station real me

Let's be honest, one of the biggest challengers of chronic pain is learning how to live with others. Sometimes it seems more comforting and easier to stay home alone, where we can set our own pace, tend our pain and control our environment. This sets us free from making up excuses, feeling guilty, ashamed, or having to explain how badly we all feel. It gives us a chance not to impose on a healthy person's life space. It gives us respite, and loneliness but in a way, a sense of relief.

This is a daydream however because most of us HAVE a life and WANT a life and need to be involved in life, social experiences, and travel which all remove us from our little shelter away from the world. This fantasy, however, has some major flaws! What does it mean to have a life? We all want social interaction, to be able to work, to travel to have fun and be able to leave our little nests of security which shelter us from the outside world. But without suffering from chronic illness, very few of us would choose to live the life of a hermit. It is difficult for us to find ways to maintain our relationships, without terrible discomfort, pain and exhaustion. All the little things we once took for granted like going on a trip, entertaining for supper, working for the church, baby sitting, playing the piano and so forth drain us of our precious energy and yet most of us do not want to forego our lifestyle. We press on and so we should. However, in order to make things easier, here are some tips for you to follow.

Although most people who are sick want to be taken care of, people with chronic sickness struggle to retain their independence and are reluctant, usually, to burden others or call undue attention to our sickness. Finding unselfish ways of living with your family, tending to THEIR needs and still living within your own capabilities is like walking through a mine field.

Learn to say no. Just get rid of all the activities you don't value and that you know do not require your participation. A polite thank you and a polite decline is fine. Ordinary people cancel for many reasons and our excessive fatigue and pain are legitimate reasons. Try to weed out the negative people in your life who drain you rather than add pleasure. Preserve your precious energy for important things that are dear to you. If you have to, pay somebody or get a friend to help you with housecleaning, grocery shopping etc., which will free you for tasks that are more fulfilling and worthwhile.

If you find it impossible to refuse somebody, put a time limit on the amount of time you can spend on the project. If you set your guidelines, people will soon get the point.

Be prepared for activities you intend to participate in. Make sure that you have access to comforts you need when required. IE: Medications, heating pads or pack, pillows, earplugs and sunglasses, sports rubs. Try to really think about the conditions of where you are going and to really have a checklist concerning the temperature, what kind of seating, lighting, length of time you will be there etc.

Learn to say it like it is. To be simple, direct and of course polite. People mostly want to help but many times simply do not understand. Many of us are reluctant to allow others to see our misery and push ourselves beyond and above the limits in order to be a "warrior." Forget the warrior attitude and start understanding your illness and limiting your time and involvement. Prioritize what is important to you. It may be worth standing in a reception line to YOU, while to another the agonizing fatigue and pain from standing would not be worth it. These are choices that you alone can make but choices that should always be considered.

Asking for special help from others which seems simple but which greatly helps us is so difficult. Like asking for help in carrying heavy packages. How many of us simply go ahead and do it, forcing our aching bodies to be valiant and brave, only to suffer later and remain in great agony for hours. Is it worth it?

The other extreme is deciding to play the martyr. To keep silent and endure great pain so as not to create notice, a scene or bother other people. The other side of the coin is depending too much on people and expecting a spouse or family member to become a slave to YOUR illness.

Because of the intensity of our pain, we feel entitled sometimes to preferential treatment. But remember that people do not always understand this and that often we look in the best of health when we are suffering the most. Few of us depend entirely on others and few of us consistently use wheelchairs or other props that elicit sympathetic reactions. We are not out for pity, we need understanding and consideration. Remember that being helped is not an act of charity as is so commonly thought, but somebody helping out another human being in need. If we demand things and EXPECT too much, then people will be less likely to have sympathetic or empathetic feelings for us and for all others suffering from this disease. If we expect too much of our children, our husbands, we are not going that extra mile to try to give them a decent life style which they richly deserve. Just because we are sick does not make us lose our maternal instincts nor should we stop being wives to our husbands. Prioritize and use your precious energy for people who need and deserve it the most.

And, if we focus on how much we appreciate their love and support, others will be more likely to oblige as well.

Out of control pain and fatigue is frightening to all of us. Many people have preferences but our preferences most of the times are genuine needs. When pain hits, we are no longer working only with what we want but what we need.

