Category — Chronic Pain & Chronic Illness

Sometimes with chronic illness and chronic pain, we have to rest whether we like it or not. While it’s frustrating not to be able to do the things we’d like to do, it’s important to listen to our bodies and heed the warnings. So, while I have so many ideas spilling out of my head I don’t know what to do with them, I need to rest right now.

That means I need to stay offline until things stabilize. Besides, with all of the calls I need to make to health “insurance” and dental “insurance” companies, there’s not much time left to be online. (For those of you who aren’t connected with my Facebook account, I had a failed root canal for which I’ve seen two endodontists). The tooth cannot be saved.

It needs to be extracted. I have a history of incidents where anesthesia failed (including two previous tooth extractions). So, a simple extraction is becoming quite complex and the cost involved is frightening. I’m not sure how long I’ll need to curtail my “online time”. Right now, I’m waiting for a migraine to clear and it has caused my blood pressure to spike. I will be back online as soon as I can. 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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Today is World Suicide Prevention Day. As regular readers of my blog are aware, I have written about the topic of suicide on numerous occasions. I believe it’s extremely important to get people talking openly about this important topic.

Let me explain why I initially began writing about suicide. I closely monitor the traffic that reaches my blog. Awhile back, I felt compelled to write about suicide because of the frequency with which people were reaching my blog after using search strings such as endometriosis and suicide. That is just one example of a search string that got my attention and made me feel it would be advisable to write about suicide prevention.

Subsequently, I took a safeTALK suicide alertness class. I referenced it previously in this post.

Below are some links to previous posts I have written on this topic:

According to the American Foundation for Suicide Prevention:

“Research has shown that 90 percent of people who die by suicide have a diagnosable psychiatric disorder at the time of their death, most often unrecognized or untreated depression”.

Recently, I read about a study that found one in 10 suicides to be linked to chronic illness.

That article led me to a study by Demos. The authors of the study (Louise Bazalgette, William Bradley, and Jenny Ousbey) investigated “the truth about suicide and serious physical illness” and found “that at least 10 per cent of the suicides that take place in the UK are by people who are chronically or terminally ill”. They also found that there is a “wide variation in how verdicts of suicide are recorded by coroners and made available to the public and policymakers”.

From Demos:

“Despite some progress made in our cultural attitudes to death, suicide remains very much a taboo subject. This discomfort has serious consequences, as it may be preventing proper analysis of the root causes of suicide. While some of the risk factors for suicide – such as gender and mental illness – are well-known, there is a vast hinterland of research waiting to be done on other potential factors. Physical illness [emphasis mine] is one such factor…”

To read the entire study, click here to read The Truth About Suicide (by Louise Bazalgette, William Bradley, and Jenny Ousbey).

Needless to say this study got my attention. Having spent a fair amount of time reading through materials about suicide, this study was the very first one that I have encountered that looked specifically at the link between chronic illness and suicide.

From the Guardian article that led me to the Demos study:

“A Department of Health spokesman said its mental health strategy recognised ‘that physical illness increases the risk of mental health problems and vice versa’. We are consulting with bereaved families and experts in general practice, local government, and other organisations on a new strategy to prevent suicides.

The consultation calls upon healthcare professionals to be alert to mental health issues, especially depression, in the patients that they see for known physical health problems, and to take the right steps to help people with long-term conditions have a better quality of life”.

It is great that such research is being done and I think it was long overdue. More is definitely needed. It is also apparent that the potential overlap between mental and physical illnesses in the same patients isn’t being overlooked by these individuals. It’s important for people to understand that many patients cope with both physical and mental health conditions.

Another study, conducted by Temple University, looked at whether suicide might be under-reported for political reasons:

Without a doubt, the stigma associated with suicide and the reluctance some people have to discuss it are barriers to preventing suicide. It is imperative for those who are at risk to be identified and referred to suicide first aid resources.

Moving on to what another blogger is saying to get the conversation started about suicide, I’d like to refer readers to another post for suicide prevention week.

Trigger warning: Since many of my readers struggle with or have experienced infertility and/or pregnancy loss, I just wanted to take a moment now to make clear that Shaping Youth is a ‘forum about media and marketing’s influence on kids’. If you’re more comfortable skipping past this section, please be sure to see the resources listed at the end of this post.

Some of you may be familiar with Amy’s 2009 post Diagnosis Endometriosis: What to Know As Preteens Grow. As I mentioned earlier, my blog receives many visitors who search on phrases such as “endometriosis and suicide”.

Yesterday, Amy shared my 2010 About Suicide Prevention post within her information-packed post Talk To Me: Because Media Matters For Youth Outreach. I am very pleased that Amy is shining a spotlight on the topic of suicide and I encourage my readers to check out Amy’s post. I think it is important to “start the conversation”, as the campaign Amy referred to suggests.

The more open people are about discussing suicide, the more likely the people who need help locating appropriate resources are to discuss their situations. Most people who have thoughts of suicide DO send out “invitations” that ask for help. Again, let’s start the conversation.

