Category — General

What happens when you were already tired to start… truly exhausted… and then a crisis situation of some sort (or multiple crises) crops up – resulting in you expending energy you didn’t even know or think you had and leading to a more profound state of exhaustion that makes day-to-day functioning quite challenging?

What do you do if you’re so drained that basic daily functions are quite challenging? What do you do if you’re in so much pain that it’s difficult to think and you’re too exhausted to think straight about how to best deal with that pain (i.e. when some of your normal coping strategies start going out the window because you’re too tired to organize your thoughts)? What do you do if you’re so drained that you can’t keep up basic correspondence (i.e. letting people know that you’re OK)? What if you are experiencing stress that drains you emotionally and adds to the physical exhaustion? While it might seem like common sense for anyone who feels utterly exhausted to “simply” back off on some of their activities to avoid burnout, this can be easier said than done sometimes. There are times this requires tough choices to be made.

Make peace with the fact that you can’t do everything you wish to do when you wish to do it. Give yourself permission to stagger things out. Allow yourself to work through anger and frustration while also moving ahead and accepting that the odds are on your side for things getting better over time. (Crises don’t last forever… even if they seem to when we’re in them)! Accept the fact that you are doing the best you can in your unique situation. (Remember that everyone’s situation is unique. No two people are exactly alike). Whether one has a chronic illness or is perfectly healthy, time management is an issue that impacts everyone. The trick for people living with chronic illness (especially when dealing with some sort of acute crisis or crises) is that time management becomes that much more difficult.

In the end, all any of us can do is our best. We aren’t likely to please all of the people, all of the time. Accepting this fact can be helpful… especially in those extra-busy and/or extra-stressful times. Weeding out one’s “best” from one’s “best if one were healthy which one is not” is key. Your “best” 20 years ago and your “best” now may differ wildly. That’s alright. It is what it is. Above all, it is imperative to prevent burnout. That’s not to say that it’s never a good idea to test the waters and push the boundaries a bit. What I have found is that the key for testing the waters is to closely monitor how symptoms are affected by increased/different activity. Being prepared to back off when symptoms do get exacerbated is very important.

Now, if only I could consistently implement these tips myself… I might feel better! (I’m working on it). As anyone I normally interact with online (including on this blog) can tell you, I have backed off immensely in my online activities. Unfortunately, when I did so it was not to take a break or a vacation. It was to replace that time spent with (crisis-related) activities that were more draining and stressful. So, it will take me some time to resume anything resembling a “normal” schedule… but I intend to work on it. In the meantime, I won’t be able to catch up on messages anytime soon. So, please know that you are in my thoughts even if this is the only place you hear from me for awhile. Thank you for your patience.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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It can be quite difficult for anyone to “get back in the saddle”, so to speak, when the normal routine has been disrupted. I think it’s especially challenging for those living with chronic pain and chronic illness. As those living with chronic conditions know, having routines can be especially helpful for riding out the storms.

While one’s daily routine may be thrown off kilter by things like symptom flare-ups, surgery, and new diagnoses… it can still be very useful to have a routine to act as a framework. Even if that routine has to be tweaked, improved, or temporarily abandoned for brief periods, it can be helpful. By the way, when I talk about getting “back in the saddle” I’m speaking in a figurative sense (as anyone who has read my blog regularly understands).

So, what is one to do when the daily routine has been turned upside down, shaken up, altered? That is a very good question. In my own situation, it is abundantly clear that I may never be able to return to the pace I kept in the past. Even if the offline situation that has disrupted my usual routine were to be magically resolved (no, it’s not resolved), I honestly don’t see how I can return to writing as frequently as I did before. Even if I had the time and energy to resume that kind of schedule (no, I don’t), this has been one of those life experiences that forces a person to re-assess everything.

To be clear, I will most definitely be continuing to write this blog. I also look forward to getting back to some sort of routine with it… even if that’s not the routine it used to be. However, I’m not sure yet how my routine will differ from what it was in the past. My sense is that I’ll likely be writing about nearly all the same topics but just less frequently than before. However, I’m not sure yet how it will play out.

