Wednesday, September 9, 2009

Article on How to Help

I'm still laid out with this virus and can't do much. I'm trying to pace myself. It's been rough but I'm hanging in there. I've stopped Valcyte and started taking colloidal silver yesterday in the hopes of stopping this virus in its tracks and give my body a break from Valcyte. I think its helping because I'm able to post this today.

I found this article I had saved some time ago but have no idea where I found it so I can't cite the source.

It's hard to know how to help people like us but I found this article to be a good one.

I'm behind on emails, blogs, blogging but hope to catch up soon. More later this week (I hope)...

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A View From Outside: How To Help A Person with CFIDS (PWC)

by Jean Mosher, R.N.

Twenty-five years ago I was working as a private duty nurse, and it was at this time I met a family member of one of my patients. She was very energetic and involved with life and is the most creative person I know.

As I recall, she had been diagnosed with myasthenia gravis and other assorted illnesses. Nothing was clear-cut and no definitive diagnosis was made for a very long time. It took some 12 years for that to happen.

As our friendship grew and I learned more about her medical history, I heard of the disease that was then called Chronic Epstein-Barr Virus, now referred to as Chronic Fatigue Syndrome CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Although Iam the nurse, I have learned a lot from my friend, now supposedly "the patient."

Observations About Energy: "Talking Hurts"
CFIDS is an all-encompassing and all-consuming disease. I hear about and have seen the consequences of brain dysfunction and the inability to comprehend simple information. Ordinary tasks in cluding walking can be very arduous for a person with CFIDS (PWC). It is not at all unusual to lose muscle strength and fall at any time. I have seen this in my friend. I hear that energy is very valuable, almost a gold standard for these patients. The energy it takes to even talk on the telephone is not easy, complicated by the persistent sore throat. Talking hurts. There are sleep disturbances. Going to bed does not mean "going to sleep." I hear of nights that no sleep was possible or, more usual, finally getting to sleep about 6 a.m. She also has times where her sleep is disturbed and can wake every couple of hours. After sleeping 10, 12, or even 14 hours, she still is exhausted. Sleep studies seemingly have documented this disturbance but relief does not seem to be within her easy grasp.

Finding a time to visit a person with CFIDS also is difficult. If the person has some energy, it may be more important, as they prioritize their time, for them to take a shower, feed themselves, do laundry, when possible, or see doctors. Social interplay takes work. Perhaps only one or two requirements for daily living can be accomplished and the remainder put off for a later date. I have found that people who are that ill usually do not use energy to make telephone calls for help, for they are too debilitated and are in bed.

A busy week for my friend would be to have three days outside the home, perhaps taken up with medical appointments. The rest of the week she is in bed. A good day would be to have enough energy to accomplish something for a two-, three-, or (pushing) a four-hour period in one day, including eating a meal and the preparation that goes with it. There are times my friend is too ill to eat, because as she explains it, it takes too much energy to prepare meals. Money is tight—and fast or prepared foods not an option.

Times of the year are also very important for my friend. The amount of sun and the temperature of the day have significant repercussions, as do the sudden barometric pressure changes. She does better when it is warmer and there is more light; she suffers from Seasonal Affective Disorder. This seems to aggravate the CFIDS symptoms.

What Friends and Family Can Do
How to help as an outsider? To help a person with CFIDS is not to say: "Call me if you need me." That call most likely won't come. No energy to reach out. To help is to enable independence, recognizing that every motion is energy and little energy is available. Doing shopping, picking up prescriptions, doing an errand, making a meal are all valuable aids for anyone with CFIDS. Even offer to change a bed or clean. Help make phone calls, mail a letter, or offer to fill in forms when necessary; any little thing to a well person is a mountain to climb for a PWC.

It took time before I understood the brain dysfunction. At first I felt rejected, especially when my calls were not returned. I was looking at the relationship from my own perspective. I made a call; I expected a return call. I was a slow learner, but eventually, I came to understand when my friend would say she couldn't process information. Her brain had effectively shut down and she knew what she was talking about. There have been many times she was too ill to speak on the phone. I learned to respect that and now check with her when we settle into a conversation. Sometimes it will start out fine, and a few minutes into it, she can't follow all the details and will tell me she "can't compute." I have learned this is part of the process of the illness and no longer take it personally. I have also learned to listen to her and realize that as much as I may need to talk, I will wear her out and she will not hear anything. She will call me when she has the energy. Our friendship is not a one-way street, but a crooked road I have learned to negotiate.