Regardless of the factors that contribute to a person having thoughts of suicide, it’s crucial to for people having suicidal thoughts to get connected with suicide first aid resources.

If you, or someone you know, is having thoughts of suicide please call a hotline (resources are listed below).

Suicide first aid resources:

In the United States, please call call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255).

Outside the United States, please see this website for the International Association for Suicide Prevention (IASP) . It will direct you to the hotline nearest you:

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

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Looks can be deceiving. As any person living with chronic illness(es) knows, one can look perfectly healthy and simultaneously be anything but that. A healthy appearance on the outside can be illusory.

People’s perceptions of those living with chronic pain and/or chronic illness(es) can be very detached from the daily reality. The sick person may be open, guarded, or somewhere in between about their medical condition(s) for a variety of personal reasons. For example, a person’s decision to disguise how sick he/she is can be necessary for career preservation in many professions – for those who are able to stay in the workforce at all. Many employers can and do discriminate against people based on their medical conditions. (They may blatantly disregard anti-discrimination laws designed to prevent this from happening).

Some patients may elect not to disclose information for fear of being lectured by well-meaning people who may have suggestions for the patient to “cure” his/her (incurable) illnesses. Seldom do those around the patient know of options the patient hasn’t already investigated or tried. Their intentions may be good but the patient may be tired of hearing about false cures and may seek to avoid hearing about them again. Some “treatment options” may be scams designed to exploit patients and make money off of them. Nearly every person I have ever met who lives with chronic illness(es) and/or chronic pain has invested large amounts of time and energy (not to mention money) searching for the best way to manage the symptoms and improve quality of life.

One may hear about or witness a chronically ill person’s activities on a “better day” – without witnessing things in context – and get a misconception. (“Better day” can be, in itself, a misleading term when discussing people who have chronic conditions). If one does not witness the – sometimes very elaborate – planning that went into that person being able to function beyond his/her “normal state” or if the “crash”/recovery stage that follows the atypical activity isn’t witnessed firsthand, it’s far too easy for the outside observer to draw conclusions like, “she must be feeling better” (with the operative word better, in this case, sounding an awful lot like “all better”… as opposed to “somewhat improved for current symptoms”).

As any person living with chronic pain and/or chronic illness(es) can attest to, looks can be deceiving in the aspect that people only see/hear what is presented to them and what they are open to hearing or understanding. Things are seldom black and white. They are often not as obvious as they appear at first glance. The picket fence above is black against a white back ground, right? Or is it a white fence against a black background? What one sees at first glance may not be as definitive as it first seemed.

This has been an incredibly busy, unusually active summer for me. The trip alone (written about in three posts you can access via this link) was a massive undertaking. I am still working at recovering from the trip and we got back from it over 6 weeks ago. I still have exacerbated symptoms and fatigue related to the trip. As I’ve written before, I was happy to have the opportunity to travel and to have found a means for traveling overnight that worked for this trip at this time. I am fully aware that I could try the same exact trip some other time and it could be a disaster. I know from living with chronic illness/pain for 29 years now that there were many things that could have gone wrong on this trip that didn’t. In other words, we were fortunate. I also know that a huge factor that enabled us to pull off the trip was that we had lots of built-in flexibility. My husband was fully aware that I might not be able to tolerate any number of potential chemical exposures. It was very important to me to know that early exit was always an option if it became necessary. We knew the risks, planned as carefully as possible to try to avoid risks, and then we rolled the dice.

As grateful as I am that things worked out for the most part (the arguments with my husband over the aspects of the trip that didn’t always work out were not my idea of fun… nor his), I fully recognize that things could have been much more problematic. For example, had the campsite neighbors who were burning who-knows-what (see previous trip posts for details) continued to do so, we would have had to pack up and go home. While I was able to tolerate camping for this summer’s trip (in a way in which I am no longer safely able to stay in a hotel, motel, or Bed and Breakfast)… that doesn’t in any way guarantee that future camping trips are automatically safe. Not by any stretch of the imagination.

The lack of visible signs that a person is ill can be deceptive. There are many medical conditions, including ones that cause debilitating symptoms, that do not cause the person to look sick. There are medical conditions that are categorized as legally disabling that do not result in any visible signs. This does not make them any less debilitating or disabling.

Living with invisible illnesses (also known as hidden illnesses) is physically (and sometimes emotionally) challenging. For me, having to educate people about about misconceptions (i.e. finding the best way to let those around me know that one relatively successful camping trip does not translate to “any challenges I had regarding traveling are now gone”) is difficult. It’s important for friends and loved ones to understand that the same barriers and challenges that were present before still exist (and that just because I managed to “get through” the scheduled time of five days for the trip this summer doesn’t mean that it wasn’t very challenging).

I thought I’d close with the following article link that I found while searching for information on invisible illness and hidden illness. The article talks about a former United States President but I don’t make the reference to veer into politics in any way. I am including the article because I think it demonstrates the fact that even someone who was widely regarded at the time as healthy was secretly dealing with chronic pain. While I like to think times have changed for the better since then in the aspect that people are more open discussing health conditions, I am also abundantly aware that for an elected office (such as the Presidency) it is still taboo to discuss serious health problems with the public. I’m not convinced that it would be any easier today for the chronic conditions mentioned in the article to be disclosed by someone serving in such a position.