With the offline situation still unresolved and with my energy level far lower than I’d like it to be, I recognize that I need to pace myself and focus on self-care issues (getting enough sleep, eating right, managing my time in healthy ways, etc.)

Thank you to my online friends for your patience and understanding while I sort things out and attempt to begin the journey of getting back to a more normal schedule. There are many unanswered messages from people that I need to address and I don’t know when I will get to them. I just need to take one day at a time. It will be a gradual process but I hope, at some point, to get back to a similar routine to what I had before… just calmer in pace.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Spring is in the air! It’s that time of year (in my part of the world, anyway) where people tend to spend more time outdoors.

Since it’s Endometriosis Awareness Month, I wanted to highlight some new research that I think is worth noting. Today I received an email that referred to a study about sunscreen and endometriosis:

Chemical & Engineering News: Sunscreen Compound Linked To Endometriosis

Here is a link with more information:

Urinary Concentrations of Benzophenone-type UV Filters in US Women and Their Association with Endometriosis

The link above is for the abstract only. I don’t have the ability to access the full article. However, the abstract says:

“exposure to elevated 2,4OH-BP levels may be associated with endometriosis”

Given that this chemical affects estrogenic activity, it’s helpful to know about this new research (and the fact that the researchers speculate that 2,4OH-BP may be associated with endometriosis).

For those who are not aware, endometriosis has been associated with an increased risk for developing melanoma:

Personal history of endometriosis and risk of cutaneous melanoma in a large prospective cohort of French women

If you’re looking for a place to learn about sunscreens, you may want to try this site:

Environmental Working Group’s Skin Deep® Cosmetics Database

To be clear, I’m not here to provide anyone with sunscreen advice. I myself have very fair skin that burns very easily (no matter how carefully I dress or try to avoid mid-day sun) and I’m not really thrilled with the limited options available. (See “Sunscreens Exposed: 9 surprising truths”). It’s interesting to me that Europe apparently has superior options available for sunscreen due to FDA delays in approving ingredients already used there.

Since I have multiple chemical sensitivity, I sometimes have reactions to other people’s sunscreen – especially since the spray sunscreens came onto the market. Some of those sprays make me so sick! Last summer, we were at the beach and someone about 40 feet away from me sprayed it. The wind carried it right over to me and I didn’t need the sunscreen database to tell me that there were some nasty chemicals in it!

Hopefully, this sunscreen guide will help people make informed decisions.

It’s always helpful to be able to make informed purchasing decisions… especially with regard to products that can impact one’s health.

When I’m going to be outside for any length of time in the sun, I try to wear long sleeves if possible. (I’m famous for stealing my husband’s old dress shirts for this purpose). I make sure to wear a hat and sunglasses too. There are definitely times I feel the need to wear sunscreen. For those times, I use the sunscreen database to find a mineral-type product and I avoid sunscreens that have endocrine-disrupting chemicals in them. I seek out shade when at all possible. (This is helpful for dealing with the heat intolerance and syncope issues I struggle with in warmer weather as well).

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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In many ways, my life – as I knew it – got shattered, for lack of a better term, this past January. My days and nights are now filled with managing a very complex crisis that: sucks my energy, causes immense stress, threatens to take me off track with managing my illnesses, results in emotional upset, has all but isolated me from my many wonderful online friends, and far more.

I have had to carefully walk a very fine line (to avoid burnout and significant exacerbation of symptoms). Making time for basics like sleeping and eating has become challenging at times. It’s exhausting and I look forward to a time when things will return to a sense of normalcy… even if it’s the sort of “new normal” that we in chronic illness circles often talk about. (In other words, I don’t think I’ll ever be the same after the events of recent weeks). I do want some peace and real rest. The reality is that I can’t see this on the horizon anytime in the near future. So I have to pace myself accordingly.