Navigating The Crooked Road
Over time, I have come to understand the language of CFIDS. Everything seems to be mea­sured in energy units. When I tell my friend of how many miles I have walked to get some­where, she is exhausted just relating to it. I would suggest that others be sensitive to CFIDS lifestyles and the need for flexibility. PWCs do not always know when they wake up what the day will hold for them. Their lifestyle has been dramatically affected, if they have a life at all. I have worked with cancer patients, and I see them doing better than the CFIDS patients I know. Still, while this illness may put limitations on my friend, our honest communication has not diminished our friendship, or the essence of her.

To be a friend, I call regularly. I understand that if I get the answering machine, my friend can either be out, or out of it. Our mutual under standing is that she doesn't have to feel pres sured into returning my calls, and I want her to know I call to check in so she knows someone cares.

Be a friend to a CFIDS patient. It is worth the work. It takes flexibility, understanding, and patience, but it is worth it. It is not enough to be willing to help, you must act on that willingness. These are not dispensable people, but rather people who cannot be dispensed with. The spirit of a person never really leaves them, whatever their physical condition, and if the friendship is built on that and on love, you've got a winner.

9 comments:

  1. This is a great article, especially this piece:

    "It took time before I understood the brain dysfunction. At first I felt rejected, especially when my calls were not returned. I was looking at the relationship from my own perspective. I made a call; I expected a return call.... To be a friend, I call regularly. I understand that if I get the answering machine, my friend can either be out, or out of it. Our mutual under standing is that she doesn't have to feel pres sured into returning my calls, and I want her to know I call to check in so she knows someone cares.

    Be a friend to a CFIDS patient. It is worth the work. It takes flexibility, understanding, and patience, but it is worth it. It is not enough to be willing to help, you must act on that willingness. These are not dispensable people, but rather people who cannot be dispensed with."

    Absolutely, 100% agree with this. You are indispensable and the the most important person in the world to me. The love, support and unbelievable kindness that comes from your gentle spirit is more than worth any extra work I do.

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  2. Just wanted to send you my greetings and warm wishes.

    Last night there was a particularly loud cricket singing outside our front door. We dubbed it "the Caruso of crickets."

    I appreciate the song of your experience whenever you are able to sing.

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  3. This really is a good article. I hate the phone for the most part because when I suddenly run out of steam, I can't get across that I have to stop NOW. It's 'let me tell you one more thing' and I'm exhausted. It's easier to talk to the very few people who understand this problem when I can. And yes, something as simple as saying 'I'm going to the store. Tell me what you need and I'll get it' or 'I'm coming your way. If you're up to it, I'd like to stop in and put in a load of clothes to wash and change your sheets, if you need that. Then I'll leave.' My sheets haven't been changed in a month now and I can't do it right now. How I would love such an offer.

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  4. Great article -- I'd love to re-post it b/c it really does articulate some of the things that are so hard about CFS.

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  5. This is such a good article, Terri. Thank you so much for sharing it with all of us. I so wish I had someone who would be willing to help Joel and I. Recently we had a family crisis and ended up watching our newborn granddaughters for 3 days. My practioner said, call your support group for help...I said, we don't have a support group here. Our son drove 2 hrs up here freeing his schedule to do so and helped us out. What we felt when he did that is hard to describe....anyone who can reach out to those who are chronically ill will be appreciated so greatly.
    Thanks again Terri

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  6. Wow, what a perfect picture of life with CFS Jean Mosher's article is. What a gift those with CFS who are her patients and friends must have in her, as she truly understands how to help and how to continue in friendship with a person living with CFS.

    Thank you for sharing this article in spite of feeling lousy. Would you mind if I share the article on my blog and link it back to you as the source?

    As the author of this article said, the spirit of a CFS patient does not change. I find it inspiring that though feeling extra lousy right now, you managed to post this awesome article to share with us.

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  7. Thank you for posting this, Terri. Wishing you good health...

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  8. I was concerned about you. Nothing for three weeks. Let your online friends know how you are when you're up to it..okay?

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  9. Thanks for sharing and I hope you are doing better these days. I am sorry to hear about Tiger Lilly.

    Your are in my thoughts and prayers

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