Finally, here is a quote from the article that I think many people living with chronic pain will relate to…

“Life is unfair. Some people are sick and others are well.”
~~ President John F. Kennedy

That about sums it up. I’m sending healing thoughts out to you all.

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

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I have written previously about a camping trip we recently took (see here and here). While I had concerns for how my body would handle such a trip (particularly how I would fare regarding fibromyalgia pain), I decided to go and hoped that my body would tolerate a trip of this nature and length. Since my interstitial cystitis can make it challenging to ride in a car for long stretches, I was sure to do a bladder instillation shortly before we left the house. This was very helpful in reducing the number of times we need to stop to find a rest room.

While we chose camping over a hotel/motel (or a Bed & Breakfast) due to previous severely negative experiences with multiple chemical sensitivity (MCS) reactions, I was certainly aware that camping could present its own MCS challenges. Camping is most definitely not for all MCS patients. However, I felt that I was in a position to give it a try with the hope that I would not have any nasty reactions. We knew going in that I might have to bail out if anything were to make this necessary.

We decided we were willing to take the risks involved with this trip. Granted, this was a bit scary for me and I had to have faith that my husband would assist me in bailing out if that were to become necessary. Obviously, I would not have been happy if we had to cut our trip short due to my illnesses but it was important to know that bailing out would be an option. Had we done so, we would only have been out a couple of nights worth of campground fees (which wasn’t very much). We wouldn’t have been out the sort of money involved in cutting a hotel stay short. So, the stress of changing our plans and the fact that we would have lost the time we invested would have been the major losses if I had found myself unable to complete what we’d planned.

By the way, did I mention that we discovered on the first day that we had to turn roaming off on our cell phones because we were so close to Canada? Yes, it could have gotten very expensive if we had not turned off the roaming. It was very cool to put the canoe in (not far from our tent) and reach Canadian waters in no time, though. We also enjoyed our visit to the 1000 Islands Skydeck (mentioned in a previous post and located in Canada). We hadn’t been to Canada in quite awhile so this was the first time we needed to show enhanced drivers licenses (a less expensive alternative to passports). Having grown up never having to show anything to get into Canada or back into the United States, it felt odd having to produce enhanced drivers licenses and have them scanned. It was the most thorough border crossing I’ve ever experienced.

We purchased the tent about 4-5 months in advance so that we could air it out before the trip. It can be difficult to predict what I might react to and we needed to be sure we had ventilated it well enough before traveling so that I wouldn’t have an MCS reaction to it. Thankfully, the tent had no smell (that I could notice, anyway) when we first opened the box.

This was a pleasant surprise compared to what I was expecting. The tent worked very well throughout the trip. We were very careful getting in and out of the tent (trying not to let any bugs inside). Would you believe that we didn’t have a single bug in the tent in the 5 days we used it? It was well ventilated with plenty of windows. I was very pleased with it.

In addition to all of the normal things one does to plan for a trip, we had to evaluate whether the transportation we had could safely handle such a trip. My van (pictured above) was in and out of the auto shop a couple of times right before the trip.

The pesky light above kept appearing on my dashboard. Needless to say, we needed to get to the bottom of why this light kept appearing since we didn’t want to be stranded somewhere far away from home with a broken-down car. Taking my husband’s car for the trip was out of the question for several reasons. For one, his car is too small and we wouldn’t have had enough space for what we were taking with us. For another, his car has slightly more miles than mine does (which is saying a lot considering the mileage on my van).

Finally, the seats in his car are far less comfortable than the ones in mine. So, from a fibromyalgia standpoint, taking his car for a trip like that was out of the question. Having been reassured by our trusted mechanic that the cause for the engine light was not something that was a safety issue (and was a repair he even said could wait to be fixed), we decided that the van was safe to drive. As I touched on previously, my husband was the primary packer. He organized our belongings well and got them to fit nicely inside of the van. We had reserved our campsite online.

It goes without saying that the first criteria I had for choosing a campsite was proximity to the rest rooms. Our site ended up being about 500 feet from them. This distance to the rest room was workable for me… even if I accidentally wandered slightly off track on the way back to the tent in the middle of the night. (Note to self: don’t forget to wear your glasses when traipsing through the campground to the rest room in the middle of the night with it very dark). We were very fortunate in that we had no one next to us on one side for the entire time and we only had people next to us the first night on the other side.

This can’t be explained simply by the fact that we camped Monday through Friday (though I’m sure bypassing the weekend helped) because there were many, many areas of the state park that were packed like sardines. I am very grateful that we had no neighbors on either side for nearly the entire trip and that we were near a rest room. We could even see the lake from our campsite!

Before the trip was over, I had not-so-lovely visits from both endometriosis and migraine pain. Having lived with endometriosis since I was 13 years old, I have become accustomed to it acting up anytime I travel. So I wasn’t surprised. (It’s not something I can plan around either. That’s not how my body is wired). As for the migraine pain, I was thankful that it was short-lived. Neither “took over” the trip.

