Category — General
Sleep, Sleep, Sleep…
There is so much I want to do.
There is so much I want to say.
My body, however, won’t cooperate with my wishes… and that’s OK.
No matter how much there is to do.
No matter how much there is to say.
It will all have to wait for another day.
Right now… all I am concerned with is getting some sleep. No matter how much I’d rather be doing a number of other things, I need to listen to my body. It is screaming out for sleep. So, I am going to listen. Off I go to do just that…
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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January 10, 2012 2 Comments
Happy 2012 New Year!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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December 31, 2011 4 Comments
Music For Healing…
Music has always been very healing for me. I decided to share some video clips of songs that I like. Perhaps you’ll find them soothing and/or pleasant too. For those of you celebrating holidays at this time of year, I hope you enjoy them and that your symptoms are as manageable as possible.
For everyone… I am sending peaceful thoughts your way!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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December 23, 2011 2 Comments
Mountain Climbing Time!
When I speak of mountain climbing here, I am not referring to the literal climbing of mountains. (Though I must say that it may feel literal to those living with chronic illness!) Instead, “mountain climbing” (as used here in a figurative sense) refers to the various obstacles, challenges, and difficulties that face people living with chronic illness/pain. Following up on what I wrote recently here, this can be an especially challenging time of year for people living with chronic illness(es) and chronic pain.
Ask any person living with chronic illness(es) whether they sometimes feel like they are “climbing a mountain” and I think the odds are good that you’ll get an affirmative response. After all, there are days when simply getting out of bed in the morning feels like climbing a mountain. For others (who are bed-bound due to their illness), getting out of bed each day isn’t even an option at all. So “mountain climbing” (both the mental gymnastics required and the physical concerns that must be dealt with) seems like a good way to sum things up for many chronically ill patients I have gotten to know.
While I know that some people who read this blog don’t celebrate holidays at this time of year, I know that many other readers do. So, I wanted to take a moment to talk about some of the special challenges that this time of year can sometimes hold for those living with chronic illness.
For some, this time of year involves extra activities or changes in routine such as buying/making gifts, baking, sending greeting cards, traveling, operating on less sleep than usual/needed, and attending gatherings where people may be wearing fragrances that trigger symptoms (i.e. for migraine or multiple chemical sensitivity patients).
So, how can a patient best deal with the extra stress that can crop up at this time of year? Well, that obviously depends upon the person. However, there are some general ideas that I have discussed with fellow patients over the years that may be helpful to some. There is nothing particularly profound here. These are just a few general suggestions that some might find helpful as they work to strike the balance necessary to participate in various festivities/traditions without compromising their health in the process. These may also get people thinking of other ideas for reducing stress (at holiday time and beyond).
If you are exposed to a fragrance, it makes sense to consider the option of leaving early (as unfortunate as that may be if it happens). Multiple chemical sensitivity patients often avoid entertaining in their homes to prevent fragrances from entering their homes (i.e. their “sacred zones”). For most MCS patients, home is the only place that’s a safe zone.
I’ve never climbed a mountain in the literal sense. In years past when I was healthier, I did a bit of hiking but certainly nothing that would qualify as mountain climbing. In the figurative sense, though, I’ve been “mountain climbing” every day since I was 13 years old. “Mountain climbing” is tiring. It can be frustrating. It can leave you sore. However, with some planning and organization “mountain climbing” can be easier than it would be otherwise. Don’t forget to rest when you can and ask for help when you need it. Overdoing can cause very undesirable results.
Just as the spectacular view from a mountain’s summit can be a great reward for the effort expended to get there, so too can it be very rewarding to be able to attend a gathering or maybe even travel to a destination to spend time with loved ones and friends. With some planning (and luck!), holiday-related stress can be reduced and out-of-the-ordinary experiences can work out quite well.
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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December 14, 2011 2 Comments
Bouncing Back: Five Tips To An Easier Recovery
Bouncing back can be difficult. This post is about recovering after activity that is unusual (i.e. in type or amount) and which triggers and/or worsens symptoms – including pain and fatigue.
Following up on this, I’m talking here about dealing with the fallout that can occur for a person living with chronic illness who has:
Basically, I’m talking about recovering from being more active than usual and/or from being exposed to circumstances that may cause significant stress (such as interacting with people who don’t “get it”). Holiday gatherings may involve foods that trigger symptoms and it may be difficult to avoid them entirely. There are many factors that can set a patient up for exacerbation of symptoms after the holiday or special event has passed.
