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Good Days…Bad Days With Maureen Pratt

Good Days…Bad Days With Maureen Pratt

Struggling to Have a Good Day?

posted by mpratt

Maureen Pratt Author PicEverybody’s happy! Everybody’s active! Everybody’s…NOT!

When you don’t feel well, the struggle to make something, anything, good of a day can be exhausting and frustrating and, well, quite frankly, impossible. And yet, between those who say, “You have to have a positive attitude,” and those who declare, “It’s all in your mind,” you might feel as if the inability to lift your mood and get on with life in an uplifting manner is a huge failure on your part. And that feeling of unworthiness might sink you even lower.

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Yes, the struggle to have a good day can be frightfully challenging and, I dare to posit, completely unproductive.

There will be days that just start off wrong and go downhill from there. There will be days when, despite our best efforts, we bungle the simplest of things and can’t even begin with the more complex tasks.

There are some days when stepping outside takes a herculean effort that saps us of all other energy.

As one who’s fought the very good fight for years, I have learned more than once that struggling through a day when pain is high and illness is flaring can bring more pain and certainly more frustration. So, I try to remember, on a bad day, sometimes the best thing is just to relax and let it unfold. Rest and let laundry or errands wait another day. Take care so that we may prepare for a better day tomorrow or the next.

Being kind to ourselves is not advertised or studied as a remedy for the illnesses and pain we suffer. But it is important; if we are not kind to ourselves, who else will be? And if we don’t allow our bodies and our spirits to retreat and revive on a “bad day,” when will they?

Blessings for the day,

Maureen

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Lupus: Relationships and Us

posted by mpratt

Maureen Pratt Author PicLast week, some friends of mine participated in a lupus event, and they invited me to come with them. I cannot tell you how wonderful it was to see their caring in action. Truly, the benefit of being enveloped by people who accept and care about you is priceless!

I know there are many lupus patients (and others with chronic health conditions) who may not be as fortunate as I am. Certainly, I have heard more than one person say, “No one understands,” or “Everyone just thinks that I’m making it up.” It has to be devastating, when you’re living with a serious illness or ongoing pain, to think that you’re not only alone in the fight, but that those around you, whether family, friends or co-workers, might actually be antagonistic toward you, or do things to aggravate rather than help you.

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What makes relationships work, when one person has chronic illness? What makes family and friends rally, or behave negatively? And, if someone lives with a difficult situation vis-a-vis friends or family, what can he or she do about it?

These are complicated questions, as relationships are, themselves, complex. But here are some suggestions from my own experience:

1.  We cannot control the emotions of other people, but we can control how we react to them. Early in my diagnosis, I experienced a great deal of loss, especially in terms of friends. Some people simply cannot be around people who are ill. Others “compartmentalize,” that is, they view someone in a specific way (“the friend who goes hiking with me,” “the friend who parties”) and when that person can no longer do what it is they used to do, these narrow-living people drop the friendship because it no longer “works for them.” The losses of friendship that we suffer are sometimes hard to bear. But they also enable us to reexamine the relationships we have and to nurture those that are truly good. So, often, instead of trying to fit a “square-shaped” friendship into our newly diagnosed lives, we have to let go and move on.

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2. Early on, I did not try to hide my illness, but rather asked family and friends to learn about lupus with me. I asked my mother to meet my doctors and invited her to ask questions of them directly. I truly answered questions like, “How are you feeling today?” or “What is a flare?” with specifics, so those who cared could begin to understand. If we don’t communicate clearly and honestly, there is no way we can expect others to “get” lupus or any other disease, let alone assist us on the journey.

3. I worked hard (and still do) at making sure that my relationships did/do not become “all about” lupus. Yes, friendships and family relationships are two-way streets, and we have a responsibility to support, lift up, pray for, and enjoy the company of the wonderful people in our lives. If we are perpetually turning the conversations around to ourselves, focusing activities only on what we cannot do, or being a “wet blanket,” then it’s no wonder that relationships will be a challenge to maintain. To have friends, we have to be friends.

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4. Lupus can definitely make us lupies rethink who we were and who we might become. That is, for those of us whose diagnosis came at a time when we had “other” plans, we might feel completely at sea and devoid of identity in our new, post-diagnosis lives. I think that’s one reason why relationships might end and others begin, especially in the early stage of diagnosis and life with lupus. Lupus does change us. For example, I’ve found myself much more vocal about my faith, God’s wonderful presence in my life, and ways that that faith sustains me during the bad and really bad days. Some people are comfortable with this. Others are not. But, that doesn’t change how I feel about expressing myself!

When I was writing my book, “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life,” I spoke with a Jewish rabbi about his perspective on faith, spirituality, and living with chronic illness. One of the things he said that has echoed in my heart and the talks that I give about life with lupus is that, just as we wouldn’t eat or drink poison, so too should we be vigilant about any relationships that might be toxic to us. The relationships that undermine our health, well-being, spirit and emotions are dangerous to us, and we need to steer clear (or find a way to protect ourselves) of them.

