31 August 2011

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.

30 August 2011

Fundraising and Advocacy Fatigue

One of the (many many) cruel things about this disease is that fund-raising and advocacy for this illness has been largely left to the patients.

We're bedridden and might not have the energy to get up and brush our teeth, but we feel obligated to comment on an inaccurate or vilifying newspaper article. We're all struggling financially because of being unable to work and having to hire help for simple household tasks, but we scrap up a little bit to donate when there's a fund-raising event. We want hope, so we try to read scientific articles that are full of technical information that is difficult to understand, when we sometimes have brainfog so bad that we can barely read at all.

At some point, we have to remember to step back. That point will be in a different place for everyone. But we have to remember, we are patients. Our own personal health must come first.

Today I deleted the bookmark to the Vivint Gives Back project and was hit with a huge wave of relief. Don't get me wrong, I'm immensely grateful to Vivint Gives Back. But every day I had to remember to vote. Every day, 3 clicks, one to open the link, one to login, one to vote. It wasn't much. Hardly any effort at all. And yet it was a relief to be done with it.

We want to help others who are ill. We want to be advocates. We want to believe that we can write that blog post or Tweet or newspaper comment that makes someone believe us, that changes minds. We want to believe that the few pounds we can scrape up to donate will make a difference. We want to believe that we'll find something in the scientific journals that we can take to our GP and turn into a useful treatment.

And now this post is turning into something I didn't expect, as I realize something. I have been reading How to Be Sick by Toni Bernhard and tweeting some of the passages from my Kindle. And earlier I tweeted this passage. It's about how, as the Buddha said, "the origin of suffering is desire". It's the desire for things to be other than how they are that brings us suffering. And that's what we have to watch for when we engage in these advocacy activities. We must try to avoid getting so attached to them that they hurt our health and, more importantly, our mental well being. We have suffered enough.

There was another prophet who said "The poor will always be with us." He did not mean that we should not care for the poor, but that it was permissible to set that struggle aside sometimes, and care for our own physical and spiritual needs. If we need to take a break from ME/CFS advocacy for a time, the fight will still be waiting for us when we return.

26 August 2011

Apparently my illness is very invisible today

I called the landlord about a leak. He can't get anyone out till next week, so he describes a workaround that he wants me to do, which would require me being able to reach a small pipe just below the gutter.

Me: "I have no way of reaching that."

Him: "You can climb on a chair or something, right?"

Me: *after a moment of stunned disbelief* "No, I can't. I use a walking stick because of my poor balance. There's no possible way I can safely climb onto a chair."

A woman. On some chairs. On some vases. On a table.
Perhaps like this? Is this what you had in mind, Mr Landlord?

For nearly two years, every time my landlord has come over, he's seen me using the stick. Just outside my front door, on the way to the gate, the footing is treacherous and there's a place where there would be a one meter fall onto concrete if I were to have a bad fall. I'm very conscious of that, so I always use my walking stick when I go to the gate. Even if I'm having one of my best days and don't feel at all unsteady on my feet, I'm not willing to risk it. I think of it as a seatbelt - wear it every time, and you'll have it when you need it.

Not only that, but I told him I was disabled when I first left work. Of course, when he asked why, and I said "Chronic Fatigue Syndrome" he said, "Yeah, I probably have that too." So I guess expecting him to make the leap from 'regularly uses walking stick' to 'probably shouldn't try standing on a chair to do gutter repairs' was too much to ask.

I'm just glad I didn't have brainfog today, or I might have been too fuzzy to argue and ended up in the hospital.

*Photo by quinn.anya used with a Creative Commons license

24 August 2011

A Message From Vivint

Vote! Vote! Vote!

The Whittemore Peterson Institute has a very good chance to win the Pacific region, but we need to keep voting every day.

23 August 2011

My ME/CFS in Pictures

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

Caring for A Pet (when you can barely care for yourself)

Keeping a pet when you're disabled isn't easy. They still have to be cared for. They need food, exercise, and veterinary care, and when you're barely able to take care of yourself, this is hard.

 My baby
The food is the easiest part for me. I get it delivered from VetUK and any order over £19 is free shipping. I would use this service even if I were still healthy and had a car, because I was never able to lift 15 kg!

Exercise I have to pay for: £100/month for 3 hours a week. Included in this is teeth brushing and cleaning the poo out of the yard. I found my dog walker by googling 'dog walker' and the name of my town. These will usually be small family run businesses, but even if they don't have a website, they'll often take advantage of sites like yell.com or other online classifieds and listings. If this doesn't work, you can try looking in the local paper or asking your vet or other dog owners you know.

Veterinary care was the most difficult. My dog used to love going to the vet, but then she needed an operation to have a lump removed. After that, she associated the vet with pain, and would start shaking as soon as she got there. Add to that the physical stress that I have in leaving the house, and the fact that I'm not physically capable of holding her lead when she decides to pull... yeah, it wasn't fun. The gentleman who walks her is happy to take us to the vet as well, doing the dog wrangling while I do the decision making and payment, but it was still always a major ordeal.

