Category — General

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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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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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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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.

If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support!

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