browser life

A recent article from Toni Bernhard culled from a fibromyalgia Facebook page. Unfortunately, my browser crashed, causing me to lose several links I had set aside to post, but I found this one again:

Good Old Days Syndrome

Think how isolated you would be if you were home-bound, say, in the 1950's compared to today. There was no Facebook, no e-mail, no blogs. You couldn't rent movies; a lot of people didn't even have televisions yet. If you had a chronic illness, chances are there was no support group for it, limited means for researching it, and you may not have known anyone else who had it.

Found another goody on a fibromyalgia Facebook page. This article documents research on whether the "energy envelope" strategy (adjusting your activity level to not exceed the amount of energy you have for it) actually has a correlation to severity of CFIDS/ME:

Conserving Energy and Coping Work in Chronic Fatigue Syndrome Except When They Don’t: Study Suggests Large Group Gets No Help

Unfortunately, I fall in the "sh*t out of luck" category. I have scaled back my activity to a point where if I did any less, I wouldn't be able to take care of myself, which in turn would cause my health to get even worse. To me, the "energy envelope" is something invented by someone who has never dealt with uncertainty of chronic illness. It is not always possible to know how much energy I will have in a given day; it varies, and sometimes I feel like doing a lot more than is good for me. Also, I cannot always tell when I am overdoing it until after the activity has ceased; the interval can be several hours later or even a day or two later when I end up having to pay the consequences. Even the flares themselves vary; for instance, I participated in a picnic after church yesterday and felt somewhat ok at the time but began falling apart about 15 minutes after I went outside. Got home and dragged the rest of the day but didn't actually crash until midnight, and then I ended up having to sleep for 12 hours. But the week before, I went to church and then straight home, and guess what? Same reaction even with less activity to trigger it.

Have had this sitting on my browser for a few weeks. Got the link from a fibromyalgia Facebook page:

Nerve damage and fibromyalgia

I don't find this so very surprising, except maybe that it took so long for someone to take the possibility of neuropathy seriously enough to do a study on it. It can be difficult to determine, with all the myriad pains that are part of fibromyalgia, which are measurable and treatable and which do not actually stem from damage to the body. I have mild neuropathy, but when I had the nerve conduction studies done I had been told to expect that they would come back totally normal. The neurologists were genuinely puzzled by the results.

Got this from a fibromyalgia Facebook page. As if chronic pain patients didn't have enough to worry about:

PROP Painkiller Labeling Changes May Hurt Women with Chronic Pain

 It infuriates me that just because some self-absorbed people steal painkillers to get high, people who actually NEED the medication for legitimate reasons have to suffer. I personally can't take narcotics because of gastroparesis, but that doesn't mean I think others shouldn't be able to take them. I can easily attest to the agony of 16 years of under-treated pain.

A recent article by Toni Bernhard. It came from one of the fibromyalgia Facebook pages:

A Not-To-Do List for the Chronically Ill

I need to remind myself of number 4 often. Trouble is, the amount of time it takes me to get ready to go somewhere changes every time. A lot depends on whether my stomach is cooperating, whether I suddenly remember something as I'm heading out the door (like when I leave still in my house shoes), and when I'm so exhausted that I'm having trouble putting one foot in front of the other. But I didn't have the problem of arriving early even when I was well, heh heh.

This is the THIRD time I've gotten calls, including tonight, claiming to be Mac from Microsoft tech support, wanting me to given them information from my computer (even though I don't use Microsoft). This guy sounded like he was from a call center in India because I could hear other voices in the background, the connection was bad, and he had a heavy accent. He did know my name even though he couldn't pronounce it properly, and unfortunately, I did confirm my name because at first I thought he might be a legitimate caller. But he got nothing else out of me except my usual recitation that my number doesn't accept solicitations and to remove my name from his list. He kept talking, though, and I hung up. I tried *69, but it could not detect the number from which the scammer was calling.

Here is an article from the FTC about this type of scam:

Tech Support Scams

So please spread the word, and don't believe a person is from tech support unless you've called them yourself.

