Tips for the dentist

Adrienne Dellwoo posted about going to the dentist with ME or Fibro. For me, the worst part is how sore my muscles get from sitting still for so long.  But I have some tips that help:

1. Definitely start with communication. Tell them you need them to be as gentle as possible with scraping, probing, etc.

2. Ask for a bite block to hold your mouth open rather than you trying to do it yourself. Take frequent breaks to have them remove it and let your jaws rest.

3. Bring a seat cushion and a neck pillow.

4. Take any of your as-needed pain medication before you go.

5. Plan for several days of rest afterwards.

6. Practice preventative dental care to try and avoid problems that will require extra dental work. If any of your meds cause a dry mouth, this puts you at extra risk for tooth decay, so be aware!

Product recommendation: Laptop gel cooling mat

If you're bedridden, a laptop can be your lifeline to the world. Of course we're always told that we aren't supposed to use laptops on soft surfaces, or they'll overheat.

This is where a cooling pad comes in. I've tried the ones with a usb fan built in, and I couldn't handle the extra weight and especially the extra noise. I kept looking for a solution, and saw the Newlink Cooling Mat. It has crystals inside, which absorb heat until they eventually turn liquid. Then you just set the mat aside until the gel hardens again into crystals.

No more overheated laptop!

I was skeptical, but desparate, so I ordered one off ebay. And to my surprise, it actually worked! I run RealTemp to make sure I know when my laptop is getting too hot, and it generally runs about 10 degrees cooler (in Fahrenheit) when it's sitting on the mat. It even keeps my computer cool during processor intensive activities, such as when I occasionally play Civilization or have too many windows open.

In fact, it's been so useful, that I'm about to order another one, so that I have one to use when this one has all turned to gel and needs to cool down.

I imagine these are available in the US as well, but it's too hard for me to search for US products when Google keeps diverting me to UK sites. But if you search for 'Laptop gel cooling mat' you should be able to find it. It's a great product and inexpensive, and keeping your laptop cool will prolong its life.

*The link goes to Amazon UK, and any purchases you make will benefit ME Research UK.

My ME/CFS in Pictures

Welcome to Patients for a Moment:
Wordless Wednesday

My wonderful family helped to decorate my walker with nail polish.

Kindle and ME/CFS

I used to be a voracious reader, finishing most books in one or two sittings, even if it meant staying up all night and being bleary eyed at school the next day. When I entered the working world, I tried to be more responsible, and only book binge on weekends, but I still slipped occasionally.

Then I got sick, and it got difficult to read. I would read the same page over and over before I could extract meaning from it. I would get aching muscles from holding a paperback book open. Instead of binging books, I was nibbling them.

For about a year, I used a wonderful service provided by my local library, where I could request books online or by phone and volunteers would bring them to me. If I didn't request specific titles, they would just gather a few based on criteria I had given them. But it was getting more and more difficult to read. The last book I got from them took me six months to finish.

Then my parents bought me a Kindle for Christmas. If you're a reader with ME/CFS, I can't recommend it enough!

• It's lightweight. Lighter than a paperback, and doesn't have to be held open. I can hold it and turn pages in one hand, and easily switch to the other hand when I get tired. 
• It remembers. No more losing my place. Well, it's still possible to lose it, but it doesn't happen as often. And I can do a search for a phrase I remember to get back to where I was.
• It holds all the books I want! When my brain isn't up to the history books that I love to delve into, I can switch over and re-read The Hobbit for the hundredth time. When I want to look up something in a reference book, it's right there. No more pile of books by the bed.
• Instant dictionary. I can easily look up any word that brain fog is preventing me from understanding.
• Instant delivery of books. For someone who is housebound, this is wonderful. When I have the spoons to read a book, I can buy it and start reading right then.
• Easy bathtime reading. One of the best things I can do for my symptoms is a long epsom salts bath. And the best way for me to stay in the bath, is to have something to read. I seal the Kindle in a ziplock bag, and can read in the tub with no worries about drips or splashes.
• Adjustable text size. When my eyes get tired, I can just make the text size bigger. Try doing that with a paper book!

My experience has been with the Kindle, but my mother owns a Nook Touch, which is very similar. If you are considering both, I recommend watching some of the youtube reviews that compare both devices to help you decide which is best for you.

So often we think of disability equipment as being something from a specialist store, but it can also be something that's easily available to everyone. I would have enjoyed a Kindle as a healthy person, but as a sick person, Kindle has kept books in my life when I would have mostly had to give them up.

The Compromises We Make

I did something today I thought I'd never do. I bought microwave popcorn.

I love popcorn. Love it love it love it. But I like it popped on the stove, preferably in coconut oil. Microwave popcorn I always considered an abomination. But because of the effort of standing by the stove, I haven't made popcorn in months. Even after social services got me a perching stool to assist me in the kitchen, it is still a large effort hurdle to get across, compared to three minutes in the microwave.

It's not bad. I didn't think of adding seasoned salt to it, or shredding cheddar cheese over it, this time, but that will probably help. (Since I need to lose weight, I probably should continue to forget the cheese option.)

I've made compromises, but this is a line I thought I've never crossed. But what the hell, it's a tasty line. ♥

Adapting and Finding Help

When I first got sick, I kept trying to do things myself. This resulted in FAIL. I tired myself out, and most of the stuff didn't get done. I've learned since to evaluate activities carefully.

• Does it need to be done at all? A lot of stuff that used to be essential in my life has gone away. Some of it is missed, some not.
• Can it be done easier? This sometimes can mean getting equipment that helps in performing the activity, such as a tumble dryer vs a clothesline. Or simple things like putting a chair by the bathroom sink so I can sit while I brush my teeth. Removing clutter and arranging your home to make day to day life easier is also a possibility.
• Can it be done online? I do the bulk of my shopping online, including groceries. In the UK, the major grocery stores all deliver, and there is a milkman with free delivery who can top up between visits. I use the internet to buy clothes, books, household products - pretty much everything. It is very rare that I need to physically go and purchase something. I also try to do as much of my communication online as possible as I find it much easier to type than to speak.
• Can it be done by someone else? Since becoming sick, I've had to hire someone to do the household cleaning and someone to walk the dog. There are mobile hairdressers who will come to your house to cut your hair, mobile vets who will make house calls, care services who can assist in personal care that you can no longer do for yourself. I'd also put in this category using a cab if you can no longer drive safely and are unable to use public transportation.

I've started a list of links on the side of the resources I have found, in my three years of illness, to be the most helpful to me. Those that are specific to the UK, I have flagged as such. I hope other people will gain as much from them as I have.