings with those most intimate to us. Finding ways to express our special needs requires careful situation-specific negotiations.

Most people want to be taken care of when they feel awful. People with chronic problems, however, constantly appear needy. This can be taxing to all parties involved. This article grapples with how to tread the line between acting the part of a martyr and the part of a witch — therein lies the challenge.

Just Say No

The first rule of thumb: Eliminate all activities you do not value and that do not require your participation. Even though we may be “sick all the time,” there is nothing wrong with declining invitations for health reasons. A polite, “thanks for the invitation, but I am not feeling up to it” should suffice. People cancel for many reasons. Excessive pain and fatigue are reason enough! We experience substantial pain; why add to it by enduring irritating people or activities? Reduce contact with individuals who drain you rather than add pleasure to your life. Think of yourself as an Brahmin: Reserve your precious energy for only the most important tasks. Prioritize. When possible, eliminate the “I should…” activities for the “I want to…” variety. It is often well worth paying someone to carry out strenuous chores, such as housecleaning and grocery shopping, to free ourselves for more fulfilling activities.

Limit Your Involvement

When you can’t “just say no,” limit the time you spend on burdensome tasks. If you must attend a social or work-related engagement, plan to arrive late and leave early. It is likely you will have a better time, and in most cases, people will not notice.

Come Prepared

For activities we choose to engage in, there are ways to make them less stressful and more enjoyable. Always be a good scout. Fill your car or bag with creature comforts. Extra medication, heat packs, pillows, silk long johns, earplugs and sunglasses can be real life savers. Once you determine for yourself what works, keep a checklist handy when you are preparing to go out. Think about the conditions of the place you are going: What is the temperature? Are the chairs comfortable? How is the lighting? Call ahead to inquire about the environment and whether any special arrangements can be made.

Communicate Clearly

Why is this one so hard? We need to express our needs to others in ways that are simple, direct and polite. Often people who care about us want to help but do not know what to do. However, asking for help is not a neutral act. By asking, we acknowledge weakness and dependence. Therefore physical discomfort is not the only factor in a decision to seek help or special treatment. As I see it, we suffer not only from physical discomfort. We also mourn for the things we can no longer do, and we fear standing out, calling attention to ourselves because we cannot keep up with others.

For these reasons, we need to weigh the importance of seeking assistance. In some circumstances, “passing for normal” might be worth a certain amount of suffering. This depends on such things as our plans for the rest of the day, our closeness to the people we are with, their disposition and familiarity with our condition, and our estimate of the repercussions.

We may prefer the five minutes of pain brought on from shaking hands with one person, for example, to having to explain personal limitations to a stranger. These are the kind of choices only we are in the position to make. While a simple, “I’m sorry, I cannot shake hands today…it’s very nice to meet you,” might work quite well, we may not feel up to it. Long explanations are never needed. A quick explanation such as, “I hurt my hand,” accompanied with a warm smile is unlikely to set interactions off kilter.

Asking for special assistance when something requires only minor alterations from others but greatly affects our well-being is the least difficult. Little requests such as opening jars or carrying small packages across the street can even help others feel good about themselves and their contribution to our comfort.

Difficulties may arise, however, when we desire substantial changes by others, when our wishes are at odds with those of others, or when we appear too aggressive. Asking for a sturdier chair is not difficult, but asking everyone to move tables may be more than is reasonable to ask. We cannot expect a party of twenty to change plans on account of our situation. Likely, there are others in the group with particular needs or preferences. In these situations, it is most important to come as prepared as possible with layers of clothes, earplugs, or whatever increases our comfort. We can excuse ourselves as often as needed to meditate, stretch, run hot water over our hands — whatever helps.

Our requests should take into account our relationship with the people, how familiar they are with our condition, and the length of time the interaction will take. On one extreme, we may decide to play the martyr — to keep quiet and endure great pains so as not to create a scene or disrupt others. However, most people would prefer to make some sacrifices if it means saving you from several days of down time. Put yourself in their place: how would you feel if you could have prevented your friend from having to spend two days in bed recovering? You would feel terrible, especially if something as simple as meeting inside rather than outside could have prevented it.