What was the biggest challenge/risk that surfaced during the trip? That would have to be when one of our neighbors burned something very nasty in the campground (seemingly from the row of campsites right behind ours). This campfire most definitely did not contain just wood burning in it (and I’m fully aware that some MCS patients wouldn’t be able to tolerate any campfire at all). To me, it smelled like burning plastic. That’s right. Burning. Plastic. The smell was so strong that I couldn’t imagine how it would dissipate anytime soon. We were just heading out for the day when this happened. I was afraid to leave our tent in that air but knew that taking the tent down would mean that we were going home. (There is no way my husband would go through the hassle of taking the tent down unless we were leaving).

At this point, my husband (who isn’t always fond of what he tends to consider “making a scene” in regard to me having an MCS reaction)… made me incredibly proud. He stopped in at the registration desk and told them about the problem with someone burning far more than firewood. It was so incredibly hot that day that I stayed in the van with the air conditioning running when he went in. So, I don’t know precisely what he said or how he said it. All I know is that I was scared to return to our tent because if whatever was generating that smell didn’t get terminated very quickly, I knew we’d have to pack up and go home halfway through our trip. When we returned to our campsite later, there was NO smell. None. The park rangers must have taken very swift action because there wasn’t a trace of the smell when we got back. I was so happy that my husband spoke up and that the park’s staff was so responsive. Go New York State park rangers!

Also, I was pleasantly stunned to discover that the state park uses no toxic “air fresheners” in the campground rest rooms! (See this link for more information about Anne C. Steinemann, Ph.D., who has done research on “air fresheners” and other toxic products). I even had a brief chat with a manager up at the registration desk and it turns out they clean their lodges with green cleaning products. I didn’t enter any lodges and don’t know what products they use – but I was pleased to see them making an effort to select healthier products and to avoid unnecessarily exposing people to toxic chemicals. I was impressed!

One brutally hot (100+ Fahrenheit) day, we had gone into one of the towns (Clayton, NY) in the 1000 islands to eat and I spotted an adorable shop across the road from where we had parked. I was incredibly hot and I suggested we check out this shop not only because it looked cute but because I knew it would be air conditioned. (At that point, I was too impatient for cool air to even wait for the van’s air conditioning to kick in). So, we went and checked out the shop. It was like an oasis! Walking into the shop, we were immediately greeted by a very welcome wall of cold air. Inside, there were many beautiful items of clothing, hats, etc.

Every winter, I’m always searching around the house for a good hat. With my short hair, my ears get cold. This shop had a snuggly, warm hat that will be great this winter. I know, I know… Who buys a winter hat on a 100+ degree day, right? Well, it was so nice and cool in the store that I wasn’t deterred from planning ahead for winter. We had a very nice chat with the store owner. As it turns out, the store is quite new. So new, in fact, that the website for it is not yet active.

However, I am linking to it anyway. I figure that way once the site is up and running anyone who reads this and goes on to travel in the 1000 islands may consider looking paca up. The name of the shop refers to the alpaca fibers that are used to make many of the items in the shop (including my hat). For those who may never travel to the 1000 islands, once that site is up and running it will give people a chance to shop online.

“In recent years, interest in alpaca fiber clothing has surged, perhaps partly because alpaca ranching has a reasonably low impact on the environment”.

The owner of the shop was extremely friendly. She wrapped my purchase up in pretty turquoise tissue paper (sealed with the paca logo) and placed it in a white bag. She was the kind of person with whom you could just have a good, long chat. I’m not normally very chatty when I am shopping. So, it’s a bit unusual for me to be quite so chatty in anyplace that sells things. (Generally, I like to be in and out to dodge sales pitches and such). This shopkeeper, though, was totally non-pushy and let us browse around without making us feel pressured, rushed, or hovered over in any way.

Everything in the store was truly pretty and I felt like I was leaving the store with a special memento of our trip… in part because she took the time to wrap the package up and make it look so pretty. The whole shop was just gorgeous. I look forward to this shop going online because there were some very nice, reasonably priced items that would make nice gifts. Since I don’t step foot in malls due to my MCS, it’s always nice to discover new online shops. This shop really stood out and had some gorgeous merchandise. I told the owner when we were there that I might mention her shop online. Above is her business card. After discussing it with the owner, I decided not to display the phone number listed on her card (since she is still in the process of getting the shop set up… and unsure she wants that to be the number displayed on the Internet for her shop). So, I blocked out the phone number but the rest of the information you need to find her shop is there.

Quite possibly the best, freshest fudge I have ever had was here: Lil’ River Fudge Co. If you’re ever in the area, I cannot over-emphasize how delicious this fudge was. They had locations in both Alexandria Bay, NY and Clayton, NY.

Well, I think it’s time for me to wrap up this 3 part series on traveling while chronically ill. Obviously, what works for one patient may not work for another. Let me try to wrap all of the loose ends up with a bow, so to speak.