Some of the circumstances I’ve learned of and/or been directly working on have been truly heartbreaking. I have really had to draw on everything I have learned over a period of decades. All of the energy I normally channel into this blog (and time normally spent networking with my fellow patients online) has been funneled into working on this offline crisis.

Today begins Endometriosis Awareness Month. If you have been a regular reader of my blog for awhile, you know that March is normally a very busy time for me because of it. I honestly don’t know whether I will be able to blog for Endometriosis Awareness Month this year. That remains to be seen. To be honest, it’s not looking very promising. Time will tell. In the meantime, I just wanted to take a moment to check in here. I miss talking with you all! I wish I knew when I will get back to a more regular schedule for updating this blog. The reality is that I simply don’t know.

Thirty years ago, my endometriosis symptoms began. Twenty years ago this month, I finally got diagnosed with endometriosis via an outpatient surgery called laparoscopy. After living with endometriosis symptoms (undiagnosed) for 10 years, I was finally diagnosed on March 17, 1992. It may sound strange but I was actually relieved when I finally got the diagnosis in 1992… because I finally had a name for what was happening to my body, I had validation that it was a real medical condition (i.e. I wasn’t exaggerating, “being dramatic”, or “being a wimp” as various people had implied or came out and said to me over the years). My illness was real (as I had known all along). The symptoms that had so often made my life a living hell in the preceding 10 years were attributable to a real medical condition. A condition that has treatment options (however inadequate they may be). A condition I now know I share with millions of women and girls the world over. Obviously, I would prefer that endometriosis be banished from the planet and I wish that no one ever again would have to suffer its effects. It was comforting, though, to meet other women (via in-person support groups first and then online) who “get it”.

While I will do everything I possibly can to participate in Endometriosis Awareness Month, I know I won’t have the stamina for it this year that I have in previous years. So, I would like to encourage anyone who is reading this to please check out the many posts I’ve written previously on endometriosis. If you haven’t already signed the above petition, please consider doing so. If you have signed it, please share it… especially on Facebook and Twitter. Anyone who wishes to sign it can do so. We recently topped 1,000 signatures. Let’s keep that momentum going. Let’s get the word about about endometriosis!

It is a serious illness that is often marginalized. Patients deserve to be taken seriously. They deserve to be given factual information rather than misinformation. Doctors who dole out misinformation need to be called out on it. Patients dissatisfied with their treating physicians need to seek second (or 3rd or 4th…) opinions. Not happy with your doctor’s handling of your symptoms? Why not do the research to find the best doctor in your area and switch over? Patients deserve to be treated with respect and dignity. Patients deserve doctors who are honest and ethical.

So, if you aren’t happy with the treatment you’re getting… ask around. Network with other women. Determine who might better suit your needs. Rather than reward unethical or uninformed physicians with your health care dollars (and that includes payments made to doctors by insurance companies… not just your out of pocket costs!), take your business elsewhere if you are not satisfied. We each only get one body in this life. It took me some time in my own case to figure out how to best advocate for myself. In time, however, I learned not to waste my time, energy and well-being being treated by doctors who are not a good match for my needs. Doing your “homework” and advocating for yourself are so important!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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It’s a word that can have many different connotations:

A break can be a pleasant, restful time. It can be a time to re-connect with friends and loved ones, to re-energize, and to heal.

On the other hand, the word “break” can have far lest restful meanings. Confronting a significant challenge can make you feel as if you might “break”. Something upsetting or troubling can “break” your heart. Someone can “break” a promise or fail to meet an obligation or responsibility. Someone can “break” your trust. Bad news can “break”. Someone can do something that possibly even “breaks” the law which puts people in danger.

From the time that I started writing a blog in June 2008, I have never taken an entire month’s “break”… until now. It wasn’t a planned “break”. I don’t know when I will be able to get “back to normal”. I haven’t even felt I had the luxury of writing a quick update before now because I have been focusing my energy on a complex, maddening problem that has made it difficult for me to remember all that I know about the importance of self-care. Finding the time to eat and sleep properly has been difficult. I have had to force myself to do so. Sometimes in life, things crop up that we didn’t count on, want, or predict.