Although our pain may be quite intense, it is virtually invisible to those around us. No red flag begins to waive when our condition suddenly deteriorates. This makes communication paramount. Because of the intensity of our pain, we may (rightly) feel entitled to preferential treatment. But remember, others do not see our suffering: Few of us consistently use wheelchairs or other assistive devices that elicit sympathetic reactions. The most direct route is a simple explanation that we have a chronic pain condition which is greatly affected by certain factors, followed by a polite request. If your request is granted, make sure to express your appreciation.

The way we ask makes a difference. In the United States, helping others is considered an act of charity, not something expected of us. If we demand special accommodations in a bossy manner (the witch), people will be less enthusiastic about helping. But if we focus instead on how much we appreciate their assistance, others will likely oblige.

Preferences Versus Needs

Many people have strong preferences. With us, however, our “preferences” are often “needs” that, if not met, they cost us dearly. The onset of out-of-control pain or fatigue is frightening and potentially embarrassing, enough to make us wish we stayed home.

Because many aspects of daily interactions create additional difficulties for us, it is completely reasonable to try to influence the environment to suit us better. When it comes to pain, we are no longer contending only with “preferences.” We would probably have shared others’ preferences (for nice long walks, convertibles, etc.) had our physical condition not turned otherwise joyful events into hardships.

But while our condition may be severe, everyone has preferences and people vary in their flexibility. It is unrealistic to assume we alone experience ailments. When asking for help, show respect for others and inquire about how the change may affect them. Many people, for example, suffer from back trouble. On an airplane, you might inquire of a sturdy-looking young man: “Because I suffer from a muscle condition, I cannot lift my bag into the compartment, could you help me?” In most cases, strangers are happy to lend a hand (and our bags are surprisingly light).

The more complicated situation involves those with whom we are closest. For those most intimate, it’s extremely important to understand what makes us feel better or worse. They certainly don’t want us to suffer more! However, these are the people most affected by our suffering. When asking of them, do not dwell on your needs and always express gratitude when someone arranges something for you without your asking.

No doubt close friends will want to help you prevent additional pain. At the same time, even the most sympathetic people may begin to resent numerous constraints on their behavior. It is very important to determine their boundaries. Some people have endless tolerance and patience; while others are easily frustrated by the pertinacity of our condition.

Although we may have to contend with continual pain, it is not fair to use it as a trump card so that our preferences automatically come first. Although the kindness of friends may save us days of pain, we should not make others feel responsible or guilty about our suffering.

Relationships require balance: they are not a one-way street. Remember to keep abreast of the needs of those close to you and try your best to accommodate them. Framing your requests as special favors, rather than expectations, may allay any negative feelings.

Identifying Our Needs

On a practical level, know what you need — the type of chair, lighting, temperature, rest breaks, and noise level — to be most comfortable. This makes it easier both for yourself and for those who want to lend a hand. Although the variety of things that affect us may become intuitive to us, they likely seem an odd assortment of factors to others. Help them by being very clear about what is most difficult and helpful to you. Be simple: “I have a lot of trouble with ___________, it would be super if you could ___________. Will this be a problem?”

Overidentification (Too Much Empathy)

Sometimes our loved ones have the most difficulty confronting our disabilities. Our suffering is hardest on those who care most. For them, our difficulties become theirs, sometimes resulting in psychosomatic, empathic reactions. While we may want to share all of our experiences with them, think about the effect this may have. How would you feel if your partner or child were in terrible pain all the time? Just as we crave a break from our symptoms, our family and friends need relief from thinking about them. This does not mean we should be martyrs; your goal should be to create a balance between sharing our trouble and focusing on other things. Be sure to introduce topics unrelated to your medical state. Distraction can be extremely helpful. How much fun can it be to spend time with someone always focused exclusively on their illness? Stockpile interesting stories to share that will take everyone’s mind off your day-to-day problems and focus on more interesting subjects. On the other hand, it is important to keep your family and friends generally informed about your well-being so that they can know what to expect. It may be helpful to devise a system to signify pivotal points where assistance means a lot. Some people feel helpless if they are not actively assisting you: for them, find discrete tasks they are comfortable with. Others, however, feel overburdened by simple requests. People vary in their tolerance for suffering, both for their own and for that of other people.