The trip presented its challenges and not-so-relaxing moments. (That’s code for my husband and I found ourselves arguing a few times and that wasn’t fun). The way I look at it, the stakes were high for this trip. We invested money, time, and effort into making this trip happen. I risked increased pain and MCS reactions by trying such travel. When the stakes are high (and when pain levels are higher than they would be at home… in my case) and the temperatures outdoors are high, tempers will often flare. Was the trip perfect? No. Would I do a trip like it again? Yes. Will I be doing so anytime soon? No. It will be some time before we recover financially from this adventure and it will be some time for my body to recover as well.

All in all, though, I’m glad we took some chances and tried something we hadn’t done before. Now we know that, with some planning and effort, it IS possible for me to travel despite not being able to stay in hotels, motels, and/or Bed & Breakfast establishments. That knowledge is freeing for me. Now, all I have to do is recover from the trip. Thanks to a decent air mattress, the fibromyalgia pain wasn’t too out of control while we were camping. It was worse than at home (especially with the stairs at the castle and the walking around we did in town). However, I’ve had worse.

Enjoy what you can and focus on it and what you can do. Try not to get fixated on what you can’t do.

I am acutely aware that some of my readers are housebound and that these last 3 posts on travel are not helpful in the aspect that one who is housebound can’t take the sort of chances I did with this trip. My hope is that maybe seeing the pictures (especially from the post about the castle) might still be worth a read for those unable to travel. Obviously different people are at different levels as far as what they are able to do and I don’t mean to suggest in any of these posts that anyone should take unsafe risks. The risks I took with this trip were ones I felt comfortable taking but I know that there are people who wouldn’t be able to take the same risks. Everyone is in a unique living situation. What works for one person may not work at all for another. Hopefully, these posts may provide some helpful tips, ideas, and even hope for those who are able to do limited travel. For those who are not in that position, my hope is that by sharing photos from my trip (along with a narrative on what it was like to prepare and carry out this travel) that you might get some enjoyment out of learning a bit about an area you may never have visited. For those of you who stuck with me through all 3 posts about my camping trip (from the bird’s “gift” to the lovely shop we discovered), thank you for your patience.

We packed a great deal into a week and I really haven’t even scratched the surface but I tried to do the best overview I could. If you are chronically ill and wish to travel but are afraid to do so because of limitations imposed by your illness(es), it’s possible that travel is not a good idea for you at this time or it’s possible that you may be able to do so with sufficient planning and and a dose of courage. I wasn’t at all sure I’d make it through this trip but I did it and I’m glad I did. Everyone is different, though, and each person needs to evaluate his/her own situation to determine whether it is wise to travel. I just thought I’d share my experience in case it gives anyone ideas. I really think it’s important to stay safe and evaluate one’s own situation to ascertain whether traveling is advisable.

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

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It isn’t very often that I travel; it is challenging to do so because of the various chronic medical conditions I have. So, the camping trip we took in July took some joint effort with my husband (regarding both planning and implementation), significant support from him in the form of performing some of the physical tasks needed to make this trip happen and a leap of faith on my part. As I mentioned in the previous post, it is going to take me some time to recover from traveling. In this post, I am going to take a break from talking about the details of how I prepared for the trip (and such) to just share a few photos.

I had been to the 1000 Islands once previous to this trip. I was a child at the time and I had seen Boldt Castle prior to its restoration. While the figure quoted online for restoration that has been completed on the castle is $29 million, we learned from talking to the staff at the castle that a more up-to-date figure for the ongoing restoration is $40 million. Having seen the castle as a child at a time when it was run-down and full of graffiti, I was amazed when I saw the website for Boldt Castle prior to our trip. As the trip was approaching, I was looking forward to seeing the castle in person since it looked so different than what I remembered. I was not disappointed by what we saw on our trip. It was absolutely gorgeous inside and out.

The difference between what the castle looked like when I saw it as a child and what it looks like now was a night and day contrast. It really was impressive to see what they have been able to to the interior and to the grounds. I knew going in that there would be many stairs and that touring the castle would be challenging for me. (By the way, there is an elevator). I have to say, though, that any fatigue and pain I experienced while touring the castle was well worth it. It is just a beautiful building. Heck, someone at the castle even had the good sense to have Enya playing the the background. In my opinion, that music set the perfect, soothing tone for people to take in this interesting building.

It was a very hot day when we toured the castle. I overcame some anxiety stemming from the last time I was on a boat and we set off to take the short (5-10 minute), fume-free boat ride to the heart-shaped island where the castle is located. The cool, comfortable interior of the castle was refreshing after being in the hot sun. I will finish up this post with some photos from the castle…

Click here for a virtual tour of the castle. Everyone at the castle was very friendly and informative. If you’re ever looking for a place to visit, I highly recommend the castle and surrounding region. With the many tourists visiting the castle, there was not a single time that day where I smelled any fragrances on anyone. We were amazingly fortunate to visit such a busy place without me having and multiple chemical sensitivity reactions. (Other illnesses were talking to me but I tried to temporarily ignore their voices… knowing that I would pay a price later and accepting that likelihood). I was just very thankful that I didn’t react to any toxic fragrances in that crowded castle. (Crowds can be dangerous for me and it was bustling with tourists).