From "But You Don't Look Sick", written three years ago. This puts you inside the head of someone with chronic illness who has insomnia:

It is 5am. It’s a horrible, ugly hour to wake up, not yet morning, not quite night. Painsomnia?

I have many factors working against my ability to get restorative sleep. One is periodic limb movement disorder, where I twitch all night. Another is pain; it is quite an ordeal to get comfortable to drift off at the proper time. Then there is the tinnitus, the night sweats, and the lack of stage 4 sleep inherently caused by fibromyalgia. So I must rely on a high dose of generic Ambien to knock me out each night to even hope for something that resembles quality rest.

Great news from Celiac.com about food labeling requirements. We've only been waiting for many years for this:

What is Gluten-Free? FDA Has an Answer

For the uninitiated, the article also provides a good description of gluten. While I have been fortunate to not have been contaminated by anything that was labeled gluten-free that shouldn't have been, I know others who have. Also, I'm glad they cleared up the vagueness of labels like "no gluten" and "free of gluten" that are not certified. The only bummer is that it will still take another year before we can be sure that the labeling requirements will be enforced.

I did get to go on a short vacation last month. We had a coupon for a free night at a hotel in Minneapolis, and I was able to combine it with a 15 percent internet discount on two more nights. We went on Thursday the 18th and came home on Sunday the 21st.

On Thursday, once we got into Minneapolis, we had lunch at a local chain restaurant called Pizza Luce. I was able to get a small gluten-free version of their Greek pizza: tomato, spinach, feta cheese, red onion, Kalamata olives and artichoke hearts. It was awesome, and I was able to take half of it to the hotel because we had a kitchen with a full-size refrigerator.

On Friday the 19th, we went to the Mall of America for a few hours. It was far less crowded than last year, so we didn't have any incidents running into anyone with my wheelchair. On a whim, I went into Coldwater Creek, where it turned out they were having a clearance on jewelry that was buy one, get TWO free. I hadn't bought myself jewelry in 15 years, so I treated myself to a purple bead and crystal necklace, some slate blue square earrings, and some dangling crystal earrings. I spent only $30 on $140 worth of jewelry.

After resting in the hotel room for several hours, we left for a comedy club in St. Paul called the Joke Joint. Small family-run club with inexpensive tickets. The headliner was Sean Kent. I thought he was pretty funny, and it was cool to have a night out because we rarely get to do that.

On Saturday the 20th, I rested up in the morning, and in the afternoon, we went to the Walker Art Center, which is a modern art museum. Three of the galleries were closed for a wedding, but there was still plenty to see in the other three galleries. I don't know diddly squat about art, but some of it was really cool, and some of it I thought I could have done myself, heh heh. One exhibit was found art by a single artist from Mexico, and there was one gallery of just paintings, and the last gallery was from 1989 to present.

After touring the museum, we went across the street to the outdoor Minneapolis Sculpture Garden, where the items are on permanent display. The most famous sculpture is a ginormous spoon with a cherry on it that is on a pond and doubles as a fountain. The second most well-known is a jackrabbit leaping over a bell, which was my fave. Some of the sculptures are functional, like marble chairs, and others are purely decorative. There is also a conservatory with exhibits in the form of plants, and there is an outdoor atrium across the back of the park full of flowers. Had a great time there.

When we were done with the sculpture garden, we went to a small restaurant nearby called ChinDian. One of the owners is Chinese and Vietnamese, and the other is Indian and Malaysian, and the food reflects those cultures. They make all their sauces from scratch; you can even buy some to take home and add to your own cooking. I had a dish that contained rice noodles, sprouts, carrots, bell pepper, shrimp, and a mildly spicy tomato sauce which was very good. Dan got chicken curry, which I sampled and wholeheartedly approved, and I had iced ginger tea to drink.

We went straight home after checking out of the hotel on the 21st. I was a lot less tired than I usually am following a trip, at least I was at first. I didn't crash until the next evening. Still trying to get my energy back, but I am somewhat functional, and my brain is very happy to have gotten out of the house for more than a few hours.

When I can get sufficiently de-flared, I plan to write an article with some travel product suggestions. I found some not mentioned in previous posts that I think are worth sharing. Until then.....