But today I had the first visit from a mobile vet, who runs her entire business by making house calls. Because she's not based in my town, it was an extra £40 travel fee, on top of the cost of the consult and medication, but I consider it money well spent. Turtledog got along with her brilliantly - being examined by a vet in her own home doesn't trigger her fears. To her it was just someone else giving her attention! I will still need to take her to the local vet if there is any kind of emergency care needed, but for routine visits, the mobile vet only needs to come out once every six months, and she can prescribe medications by email in between visits.

I could add up the cost of pet ownership, and then the additional cost that being disabled adds to pet ownership. But I can't possibly calculate the value she brings to my life. So I make cuts in other parts of the budget, and consider it money well spent.

Do you have a pet? How has your illness affected them?

22 August 2011

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.

20 August 2011

Recipe: Lemon Water

Pitcher of Lemon Water
Photo by ex.libris

  • 1/2 lemon, sliced
  • 1 litre of filtered water

    Put water in pitcher. Put lemons in water. Leave the lemons in the pitcher when you pour yourself a glass, and you can keep topping up the water for two or three days before you need to toss the lemon slices and make a new batch. Store in the fridge. So refreshing!

    Yes, this is far too simple to be called a "recipe", (and even so simple, I have to get someone else to slice the lemons for me) but it's my main weapon in my battle against my Coca Cola addiction. I haven't seen any weight loss yet, but I've at least been consuming less soda, and that can only be for the good. ☼

    Losing Weight

    Since I got sick, I have gained about 7 to 10 kg (15 to 20 lbs). I don't know exactly, because I never bothered weighing myself back then. I'm 156 lbs now, or 71 kg. Not obese, but definitely overweight, and at the point where the extra weight is uncomfortable to carry around. So I'm trying to lose weight without being able to exercise, and without having the energy to prepare as much as a bowl of cereal some days.

    Yes, this will be a challenge. My dream goal is to get down to 65 kg / 145 lbs. My realistic goal is to get below 70 kg and stay there. If I gain any more weight, I will need all new clothes, which means spoons expended on shopping and ordering and returning what doesn't fit and... ugh. DO NOT WANT!

    So the posts tagged with 'diet' will be what I'll be trying and learning from along the way. Join me on this journey, won't you?  ☼

    18 August 2011

    Before and After: A Story of Two Journeys

    Several years ago, I had to go to London for something involving immigration. I walked to the train station, got on the train and travelled two hours during the morning commute. I'm far enough from London that I had a seat, but all the seats were filled up during the first half hour of the journey. When I arrived in London, I got lost a few times before I found the office where I was going. Once there, I had to wait in a queue of about an hour to get in, then, once in, sit and wait for my name to be called. By the time my name was called, it had been four or five hours since I'd left home. I had come prepared with loads of paperwork, but once in the office, they asked me for a document I didn't have with me. Without it, the appointment couldn't continue. I was disappointed, of course, but not overly so. "Can I come back tomorrow?" I asked. "Oh certainly," I was told. And so, except for the part where I got lost, I did the whole thing again.

     Here's a journey I took a few weeks ago, for comparison:

    I knew I needed to go to the post office on Thursday, so on Wednesday, I rested the entire day in preparation. On Thursday, I prepared for the journey in stages. I checked that everything I needed to take was in my bag - cash for the taxi, debit card, mobile phone, parcel to mail, keys. Took a break and rested. Had some breakfast. Rested. Got partly dressed. Rested. Finished dressing. You get the idea. When I was finally ready to go, I called the taxi, put the dog in her kennel, and headed outside to wait. (I could wait inside, and the taxi driver would come ring the bell, but that always makes the dog go crazy to hear the bell when she's already in her kennel, so I go outside. I hope that won't be one of the compromises I end up having to make one day.) Since I knew I'd have to wait in a queue, I took my walker so I could sit down. I had to pull it up three steps to get to the back gate. The front gate has a dozen steps, so taking the walker that way is impossible. The taxi trip was fast. The journey is one that a healthy person could walk in about a half hour. The driver helped me with the walker, putting it in and out of the boot. This is something that would be impossible for me to do. Once at the post office, the queue wasn't very long - maybe 5 minutes at longest. There's a busier one in the center of town where I've experienced wait times of twenty minutes or more. Even so, five minutes means I needed to sit and rest, which was the main reason I took the walker. When I was finished, I called for a taxi to return home. Getting the walker down those few steps at the end was harder than moving it up at the beginning, simply because I was so tired. I went inside, tended to the dog, and then collapsed in the bed where I slept for a good three hours out of sheer exhaustion. If someone had told me I'd have to go back out to the post office the next day, I wouldn't have laughed at them. Laughing would have required too much energy. The journey had taken just over a half hour.

    Now I recall that trip to London with something between awe and bitterness. It's as if I once swam the English Channel, or climbed Everest, and then breezily decided to repeat the experience the next day.

    And... well... this is where a conclusion would go, but I don't have one. There was a time when I took trips to London. Now I do not. And life goes on.