Check out the website for a winter photograph of the castle surrounded by snowy trees. It’s very pretty!

Having seen the final Harry Potter movie, which was awesome, right before the trip somehow seemed to make walking through the castle even more fun.

There were definitely very challenging moments of the trip but I am grateful that my chronic illnesses didn’t stop me from trying something new. The trip was far from perfect but I’m thankful to have made it through the entire five days, as scheduled. Doing so was a major milestone for me… especially with the oppressive heat. When I get the energy, I will be writing more about our camping adventure.

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

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My mother’s comment when we had returned safely from our camping trip was, “how did you do it”?! What a loaded question! (She knows that I have never done an adventure like this before and that tent camping itself poses all sorts of challenges for me health-wise). I will write more about all that in future posts. For now, let me just say that I was grateful for the opportunity to travel (something I do rarely) and I was also grateful to return home afterwards. We got some lovely photos that I’ll be sharing in future posts. Before I talk about the camping trip any more, let me digress just a bit for some ‘blog housekeeping’…

The month that I blogged the least ever (since I began writing online in June 2008) was last month. A quick peek at my archives shows just how much less frequently I have been writing lately. I realize some people may even be wondering if I have burned out or abandoned my blog since I have updated it so infrequently lately. I haven’t abandoned it. I have come closer than I would like to regarding burning out in recent months. Posts like this and this might have given that away to some of you. It will take me some time to get back on track but I’m working on it. At the same time, I am listening to my body. In the aftermath of the (sometimes wild) trip I’m beginning to write about today, I need to get enough rest. Thank you for your patience. A few of you have sent me messages asking if I’m alright. I appreciate your concern.

Anyway, back to the tent photo. For those of you who are campers, that may look like paradise. For those of you who are not campers, that tent may not look like where you’d choose to stay for a week in the extreme heat of July! (One day reached 102 degrees Fahrenheit – or 38.89 Celsius). With my heat intolerance (discussed previously here), the weather was a major issue for me. I’m not complaining. I signed up for a July trip. I was prepared to give it my all and hope for the best.

I had hoped to write about the trip to the 1000 Islands this past week but my body is still working hard to recover from traveling. This was in many ways the most ambitious travel, by far, that I have done in a great many years. So, it will take me some time to catch my breath (and multiple posts to talk about what it was like to travel the way we did when my health is so poor).

We knew going in it wouldn’t be easy. We also knew that tent camping was the only way we could do overnight travel because of my multiple chemical sensitivity (MCS). Besides, we couldn’t have afforded a hotel or motel anyway. (Another perk of camping: campsites are very reasonable). Food and gas were our main expenses for the trip. There were no worries about expensive lodging costs with camping being so affordable.

The last time we did a trip overnight, we tried staying at a Bed and Breakfast. Unfortunately, despite the pre-screening I did of the B & B over the phone, it became readily apparent that it was as dangerous for me as any hotel or motel would have been. (It was really a disaster). That B & B trip was our final attempt to travel overnight in such a manner. Last summer we abandoned the idea of overnight travel. (Having been burned the summer before by that B & B experience, we elected last summer to do an extremely ambitious day trip). On that trip, we fit far, far too much driving into one day. (That really should have been an overnight trip rather than a day trip). While the end result worked out in that case, we really pushed our luck and it could just have easily turned out much differently. It was way more driving in one day than it makes logical sense to do. That trip we got lucky. I’m not sure I’d ever do that much traveling in one day again, though.

Tent camping emerged as a way we might travel overnight more safely than by staying in chemical-laden hotels/motels and more safely than by packing way too much driving into one day’s time. We knew it wouldn’t be risk-free but we felt we had to give it a chance if we ever want to be able to do overnight travel. I certainly knew there might be MCS problems camping as well. The only way for me to find out whether tent camping is something that is safe for me to try (fully understanding that whether I have a reaction depends on who my campground neighbors are and what they are doing) was to just do it. (I should note that I am fully aware that this option would be totally out of the question for patients with more severe MCS, some of whom are home-bound because of the illness).

My husband packed our hammock into the van when I wasn’t looking. (Without my husband’s amazing hard work packing and physically preparing for the trip, it never would have happened). It worked out great one day when I had really had enough canoe time but he hadn’t. We got out of the water, he set up the hammock, and I rested while he went back out in the canoe. In this way, I was able to rest when I needed to and he wasn’t constrained to only canoeing when I felt up to it. The hammock was a nice surprise. I had no idea he had found a way to fit it in the very crowded van full of an air mattress, sleeping bags, a tent, bicycles, clothes, etc. We even had a cherry (oops – I mean a canoe) packed on top of the van for good measure. My husband really did an awesome job packing everything. We didn’t leave a single thing we needed behind. That’s not bad for a week-long trip! I was very grateful for his efforts. (Note to self: the downside of not paying attention during the packing process is not knowing where anything is without searching or asking – for the whole trip)! Anyway, there is much to tell about our week-long trip. Some of it was fun. Some of it was incredibly difficult. Some of it fell somewhere in between.