Just because we may suffer does not mean our partners or family should also. We can reduce their discomfort by trying to prevent situations where our pain gets out of control. Taking good care of ourselves also helps them. Try to focus on the gratifying events of each day. Helping a partner stay in good spirits contributes to a more positive state of mind for us as well.

Denial

Some people close to us may be reluctant to offer help because they may not want to accept we have a “real problem.” Some may be skeptical because there are no “objective” indicators of our illness; the medical community is still somewhat disbelieving. For these people, education is the key. Literature now abounds about many aspects of fibromyalgia, from symptoms, to coping strategies, to assistance for families and loved ones. Because of the wide variety of our symptoms and needs, one approach is to admit that our condition is rather bizarre. In making a request, you may say, for example, “I know this seems odd, but the noise from your open car window actually creates tension in my muscles that causes terrible pain.”

Those afraid to admit that we may be ill need reassurance that, although we have a medical problem, we will still be available for them. Children may be afraid to confront their parents’ vulnerability. Feeding their denial, however, forces you to adopt a martyr role. Those who care about you can be reassured that you can control this benign illness with certain procedures with which they can help, if they so desire. This does not mean you will become dependent on them. To the contrary, the more others help with the little things, the more available you will be for them. Remember what the airlines always say before takeoff about putting on the air mask in the event of emergency? “First secure your own mask, then help those around you with theirs.”

In sum, interactions with the outside world can be challenging when you are dealing with chronic pain and fatigue. To preserve energy for the things most important to you, eliminate all superfluous tasks and unpleasant social activity. For those activities we choose to do, always come prepared. When we desire assistance from others, ask politely and clearly, explaining that they are saving us a great deal of pain and we are very grateful. People like to feel appreciated. When this approach is unsuccessful, there are several options. We may decide to rule out future interactions of this sort when possible. We can calculate whether the extra pain is worth it. We are the toughest group around. But playing the martyr entails huge costs and can be done only so much. When it comes to those closest to us, clear communication is crucial. You should make sure others understand your needs. But, at the same time, you should respect their preferences too. Living with someone who is chronically ill is taxing. Make sure to give credit to those who stick by us. We have many thorns in our feet. It’s the greatest act of love to pull one out. By finding ways to communicate with our family, friends and colleagues, we can pull the thorns out together, one by one.

Article reproduced from Paintracking.com

The other day, during a casual conversation, a friend told how she had explained my condition (fibromyalgia) to someone else:

You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that’s how Debbie feels. Only it does not go away.

I was floored. I felt tears flooding my eyes. But why? I wondered. Well, because I was understood. My friend showed me that she knew what I was experiencing, how I go about my day. If she were an anthropologist, she should feel successful because she managed a deep understanding of the “native’s experience.”

Later, I thought about my friend’s simple explanation of fibromyalgia. Why was it so meaningful to me that someone understood how I feel? At the same time, however, I felt a little strange about it. As if my friend had peered into the otherwise personal and private relationship between me and my pain. I pondered my mixed emotional reaction.

I began to ask people with similar “invisible” conditions about their desire to be understood. The answers were mainly practical: If we were understood, they explained, we would not have such a difficult time being excused from certain activities. Friends would understand why we were saying “no,” and not push us. They would accommodate us, or give us a break when we need it. The same goes for family, and even coworkers when possible. In addition, being understood is important because it can restore self esteem when we are not able to finish (or even start) the projects we take on. Being “ill” is preferable to being thought of as “lazy,” “hypochondriacal,” or a “whiner.” Finally, being understood, particularly by someone who shares our experience, creates a feeling of camaraderie. You do not have to explain in any detail to produce an accurate picture or evoke an appropriate response. To be understood is to be validated.