Any chronic pain patient can tell you about the “crash” that inevitably occurs after the unusual activities. Typically, only those living in the same household as the patient get to witness these “crashes”. It is very common for friends and loved ones who see a patient functioning at his/her peak to be oblivious to the fact that there will almost certainly be paybacks later. (In other words, just because I joined you for an all-day gathering doesn’t mean I won’t be bedridden tomorrow as a result)!
This post is about bouncing back from challenging events such as holidays. For people living with chronic illness and chronic pain, events that are taken for granted by others can be absolutely challenging and exhausting. It’s that time of year when there may be more triggers than usual.
For a person living with migraines or multiple chemical sensitivity, fragrance worn by others can serve as a trigger for symptoms. For those living with infertility, the holidays can bring gatherings with young children or babies; this can be very difficult. For a person living with interstitial cystitis, vulvodynia, or endometriosis it can be painful to sit in the car (or plane) for extended periods of time. The list goes on.
Many chronic conditions can result in extra exhausting times around the holidays due to physical and/or emotional stress and a multitude of potential triggers.
Let me state the obvious here – because sometimes it just helps to hear the simple tips that we already know. (There is some overlap between the following categories).
It is easy to feel exhausted, drained and frazzled any day of the year when chronic illness is in the picture. To add the extra stress and commotion that the holidays can bring on top of it can really be overwhelming. Trying to pace yourself and to have realistic expectations of what you can and can’t do (and in what time frame) can be very helpful. If you have done more than your body would have liked, it’s worth it to take the time out to replenish your energy. Trying to run on empty only takes a person so far. Eventually, the body will make its displeasure abundantly clear!
I realize there really isn’t anything that novel/unique in this post. Much of what is listed above falls into the category of common sense. However, it has been my experience that a great many patients take comfort in knowing they are not alone in these struggles and find it reassuring to give themselves “permission” to rest and recover after overdoing. Sometimes it’s easier to give oneself such “permission” when the obvious is stated. Sometimes it just makes it easier to give oneself that time to bounce back after periods of extra activity or travel or very busy schedules. It is OK to take the time to get rejuvenated… whatever methods work for you!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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November 30, 2011 3 Comments
Holiday Suggestions For People Who Are Living With Chronic Illness
Today, I thought I would write about holiday suggestions for people living with chronic illness. Obviously what is helpful for one patient may not be for another. After all, each person is unique. However, I tried to include some themes I have seen arise for me personally and for many of my fellow chronically ill patients.
While we all try our best to be thankful throughout the year, this time of year brings added “pressure” (for lack of a better word) to express gratitude. Don’t get me wrong. Gratitude is a wonderful thing. The trick for many chronic illness patients, in my estimation, is that it can sometimes be difficult to focus on gratitude when pain and suffering are so significant that they make it challenging to focus on it.
I will try to avoid including platitudes that may be less-than-helpful… or tips on how to tap into your gratitude. Anyone reading this more than likely has a good idea of how to tap into that. My hope is that anyone who happens to be reading this (regardless of which country you reside in or whether or not this is a holiday week for you) might come away from this post feeling a bit more confident about setting appropriate boundaries, knowing when to say no (i.e. not accepting jobs/activities/duties that are likely to be detrimental to one’s health), and knowing when to rest.
Also, I believe that no matter how serious one’s health problems are and no matter how stressful the situation may be… there is virtually always something to be grateful for. If you are struggling to identify something, start with the most basic things. Every day on which we each wake up and start with a new slate is a gift. No matter how much pain and suffering one is experiencing, odds are, statistically, that if you’re reading this post you are relatively unlikely to be homeless or suffering from hunger at this time.
Does that mean there aren’t any people reading this who are really suffering in those ways (struggling to meet their needs… not just wants)? No, not at all. I know that quite a few of my readers experience plenty of suffering (of all sorts… including serious concerns about having safe housing and enough food to eat) – as many of them have shared their situations with me “off the blog”. After all… overwhelming medical bills can lead to debt, to difficulty paying for basic needs (such as food), and it can even affect the ability to find affordable housing. So, I don’t mean to gloss over these issues – because I know for a fact, from talking with many of my readers “off the blog”, that these challenges can be alarmingly close to becoming reality (if not already so) for many.