In the same way, those relationships that are supportive, uplifting, and that bring love, light, and laughter to our lives are true treasures – and exactly what we need to keep our spirits up and our health humming as best it can, even on the worst of those “bad days.”

Blessings for the day,

Maureen

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Lupus: Coping Skill # 2

posted by mpratt

Maureen Pratt Author PicWhen I was diagnosed with lupus, I found it extremely helpful to immediately organize all the information, appointments, and other things pertaining to life with the diagnosis. That, then, was my “Coping Skill # 1.”

Next, I set about finding out as much as I could about lupus, and especially how it was affecting me. Thus, Coping Skill # 2 was: Education

I was diagnosed before the Internet was as powerful as it is today. So, I turned to books (especially “The Lupus Book,” written by Daniel J. Wallace, MD) and information provided by my physicians and organizations such as the Lupus Foundation of America (www.lupus.org). I also found my pharmacist extremely helpful with explaining the various medications I had to take.

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Now, of course, there are myriad websites, blogs, and other venues online where lupus patients, medical professionals, and others perhaps not as well-equipped or knowlegable, meet and communicate day and night. Some of the information given is good, some of it is not, and it’s a huge challenge all by itself to separate the proverbial wheat from chaffe.

For me, it goes back to my original sources: My doctors, credible lupus-related organizations, and my pharmacist. Also, for “how to live with it” kinds of advice, I’ve also found the wisdom gained by older lupies to be very valuable. I try to encourage other lupies to get their information from these sources, too, because inevitably, each person with lupus will encounter completely wrong information and, sometimes, very persuasive (read: pushy)people who insist they know better than any “credible” source.

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Even now, I get unsolicited advice from people who insist that “there’s a cure your doctor doesn’t want you to know about,” or “there’s a country where they cure lupus” – both statements are incorrect.  Some people say “there’s a lupus diet” (there isn’t), or “you need to boost your immune system” (bad idea because in lupus, the immune system is already boosted). And, I’ve also had people tell me, “you’re not cured because you’re not faithful enough to God” (hugely wrong-headed and completely opposite the point of living with a chronic illness).

For all of those statements, and for all the information I need to know, I go back to my credible, up-to-date sources. If knowledge is power, then the right knowledge is even more so!

Blessings for the day,

Maureen

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Chronic Illness and Pain: Are You Prepared?

posted by mpratt
Image courtesy of nuchylee/FreeDigitalPhotos.net

Image courtesy of nuchylee/FreeDigitalPhotos.net

I’m behind on my blog postings, again! Not because I didn’t want to put fingers to keyboard. Oh, no. Yesterday, the power in my neighborhood went out. Four times! My exercise consisted of walking around to reset my clocks – four times! And, I had to recreate work that I’d been typing into my computer – four times!

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Four-tunately (sorry for the pun), I’m a native Midwesterner whose habit of being prepared for the unexpected weather- or other-events was borne of experience with tornadoes and other things that could truly upend power and other utilities we depend on. So, yesterday, although most of my day was one of fits and starts and stops, I did have ample batteries to power my portable radio and flashlights, a telephone that worked, and the foresight to plan for meals that didn’t require a working stove or oven.

For most people, power outages are inconveniences and nothing more. But for we who live with chronic pain and illness, they can be more than just an “oops” during the day or night. Which is what has led me to write this blog – a gentle reminder, of course – to ask, “Are you prepared?”

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If you take medications, do you have extra, in case there is a natural disaster and you cannot get to a pharmacy for refills for awhile?

If your meds require refrigeration, or you need medical equipment that relies on electricity, do you have a back-up in case the power goes out for a long time?

If you live in a building with an elevator and/or electrically-operated door to the parking garage, do you have an “out” if these aren’t working (or someone who can help you)?

Do you have the “usual” emergency supplies – batteries, food, water, thick-soled shoes, etc. – and are these reachable in case you need them?

Do you have a way to communicate if power lines are down? Do your neighbors (or apartment building manager) know that you might need their assistance if an earthquake or flood occurs?

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Are you in the best shape you possibly can be, in case there is no one who can assist you if a weather emergency occurs?

Have you thought through the scenarios that might pertain to severe weather or other conditions where you live, and have you reached a strong, resilient spiritual place as far as your ability to meet these challenges if they occur?

These are just some of the questions you might ask now, when the weather is cooperative and there is no emergency. I know, it’s easy to push off planning when life is just humming along. But it’s exactly at times like these when we need to prepare for times like those.

Now, I’m going to “file” this before the power goes off…or not…again. Yup. This time, I’m prepared!

Blessings for the day,

Maureen

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