I will close this particular post with a tidbit about something that happened on our very first day at the campsite. It is one of those stories that will most likely read funnier than it felt when it happened. It’s OK if you laugh when you read this. I’ll understand. You see… on our first day at the campsite, a bird decided that my head would be the ideal place to deposit a little “gift”. I felt something land on my head and I then bent forward slightly and asked my husband to check my head. Sure enough, he discovered the thoughtful “gift” that had been deposited right on top of my head and remarked, “only you, Jeanne” (in disbelief that of all the places this bird could have left the “gift”, my head would end up being it). Apparently, he thinks I have rotten luck.

He had seen blackbirds nesting nearby and believes it was a blackbird who presented me with this lovely “welcome to your campsite” gift. So, it was off to the the campground shower for me. Sigh. I wasn’t too thrilled at this inauspicious beginning to the trip. However, once I had showered and was ready to start the day (again), I chuckled to myself recalling that a few days before the trip I had read on a Facebook friend’s wall about her having had a similar experience. Her Facebook friends inundated her with comments about it being “good luck”. I’m not a superstitious person but I decided to Google it today, for fun, and see what would come up. I found remarks from the expected combination of people who swear it’s a good luck omen with people or who swear it’s a myth.

In any event, our trip was off to a very, um, memorable start one way or another. I tried to keep a sense of humor about it. Actually, I saw absolutely no humor whatsoever when it happened but post-shower and with clean hair again, I was able to laugh about it. (Did I mention that many years ago, another bird left me a gift as I was walking down the street and the name of the street was Bird Street? I kid you not). The fact that this was my second “gift” received over the years resulted in all sorts of hilarity with us joking around and trying to predict when the ‘third turd’ would make an appearance. Thankfully, this was a ‘one-bird-gift-only’ trip.

There were multiple osprey nests in the area. My husband kept cheering me up by saying, “just be glad it wasn’t an osprey that got you”. The ospreys were beautiful and interesting to watch. I was also grateful that it wasn’t an osprey that left me a “gift”. Those birds are huge!

When time and energy permit it, I’ll be writing more about the trip. So, if you’d like to learn more about how I slept in a tent for a whole week… stay tuned for upcoming posts. (Anyone who knows me in real life expresses shock when they hear that I spent a week in a tent in the heat of July). There were plenty of barriers to be accommodated on this trip and it was most definitely not easy. However, we made it through the scheduled time for our trip and we even managed to fit in some fun and some beautiful sights. Given the extraordinarily hot weather and my various illnesses acting up throughout the trip, I see this as an accomplishment worth celebrating. We could have bailed early but we decided to hang in there and I’m glad we did… even if I will be in “payback mode” with symptom exacerbation for weeks to come. Stay tuned for more about our camping adventure in future posts – a trip which truly did have a carnival-type atmosphere (and not always in the fun sense) at times. Let’s just say we were never bored!

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

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I know that the preceding post was pretty dreary. When the sun finally made an appearance this weekend, it was wonderful!

We even managed to get in a short bike ride on Sunday. This was nice since the incessant rain has meant I’ve gotten very little use out of my new bike. I need to build up the distance I ride very gradually because my muscles aren’t always thrilled during bike rides. So, I’m taking it slow. This whole biking adventure is a big deal for me because my ability to exercise without triggering pain (mainly fibromyalgia pain) has been a major issue for many years now.

I also have to be mindful of pesticides. With my multiple chemical sensitivity, it is important that I ride in areas that have not been sprayed. This can be a challenge at this time of year where I live.

I can’t ever remember having so many rainy days consecutively like that. My muscle pain has been extreme. Anyway, when I set out to write something yesterday, I was aiming for something a bit more cheerful than my last post. I didn’t get very far writing yesterday before being interrupted. However, I did find an audio clip of a song that has been stuck in my head for days. With no disrespect to The Beatles, I don’t ordinarily have their songs stuck in my head. However, this song kept popping into my head during all of those back to back rainy days:

In any event, after about 24 rain-free hours, we had lots of rain again last night. There was even hail predicted but I didn’t see or hear any. Today, the sun is back out. My poor muscles are confused by all of the changes in the weather. However, I’m very grateful to be migraine-free right now.

While I have no shortage of ideas for topics to write about, I have been having difficulty with fatigue. It is frustrating to be bursting with ideas that I can’t get down as quickly as I’d like. It is what it is, though.

So, I will close with two photos that I took in our garden on one of the only days this month that it was not raining. Hopefully you all are practicing gentle self-care, advocating for yourselves, seeking out the support you need for coping with your illnesses, and maybe even enjoying some fresh air if it ever stops raining where you are.

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

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Lately, every single day looks very much like this…

This weather is triggering fibromyalgia pain and it is also draining me with fatigue. At some point, when every single day doesn’t look like this, I hope to be writing more frequently. For now, it’s difficult to be very productive. My muscles just ache.