Having nearly lost our house a few years ago (following crushing medical bills for my care), I remember the fear and anxiety that we felt while struggling to save it. Quite literally, I cannot put into words the degree of stress and anxiety that resulted. So, I most definitely do not wish to minimize the emotional pain involved or to dismiss what anyone else is experiencing.
My thoughts and best wishes go out to everyone at this time. Most especially, my thoughts are with those who are homeless. When the temperatures dip as they have already this year, I can’t help but think about those who don’t have shelter or enough food to eat. This Thanksgiving, I will be sending out positive thoughts and energy to those in need.
Finally, I would also like to thank my online friends for the support, information, validation, insightfulness, courage, and humor you display every single day. It is awe-inspiring!
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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November 24, 2011 4 Comments
International Survivors of Suicide Day – 2011
In English, Spanish & French
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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November 19, 2011 2 Comments
Collision: When Judgment Meets Chronic Illness And Pain
If you’re like me, you have read before about the topic of judgment in the context of chronic illness and chronic pain. Perhaps you’ve read about people who were unfairly judged in the workplace. Or maybe you’ve read about people being unfairly judged by their very own family members and loved ones. I personally can’t think of anyone who appreciates being judged by others in this way.
The emotions that may spring up in conjunction with being judged can compound the challenges faced by patients since it can add emotional pain to the physical pain the person already experiences. Sadly, it is not unusual for chronically ill patients to find themselves in such situations. In fact, I daresay anyone who has lived with chronic illness and pain for any length of time can relate. Feeling misunderstood by people in the workplace (assuming the patient is even able to continue in the workplace) and feeling misunderstood by loved ones are all-too-common (and often maddening) experiences for a great number of people living with chronic illness. No one wishes to be misunderstood.
Today, though, I’d like to focus on a different type of judgment (than that of workplace people or loved ones judging the patient). It’s a type of judgment that I have experienced firsthand. Many patients I know have experienced it as well. It’s another form of judgment that can wound deeply and leave emotional scars as remnants.
Judgment from people we thought were “safe”:
While this isn’t the most pleasant subject, I decided to write about it today because I’ve seen it play out in the lives of many people who live with chronic illness. Yet I don’t recall ever seeing it written about. Not in books, not in magazines, and not in blog posts… I’m sure someone out there has written about this topic. I myself just haven’t come across any writing pieces that focus specifically on judgment of chronic illness patients by chronic illness patients.
What happens when judgmental, critical remarks are made by fellow patients? This scenario can induce a different type of pain.
When patients feel judged by other patients (based both on what I have experienced firsthand and what I’ve seen with chronically ill friends of mine) the sense of betrayal can have an especially potent sting. Most chronically ill people that I know are especially caught off guard by judgment/criticism aimed at them by fellow patients. Each patient is unique. What works for one patient may not work at all for another. No patient is in a position to judge another’s choices or treatment plan.
Judgment can mean many things depending on context. I may have chosen the gavel photo above as a visual but I’m obviously not writing about judgment in a legal context here. The “criticism or censure” mentioned in this definition of judgment is the best for for what I am talking about. The phrase “sit in judgment” listed there (under part b for “to assume the position of critic”) is what I am referring to. Essentially, the notion of criticism is key to what I would like to discuss. I’ve seen fellow patients become downright bossy regarding what they see as the proper course of treatment for me. (Never mind that it’s my body and that I don’t like it when people talk to me as if I don’t know how to advocate for myself). What patient likes to feel like she’s expected to obey a fellow patient regarding treatment options for her own body? Certainly not me!
Personally, I think when one person feels “bossed around” in this way by another, it can be poison to the relationship. Unfortunately, it is not all that uncommon for people living with chronic illness to judge and/or criticize one another (whether overtly or in a more subtle fashion). Clearly this can be hurtful for the patient who feels he/she has been judged by someone who had previously been viewed as a “safe” person in whom to confide. Helpful ideas/suggestions are one thing. Unsolicited advice is another (especially when there seems to be an expectation that the person being “judged” really “should” take the advice).