What It Means to Be “Understood”

Many of us often think with dismay that “nobody knows what we are going through.” This is probably correct. The casual observer is unlikely to perceive the depth of our pain or fatigue through our behavior or appearance. And our friends, try as they may, often feel confused by our seemingly strange array of complaints. Our presentation communicates the double message of “invisible illness” — that we can look perfectly fine, but feel absolutely crummy.

A few friends of mine with invisible illnesses, however, prefer the secrecy. They would rather appear like everyone else and lick their wounds later, in private. They have weighed the cost of added physical discomfort against the biases they imagine people may have against them, their abilities, their attractiveness, and even their value as a person, and decided to “bite the bullet.” For them, understanding appears threatening, unless reserved for their most intimate circle.

As such, understanding represents a two-edged sword. Let’s think about it. If someone really knew what you were experiencing, say, right now, how might that person feel or react? How do you feel when you know someone is suffering? Knowing the extent of our difficulties may frighten others, depending on their own life experiences and how close they are to us. Those closest to us, and particularly the more nurturing, may become overprotective. They may wait on us hand and foot, as though we are unable to do anything for ourselves.

At the same time, our social invitations may dwindle as “understanding” friends protect us from overtaxing activities. And although there are laws against discrimination, it is not difficult to imagine coworkers and bosses changing their opinion about the type or amount of work suitable for people like us (even if we had been successfully doing it!). Such “understanding” could affect our ability to find and keep manageable employment.

It therefore seems to me that understanding, like many things, is something that we want when it is convenient for us, but that we would like to withhold when it works against us. Rather than providing full information with a vivid stamp on our forehead (or something less abstract such as a wheelchair), we may prefer to disclose information about our condition as we feel comfortable to do so. We could offer limited, person-specific understandings rather than a fuller picture of our situation. After all, wouldn’t we prefer to be invited to take part in the activities of life (and sometimes have to say no, or leave early) than to be not invited at all? On days when we feel better or have the gumption to push, we will want to join in! It is better that this remains up to us.

What does it really mean to understand someone else’s experience anyway? Let’s take a look around ourselves. What is going on with our friends, our family, our colleagues? Can you really understand what your neighbor going through a difficult divorce feels? What about your friend with an eating disorder? You may not even be aware of it, or the extent to which it governs her days. What about the couple you know who have been desperately trying to have children, who are now participating in the impersonal, drawn-out gamble with science in hopes of conceiving? What about friends who have lost a spouse, a parent, or even a child? Can most of us say we understand?

More likely we are guilty of avoiding someone in one of these situations because we do not know what to say or how to act. We probably feel badly for them, and the thought of facing their problems makes us feel more uncomfortable.

I am not pointing this out to say that we are self-centered buffoons for wanting understanding, while we ourselves are unable to understand others’ life experiences. Rather, I would like to suggest that (1) understanding another person’s experience is something rare, and (2) that sort of understanding may not be crucial to being a good friend.

Unless you are going through a similar experience (and sometimes even if you are), deep understanding of someone else’s experience is difficult to achieve. However, I also argue, it is not necessary to have first-hand knowledge of what it is like to have lost a child, for example, to be a good, supportive or loving friend to someone who has. But think how much easier it would be if your friend provided guidelines about what helps the most, and the areas that are most sensitive. Well, by knowing yourself and accepting your current needs, this is precisely the sort of information you can provide for your friends, to make their job as friends easier.

Self-Understanding Is Key

So rather than longing for understanding from others, the critical thing may be to understand yourself and be able to communicate that picture to others. How people will treat you is largely up to you — and your behavior. The more you are able to recognize your own capabilities and limits, know your preferences, and are familiar with your audience, the better able you will be to do this.

Recognizing your own capabilities and limits helps communicate to others enough to receive an understanding response. While it is likely that your abilities will slowly increase as you find ways to pace and adapt, it helps to know what you are able to do right now. When unable to finish something as planned, we may feel the hopelessness that often comes from struggling with chronic illness. But healthy friends also complain about their own slowness. “That’s not the same thing!” you protest. And I agree, in many ways it is not, and certainly not to us. But keep in mind that most people have competing demands and often say “no” for all sorts of reasons. This sometimes gets blurred by people with chronic illness who are so eager to be able to say yes. Your “no” or “not yet” is not viewed as harshly as you probably view it yourself.

