Life with ME: My technology lifeline

I have M.E. It’s a crippling disease that robs people of their capabilities and their independence. Here’s a good video about it on Youtube. I am not as badly affected as some people with ME. I am able to leave the house, ride my motorbike (sometimes) and generally don’t need constant care. I even spend part of my time running a business. Other people that I know are not always so lucky. Even with my relatively minor disabilities, I would have quite a miserable existence if it were not for one thing.

Technology

Technology provides a massive help to me in all aspects of my life. Technology helps me sleep, wake up, eat, communicate and rest. Here are some of the things that help me.

Communications

I often get so tired that I cannot speak. I also find that when I am that tired, my brain trips up even thinking of sentences to say. When I am in this state, I have found that I can still type on a keyboard or on a touch screen phone. Not only that, but I can type coherent sentences, partly because I can edit them before sending them.

Social networks like Twitter and Facebook allow me to talk to people about anything I want, at nearly any time of the day. When I can’t sleep at 4am, I can talk to people with the same problem. When I am stuck in the house for days on end and see no one except my wife, I can talk to people on the internet.

ME includes constant muscle pain which gets worse after any activity. This applies even to the small muscles in my hand. As a result I am unable to hold a pen for very long, and activities such as filling in long forms leave me in agonising pain within minutes. I am able to type where I cannot write with a pen.

Food

In a similar vein, I cannot prepare food or cook without severe pain. Carrying a saucepan is tricky. Carrying a kettle when I don’t have the strength could be highly dangerous. Stirring food hurts. Chopping food can make me cry out in pain. I avoid food preparation wherever possible but there are frequent occasions when I have no choice in the matter. This is where frozen meals and microwave ovens are lifesavers for me. If I didn’t have access to pre-prepared meals, (Often cooked and frozen by my wife) a freezer and a microwave oven, I would need much more care than I do.

Memory

ME can affect my memory quite badly. I also have a general problem of getting so into one task that I forget to take my medicine at the correct time, forget to take one of my regular rests, and even forget to sleep. I rely on Google Calendar and on my phone to help me there. Any event or task that I have to do goes in to my calendar, which will sound an alert on my phone at the right time. I have my all too frequent rests and my multiple times-per-day medicines set as alarms on my phone. The only thing I need to do now is actually pay attention when it beeps!

Bad memory also causes a number of other problems for me. I make extensive use of Springpad to help me out. A Springpad app on my Android phone lets me write quick notes and also take photographs when I am away from my computer. It all gets synchronised with their website, and when I need to remember something I can look up the photo and the note to help me. Sometimes I really can’t remember the words that I need, or what I was about to do. I frequently refer to Google search to look for keywords related to the concept I am after, and it usually provides the word or task that I needed to remember!

Sleeping

I struggle to go to sleep, and I struggle to wake up again. (You can read about the waking up bit in my earlier blog post, A Morning With ME.) One very useful aid to sleeping and waking is my Sunrise/Sunset lamp from Lumie. It has an alarm clock and a lamp in it. At night, I can set the alarm, then press the button to get a simulated sunset which isn’t that effective for me as it doesn’t stop my brain from whirling with thoughts, but it is sometimes helpful. In the morning, it simulates a sunrise over about half an hour and provides a much easier wake up than a straightforward alarm clock.

I also struggle to rest. A big problem with ME is having too many thoughts and being unable to stop thinking about things and relax. I have to spend 20 minutes resting several times a day in order to function well, and staying there to rest is very difficult to me because I tend to think of things like this blog post, then get up to do them! The solution is that I download podcasts of radio shows, put them on my phone, and play them when I am resting.

Computing

With all my use of the computer, being sometimes physically unable to use it can be devastating. I use a few tools to help me keep using it.

f.lux is an excellent bit of software that adjusts the colour temperature of my screen based on the time of day. This isn’t the same as adjusting brightness, it actually changes the mix of colours to suit the lighting that I am using and the level of daylight available. Using a lower colour temperature at night helps reduce eye strain and makes it more comfortable to use the computer, as well as making use of the computer just before sleep less of a factor in insomnia. You can download f.lux for free here.