Apparently, when I recently bought some sunglasses to cope with the hypersensitivity to sunlight that I have been having with my migraines, it triggered the universe to make it rain every day. All I know is that I got to wear those sunglasses a grand total of once (the day I got them). I believe that was about 8 days ago, if memory serves. They’ve literally been in the case ever since then.

Hopefully the weather is nicer wherever you are. I’m looking forward to a sunny day riding my bike with my sunglasses on. Hopefully that day will arrive sooner rather than later.

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

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While I had many ideas for what I was going to write about today, several circumstances that were out of my control (including losing Internet access at my house and currently linking a smart-phone to my computer in order to finish this post) prevented me from spending the time I was hoping on today’s post. Therefore, this year’s May 12th post will be a short one. It is no less heartfelt. Hopefully a short post is better than none at all for the purpose of raising awareness about several chronic conditions that are recognized either in the month of May and/or on May 12th itself. I hope that you’ll check out the links below for more information on these conditions:

Last but not least, I haven’t had the opportunity to see the film Under Our Skin, about Lyme Disease, but the trailers look compelling. According to the film’s website, it is currently airing on PBS stations. See the listings on the site for dates and times: here.

May is Lyme Disease Awareness Month. For information about a Lyme Disease protest on May 21, 2011 in Washington D.C., click:

Please help spread awareness about these and other chronic conditions. Thank you!

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

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Since 1996, I had not ridden a bicycle… until now. After a great deal of planning, saving, and wishing, I rode this past weekend.

In 1996, I attempted to ride a tandem bicycle with my husband (who was then my boyfriend). His parents had a tandem and he was really into biking. Even though I hadn’t ridden in quite awhile, I gave it a try in 1996. Let’s just say it was a short ride. While I had not been officially diagnosed with vulvodynia yet, I knew that riding a bicycle had become extremely painful. The brief 1996 ride on the tandem made it clear to me that riding a bicycle with a traditional seat was physically impossible. Thus began my 15 years without any bicycle riding at all.

I haven’t written much about vulvodynia. Why? Well, all of the treatments I tried were useless. While I have a very capable doctor, he has been unable to find anything to effectively treat my symptoms. So, writing about vulvodynia isn’t really my favorite thing to do. I simply haven’t had much to say about it. After all, who wants to read me listing off all of the failed treatments I have tried for it? Today, however, I wanted to share some good news regarding engaging in an activity I had given up on… simply by finding the right equipment to accommodate my needs.

For several years now, my husband and I have discussed how I might possibly ride a bike again. He suggested that we look into a recumbent trike. This was not a purchase we had the luxury of just jumping into. Unfortunately, this type of bicycle (or tricycle, actually) is not inexpensive. We have been planning for this for awhile and looking at it as an investment. Rather than me being left behind at home for bike outings, I will now be able to participate.

Here is a quick aside about vulvodynia, which can cause tremendous, debilitating pain:

“Like many other people suffering from pain disorders, those afflicted with vulvodynia may often be impacted by the frustration of finding a diagnosis, subsequently confronted with an area of medicine that is still in relative infancy. The cause is still unknown and treatment success varies. Therefore, many become frustrated and sometimes depressed with a lower quality of life”.

Biking is a great way for me to get exercise. This is absolutely huge because my fibromyalgia and neuropathy make exercise very difficult. I can’t even tolerate gentle yoga due to the fibromyalgia. So, to have a means of getting exercise that my body is handling well is fantastic. Granted, my leg muscles were noticing that I was asking them to do things they are not used to when I took this for the first couple of spins. However, my body tolerated it quite well. I had discussed recumbent trikes with my physical therapist recently and she thought it was a great idea.

While I don’t normally make it a habit of referring to specific brand names on my blog, I am linking to the model I got so that if any other patients are looking for a recumbent trike, they will be able to see the model that is working well for me.

I should probably explain that I cannot tolerate sitting on any hard surface anywhere. When I am at the computer, like I am now, I am sitting on top of blankets that are folded and placed on my computer chair. So, for me to find the seat of this recumbent trike comfortable is nothing short of a miracle. The seat also has a back rest. It is amazingly supportive. With my history of back problems, this is important.

So, in writing this post today, my goal is not to say, “hey everyone who has vulvodynia… you would love this recumbent trike”. I know that it may not be feasible for (or desired by) everyone. Goodness knows it took years of planning for us to make it happen. My intent is to give people – no matter what their chronic illness(es) may be – hope that there are solutions available to solve many problems posed by chronic illnesses. I myself had given up hope for many years that I’d ever ride again.

It wasn’t until my husband and I began discussing this type of bike that I realized it might be possible for me to ride again someday. When we went to the bike store and I tried out this bike, I couldn’t believe how comfortable it was. After a short ride on Saturday and two short rides yesterday, I am learning how to properly shift the gears and am thoroughly enjoying simply being able to ride again.

As I coasted down a hill yesterday, memories of riding a bike when I was younger came back to me. It felt good to get fresh air and exercise. I’m really excited about having a safe means for getting exercise. I just wanted to share this story here. When I picked the title for this post, I tried to pick something that would be seen by vulvodynia patients who, like I was, are searching for ways to ride a bike despite the pain of vulvodynia.

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

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