Here’s the million dollar question… What do you do when a fellow patient appears to be sitting in judgment of you? What do you do when comments (be they subtle or blunt) are made that make you feel uncomfortable? I have had numerous conversations with people who live with chronic illness who have experienced these scenarios. I have found myself in the position of having been judged. What I’m wondering is how many of you have experienced this and how did you handle it? I would love to hear your feedback. Please take a moment to leave a blog comment. I think this is an important topic that affects many people. How can patients living with chronic illness/pain avoid falling into the trap of judging fellow patients? How can patients who feel judged articulate how it makes them feel when other patients judge them (perhaps without even knowingly engaging in judging anyone)?
How can we encourage compassionate support between fellow patients and speak up for ourselves when we are uncomfortable with comments we perceive as judgmental and hurtful (if indeed we determine that it is worth speaking up in a given situation?)
Your feedback on this topic is much appreciated. I believe it is crucial for patients to support each other (whatever personal choices they may make for their own bodies and lives) and avoid passing judgment on each other. Sometimes, there can be a fine line between diplomatically worded suggestions and judgmental/critical remarks that hurt fellow patients. What are some ideas for how to word suggestions so that they are not mistaken as/perceived as “orders”? If one has concerns about another patient’s well-being, what are the best ways to convey that concern without coming across as bossy or condescending?
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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November 7, 2011 11 Comments
Completely Out Of Fuel
Right now, I’m like a car that is out of fuel. I just have no energy.
I am really sick. I look forward to getting back online as soon as possible. I miss talking with all of you and hope you are doing as well as realistically possible. I’m sending healing energy your way.
Hopefully I’ll be able to get back online soon. Right now, I just need to rest. Thank you for your patience. Take care.
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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November 1, 2011 5 Comments
Taking A Break: Not Always A Piece Of Cake!
Taking a break. It sounds easy, right? It sounds like something to look forward to, doesn’t it? Sometimes it is just that. However, I would hazard a guess that many people who live with chronic illness and chronic pain have times where they find it extremely difficult to take a break. Taking a break isn’t always a piece of cake.
Generally speaking, I tend to operate on “the edge” most of the time. What do I mean by “the edge”? Well, I have a tendency to push myself… hard. Sometimes I push myself too hard. This can result in sleep deprivation, loss of perspective on what the healthy limits are (for me with my chronically ill body), and burnout. So, when something unexpected comes up or added stressors enter the picture it can be very difficult for me to deal with everything at once.
The trick for me is in knowing how and when to pull back from activities that must wait (such as writing this blog and replying to messages) during times when I just don’t have enough energy to do everything I want to do. Taking a break from my blog is quite stressful for me. It causes me to become disconnected from the wonderful, supportive online community of people living with chronic illness. It results in me getting behind on replying to emails and Facebook messages from other patients. It also makes me get behind moderating and replying to blog comments. Getting backlogged on all of the above is stressful for me. I don’t like the idea that anyone might think I’m ignoring them. Taking a “break” only to return to a backlog of messages stresses me out.
Here is the thing, though. There are times when taking a break is absolutely needed and warranted. The “break” may not necessarily be to rest. It may be to focus on other activities that need attention. It may not be a “break” in the traditional sense at all. It may simply be a temporary change in routine. A change of focus. The type of break I’m talking about is more the kind where one is not necessarily resting (not that those type of breaks aren’t important too!); it is the type of break where one chooses (or is forced to accept) that one set of activities must be put on hold for a certain period of time. There either aren’t enough hours in the day or there isn’t enough energy in the person to do everything on his/her plate.
What does it take to make you take a break? Do your loved ones need to remind you to take a break? Do you recognize it yourself and take swift action? Does it vary… sometimes you take swift action to get things “into balance” but other times you push yourself too hard and life ends up forcing you to accept your limits? Do you find it difficult to balance everything on your plate? How do you restore balance when things get out of kilter?
I would really love to hear everyone’s ideas on this. Please take a moment to leave a blog comment. You don’t need to have a blog to leave a comment. To leave a blog comment, all you need is your name (screen name is fine) and email address (which no one will see but me). This (finding balance/knowing when to “take a break”) is a topic that affects everyone but it really impacts people living with chronic illness. I would love to hear from people regarding how they cope with finding a balance, prioritizing tasks, managing time, and preventing burnout. Your comments are appreciated.
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
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October 14, 2011 8 Comments















