Knowing your preferences makes it easier for everyone involved. The best way, I have found, to figure out how various factors affect you is to keep careful notes. Create a simple worksheet to record the most important variables of each day and measures of your experience. As you become well informed about the effects of say, noise, light, temperature, activities, movement, and lack of movement, you are in a much better position to keep yourself feeling better. The less control you have over your environment, the less you can affect these things. But at least you can plan your day. If, for example, you know the supermarket is always too cold and bright — wear extra clothes and always have a pair of sunglasses handy.

Plan Ahead

Know your audience enough to see what they need to know. While you would not call ahead and ask your grocer to darken or heat the market, you certainly can ask a worker to help load groceries in your car. If you do not want to offer a long explanation, tell him you suffer from arthritis, a well known and thus more acceptable condition. As for friends, it is up to you how much you wish to reveal. For those you are the closest to, you could offer written material (there is now so much out there!). Start with something short, like a pamphlet. You may be surprised how much close friends and family members may want to read about your condition. This not only provides background on your condition, but has the legitimacy of science behind it. Otherwise, it is up to you how (or if) you want to explain your own experience. You may tell friends that you suffer from pain and fatigue, and that while the symptoms fluctuate, your overall condition will not deteriorate. See how they react. If they seem interested in helping, you could explain what types of things affect you most, and the simple things your friends can do to make your life much easier (such as opening heavy doors, lifting or carrying heavy objects). Most friends will be happy to do the simple things that can make a huge difference to your well-being. It is more complicated with coworkers and casual acquaintances, with whom you may not want to share intimate details of your life. But you do not have to. Reveal information only when it becomes relevant. If you are lacking a good chair: you can explain that you have back trouble and need a supportive chair. It is not necessary to explain fibromyalgia to everyone. If a line is too long for you to withstand, you could ask for a supervisor and explain that you have a neuromuscular pain condition and need special consideration. Select an explanation that fits the situation. Try to figure what you can comfortably ask of people. Always keep your requests simple and show lots of appreciation for any effort taken on your behalf.

Applying this at work may be the most difficult, where deadlines are likely to be less flexible. Of course jobs vary significantly in this regard. It is your call whether you want to share your disability with your employers. But either way, your boss or clients do not need to learn the details of your disability — but just enough to accommodate you. You will have to engage in a careful balancing act between trying to achieve the work environment you need and not putting off people with fears that you are unable to do the job. This makes knowing your abilities crucial. If you have a clear idea of what it would take for you to do a job, and what you may need in the form of special considerations, you can be straightforward. Not apologetic. Not demanding. In most situations where you need special assistance (helpful gadgets, rest breaks), your employer is legally obliged to accommodate you. When you are comfortable with your own needs, it becomes much easier to communicate them, and without self pity or bad feeling.

Applying this in social situations should be much easier. After all, social engagements are supposed to be fun! While this sounds like an obvious statement, how many times are we exhausted by spending time with our friends? To some extent, this is inevitable. But we can play a hand in reducing the stress of interaction, and increasing our pleasure and enjoyment. Because we have limited energy, the first step is prioritizing: select the engagements you want most to attend and decline those that are less important. For those you will attend, think about what would make it easier for you? First, what can you do to make yourself most comfortable? (My bag of tricks always includes ear plugs, a heat sack and extra medications). Second, if you are going to an event with others, what would you like them to know? It may help, for example, to check whether the driver would mind leaving somewhat early. Third, what can the host or hostess do to increase your comfort? Call ahead and find out enough about the environment to help you prepare. Then, if there is something that would make a significant difference, explain it simply. For example: ask, “if I am feeling bad, would it be all right if I go into another room for a few minutes to lie down?” Creative backup plans can help you feel more comfortable about participating. Remember, everyone would prefer that you feel good! If your request creates only minor inconveniences for others, most people would be happy to pitch in (especially if you show your appreciation.) Finally, leaving early also keeps experiences more pleasant. As my grandfather always said, “never stay too long – it keeps people wanting more.” And they always did!