    17 August 2011

    Discrimination Against Service Dogs

    A story from Bensalem, Pennsylvania.
     Dr. Priya Punjabi argues that it is her right to determine who enters the property and that a large animal could scare or upset her patients.
    Punjabi, who said she is afraid of dogs, added that her request was polite.
    “We simply asked him to step outside,” she said. “I have my rights and my phobias, too.”
    We still have so far to go.


    16 August 2011

    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.


    My last GP visit, a few weeks ago, I asked for some help with pain relief. He has said I can take up to 8 paracetamol (aka Tylenol) a day with no problems, but I worry about liver damage. So I've been limiting it to 6, and there are days when I need something more. So he prescribed Tramadol, a mild opioid.

    On the one hand, I feel noticeably better when I take it. In addition to pain relief, it also acts on serotonin and norepinephrine, so there's probably several things going into the 'feeling better' result I'm getting.

    On the other hand, it depresses the libido and inhibits orgasm.

    Since I've been ill, I've found it difficult to make decisions. My mind just keeps going round and round and whatever part of it used to jump in and actually choose seems to be no longer working. I don't want my sex life broken, but on days when I was in a lot of pain, I probably wasn't in the mood for sex anyway. But if it makes me feel better, I might want to take it regularly. But sex makes me feel better too. Round and round and round my brain goes.

    Not sure where this one will stop. I see my GP again on Sep 1, but I think I'll wait till the visit after that to raise the issue, having given the drug more time in case it's one of those things where the side effect goes away when you're used to it.

    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.

      14 August 2011

      The Scorn of the Healthy

      It happened today. In a forum that I frequent, someone reported that they had great difficulty registering at the site because the captcha image was particularly hard, and the form would reset if you got it wrong. The person concluded by saying the visually disabled would find it much more problematic.

      The first response, which was from a fellow poster on the site and not site admin: "I didn't find it difficult." The OP (original poster) said "That's like telling someone in a wheelchair that because you don't find the steps difficult, they shouldn't."

      That brought the recriminations on in earnest. People demanded that the OP describe their "disability" (sneer quotes included). They pointed out that if he/she could make long posts, they shouldn't have had difficulty with the registration form. I posted to say it was really nobody's business what the OP's state of health was, and was shouted down. "They made it our business. This is a vital piece of information."

      I would be remiss if I didn't point out that a few people, in addition to me, did speak up in the OP's defense, and that none of the people who were being rude were affiliated with the forum's administration. The admin person was perfectly respectful and posted to say that he was somewhat limited by the forum software but that he would look into it.

      It's still so discouraging though.

      Getting Sick

      "The world has teeth, and it can bite you with them any time it wants." Those words, from The Girl Who Loved Tom Gordon had always felt true to me. But I think the quote should read that it will bite you with them. Because none of us escape its bite.

      It started in November 2908, with a sinus infection. It didn't really start there. I knew there was something wrong with me. There were signs before, for years prior. But let's keep it simple and say it started then. Because though the signs were there before, November 2008 was when it grabbed my life in its teeth and shook it hard.

      I had a sinus infection while I was visiting the family. I went to the walk in clinic, got antibiotics, felt better, flew home, went back to work. I was only there a day or two before the infection came back and I had to leave work again. More antibiotics. Then back to work. It was very stressful. There were employee evaluations - god, it was so awful that even typing those words brings it all back. My chest gets tight, tears start to well up. I wasn't sick any more. The infection was over. But I was so stressed out that I had to leave. I got a letter from the doctor to sign me off for stress for 2 weeks. But I should have known it was more than that, because the day I walked out of the office, I called a cab instead of taking the ten minute walk home.

      The 2 weeks turned into longer, but I was sure I knew the answer. It was my depression. I had been managing it for years with antidepressants, and every so often I had to change the drug. SSRI poop-out they called it. So I'd get a new drug, go through the adjustment period, and I'd be back at work.

      The drugs were changed. I was referred to some stress management workshops and went to about 4 of them. The others, I was too tired to make it. But it was okay. Fatigue was just a symptom of depression, and my depression was getting better.

      And then, my depression was gone. I could imagine going back to work. I even had a meeting with the woman from HR about how to manage my return to help alleviate my stress. But I was still... so... tired...

      And it was just getting worse.

      It was at my GP appointment in May 2009 that he first mentioned Chronic Fatigue Syndrome. The diagnosis felt like a punch in the gut. I had read about it, and even though the symptoms fit me to a T, I had clung to the first line: "Have severe chronic fatigue for at least six months or longer with other known medical conditions (whose manifestation includes fatigue) excluded by clinical diagnosis." Since I had depression, and depression includes fatigue, then I couldn't have CFS.

      Except of course I did. And I knew it was true as soon as I heard him say it. I knew I had been deluding myself. And I knew it had no cure.

      But even while most of me was in shock and grief, there was also relief. Now I know what it is. Now I know why all the work I'm doing to get over the depression isn't giving me more energy. Now I'm free to stop trying to get back to work and get back my old life. Because now I know my old life is gone.