So, I wanted to take just a moment today to say that I haven’t forgotten about this blog. I haven’t abandoned it. Recently, I have just been focusing my energy on other things. How long I will continue to feel the need to do that remains to be seen. I will try to post some sort of brief updates like this when I am able. I’m not sure how often that will be or when things will calm down. I’m not sure when I will truly get to take a break from my “break”. It doesn’t look like I will be able to elaborate much further about what has taken my attention offline. This is for a multitude of reasons. All I can really say is that it may keep taking my attention for some time to come. I wish I could better explain things but I don’t really see how I can.

For those whose blog comments have gotten held up in moderation or to whom I didn’t reply promptly (especially those who are new to this blog and unaware that this is not how I usually do things), I’m sorry for the delay. Please do keep your blog comments coming and I will post them as I am able. I may have to skip individualized replies to them (at least in some cases), depending on the content of them and how I’m doing on time. I apologize for this disruption in how things are normally done but I am all-too-aware that I only have so much energy to spend and just about all of it is going offline at this time.

Last but not least, I wanted to mention that the endometriosis awareness petition is just two signatures shy of 1,000 now! For those of you who are not aware, anyone can sign this petition in support of the millions of women and girls (like me) who have endometriosis. One does not need to be an endometriosis patient to sign it. So, please share the link to it (above) on Facebook and Twitter and let’s see how quickly we can surpass 1,000 signatures in support of endometriosis awareness! Thank you!

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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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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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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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.

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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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).

(Image by Cool Text)

Fragrances: For many patients (especially those who experience migraines or multiple chemical sensitivity), attending gatherings where people may be wearing fragrances that trigger symptoms is a major problem. While it may be difficult, try to educate people about how such fragrances affect you. If may be awkward to discuss this (i.e. people can get very defensive about their fragrances) but the payoff will be well worth it if it means someone avoids wearing fragrance to such a gathering where you will be present.

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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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:

Found oneself in situations resulting in feeling hurt/misunderstood by those who don’t “get it”

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)!

OK. Let’s face it. If you’re reading this chronic illness post, you may never be quite this bouncy!

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).

REST: The importance of sufficient rest cannot be overstated. Unfortunately, some of the same factors that can lead to the need for extra rest (travel, more time than usual involved in challenging activities, stress) can make it difficult to sleep (being away from home, having extra pain from overdoing things that makes it hard to get to sleep ot stay asleep). It isn’t always easy but doing whatever you can to get enough rest is key.

Catnap, anyone?

COPING MECHANISMS: These can vary widely from person to person. For some people, coping mechanisms may actually assist in the process of getting to sleep or staying asleep (to get the rest already mentioned). Coping mechanisms can range from taking more frequent breaks during activities to talking with a friend or loved one who “gets it” to one of my personal favorites… listening to music.

Tori Amos’ music is often one of my first choices.

LIGHTENING THE LOAD: When attempting to bounce back after having been extra active, it can be helpful to cut back to the absolute minimum amount of activities for awhile. Rather than trying to “get back to normal” (whatever that is!) , it can be helpful to do less than usual while recovering from a period of increased activity. The body gets a chance to “catch up”.

Try not to get loaded down with more than your body can handle.

DON’T BE TOO HARD ON YOURSELF: Many people I know of (who live with chronic illnesses and chronic pain) go through periods where they “beat themselves up” about what they can’t do in general (or what they couldn’t do when faced with activities that are not within their capabilities at this time). Self-induced guilt trips only complicate matters. If you find yourself focusing on what you can no longer do, try to shift your thoughts to what you can do. Rather than focus on the losses, try to focus your limited energy on appreciating the things that you can do.

HUMOR: Never underestimate the power of humor. Whoever said “laughter is the best medicine” was right. When I am feeling drained, depleted, and exhausted, one thing that can sometimes perk me up is watching a really good comedy or listening to my husband crack jokes (which sometimes include gallows humor).

Humor has helped get me through some very TRYING times!

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.

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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