Many of us have severe conditions and one of the most valiant things we can do is to try to be flexible. We have to remember to show love and respect for others and ask how the changes or our needs may affect them. We are not the only people in the universe because we are suffering from pain. It is extremely important for our families to be able to understand what makes us feel better or worse. They, after all, do not wish us to suffer more. But these are the people most affected by our suffering and when asking of them, do not dwell only on your own needs and always ask them about themselves and how you can help THEM. Pain is not reserved for people with FMS only in this world. There are many people with many difficult conditions suffering from pain, and there are people dying from Cancer who are in chronic pain as well. It does not make our pain any less severe but it is hoped that you will understand that there are other people less fortunate than we are, and of course, conversely, more fortunate. Remember that even your close ones could start to resent numerous constraints on their behavior. Some of our spouses have endless patience and tolerance, while others are more easily frustrated by the pertinacity of our condition. This is not a one way street. Remember to keep abreast of the needs of those close to you and try your best to make sure that you are doing your part when you can.

Our suffering is hardest on those closest to us. For our difficulties become theirs and it is a very difficult situation for them to be in to watch a loved one suffering this way. Just as we crave a break from pain, so do our families from hearing about illness and pain. This is not to say that you don the martyr's gown, but that you should strive to create a balance for the sake of your children and spouse. Try to talk about other things than your illness. Do you know how boring it is for other people to listen to our complaints, our pain and our symptoms? Introduce topics that are unrelated to your medical condition. Focus on the positive and distract yourself and other people by being the bright shining star that you still are within your heart. Remember that it must be a terrible drag for others to have to hear about your constant illnesses and pain day after day and understand that they too have lives to life. Let them know how you are doing and MOVE ON. Just because we suffer does not mean that the rest of the people in our world have to also.

Some of our families may not be able to assist often because they may not be able to face that you have a real problem. Some may be skeptical because of all the stories about FMS being in our heads, that it is a waste basket diagnosis, and some others may find that the medication causes you to be fuzzy headed, and unlike yourself and may object to the treatment of high doses of narcotics and medications for various reasons. For these people, and for yourself, education is the key.

Children may really suffer and be afraid to confront their parent's vulnerability but think of growing up as a child and hearing that Mom is sick in bed, or cannot talk to you , or watch Tv, or go outside, or take a walk, or make dinner today, and tomorrow and the next day. Remember your children!

The challenge of finding ways to live with others when one is suffering is huge. There are ways that you can help yourself. Wellness Train has a plan that is designed to do just that. On our links page you will find information to read and share. You can get involved with the TRAIN by starting a support group in your area, by being a moderator, by writing for the Healing Station, by doing a myriad of tasks for others, thus taking the focus off your own illness. Distraction does help.

1. If you find it hard to type, then get voice-activated software installed on your computer.

2. A telephone headset allows you to be comfortable, and to talk on line relaxing in your chair or on a couch.

3. Use your heating pad and a micro-wavable heat pack as two of your best friends. If you suffer from stenosis, neck nerve entrapment or other back problems, alternate with a cold pack (covered with a cloth) and a heat pack or heating pad. Make one from a pillowcase or a tube sock, pour in several cups of dry, raw rice, and tie the sock or pillow case closed with a good solid knot. You can make a more attractive one of you are a sewer, a painted can decorate hers with fabric paint and so on. Make one extra long so that you can really wind it along your neck and all of your shoulders. Heating in the microwave depends on the size of your heat pack, and the efficiency of your microwave. Usually the time allotted is about two minutes until it reaches the perfect temperature to relax muscle spasms. You can also wrap a towel around the hot pack to retain the heat and make it last longer.

4. Electric Stimulation Units There are two types both sends electric impulses from a machine through wires and electrodes to your body. If you find it helpful, try it at a physical therapist/s office first, you can rent or buy them. The TENS unit is walkman sized and you can clip it to your pants or fit it in a pocket and the other stimulation is a home unit and is interferential electrical stimulation. These machines are somewhat larger. The main difference between a transcutaneious and interferential is the type of wave form and stimulation it provides. For some people they do little or nothing and others swear by them. Prices vary, so its better to shop around if this aid helps you.

5. Pain Medication - Pain relief is a quintessential part of a total wellness program for people who experience chronic pain. Of course medications work differently for each of us and it often takes various tries to find the ones that work best. For some, narcotics are needed to reduce pain enough to function. Unfortunately physicians are often hesitant to prescribe strong medications for chronic pain. If your physician is not open to including necessary medications in your treatment program, find one that is! Medication that improves sleep can also help relieve pain. Work with your doctor to find the optimal medications to reduce pain and improve sleep and functioning.

6. Massage therapy - Many excellent massage therapists are now familiar with FMS. For some, Swedish or myofascial massage provides a real, if only temporary, relief from muscle pain. Unfortunately massage therapy tends to be quite pricey. If you can afford to have regular appointments, it may be well worth the expense.

7. Keeping a Diary: This is very helpful for some people. It is important to try to keep track of the quantity and quality of sleep, your moods and depression levels, drugs and dosages, activities accomplished, exercise performed, weather factors and pain levels. This helps you to develop a really good schedule from which to work with to optimize your best days.