Web pages often have small text, clashing colours, backgrounds that are too bright and worse. There are two ways that I cope with this problem. The first is Readability. Readability is installed as a bookmark button in the toolbar. When I find a long web page that is difficult to read, I only have to click the bookmark and the page transforms into large, good contrast text with a much darker background. Brilliant! Or, err, less brilliant. Cool. (Install Readability here.)

Sometimes I can’t physically sit at the computer. This is where a Kindle ebook reader is useful. The Kindle has an electronic ink screen which is designed to look like paper. It is not backlit like an LCD computer monitor is. It is equiped with WiFi and documents can be emailed to it. I use a tool called RekindleIT which again, is installed as a bookmark button. When I click the button, the web page that I am reading is emailed to the Kindle ready for me to read in bed or on the sofa. (Install RekindleIT here. I have written more about putting documents and website on the Kindle at my business website.) I should also mention that the Kindle allows me to read large, heavy books that would otherwise hurt me to hold and read for very long.

Working

Having all these things wrong with me makes it hard to work for a living. With incapacity benefit and disability living allowance disappearing, I don’t have much choice. For the last year I have worked as hard as I can (even at the expense of any remaining health) to set up a computer repair and web development business along with my Dad and other family members and friends. I’m rapidly heading in to one of the worse parts of my illness though, and I expect to spend a few weeks, even months, in bed starting any day now.  Mobile technology will allow me to keep working to some extent. I can answer technical support queries and direct my business through email and chat. I can setup websites for my customers using my laptop from my bed. It won’t be pleasant, but unlike the last time I was imprisoned in my own bed, this time I don’t have to go insane, and I might even still do some work.

In summary, then, technology allows me to:

  • Keep communicating when I can’t speak
  • Chat to people when I can’t get out
  • Write long texts and fill in forms when I can’t write with a pen without pain
  • Heat my own food instead of requiring someone to do it for me
  • Remember to take medicine and rest at the correct times
  • Keep notes and photo notes to help me remember information
  • Remember words, concepts and tasks by searching the internet for related things
  • Wake up in the morning
  • Rest without getting too distracted
  • Keep using my computer by adjusting it to prevent eyestrain
  • Keep reading when I can’t physically use my computer
  • Undertake paid work when I can’t even get out of bed

ME has tried its best to rob me of a decent life. Technology has given me a way to fight back. I don’t have to accept my quality of life being taken from me. Technology can help others to say the same.

Marketing on Twitter: Don’t spam me!

In this article I will discuss various different ways of using Twitter and how to make use of it as a small business. The advice contained here is aimed at the very small business, as well as individuals who are their own brand such as authors, journalists and artists. Continue reading “Marketing on Twitter: Don’t spam me!”

The Twitter news frenzy

The news media has been telling people that recent protests have been organised via twitter. That was spot on, but their attempts at explaining how have not been so accurate. For the people that don’t know, here is my explanation.

Twitter lets its users post a public message (tweet) of 140 characters in length. Those messages are automatically seen by their followers. Anyone can follow any other Twitter user and their tweets will be displayed in their “Twitter stream.” A tweet can also be aimed at or mention a person by including their name prefixed with an @ symbol. For example “@latentexistence Hello Steve!”

In addition, tweets can contain a subject prefixed with a # (a hash) and that is called a hashtag. Clicking on a hashtag brings up a list of all the other tweets containing the same hashtag. In this way it is possible to see a stream of tweets on a given topic. The most popular hashtags at any one time are called Trending Topics. Twitter shows a list of these on the front page. Finally, if a person likes a tweet they can “retweet” it which will send it out to all of their followers.

While most tweets are just inane chatter, many complete rubbish, a tweet that contains concise, well-written information, a link, a picture or a video, and that has the right hashtag is likely to be retweeted by a good percentage of people that see it. In turn it can be retweeted by their followers too. There are some people that have much more influence than others often because of the speed of their information or the quality of presentation, and these people tend to have more followers than average, and achieve far more retweets then others.

When a good tweet with a hashtag appears,  it can be retweeted over and over again because the tweet appears in the search for a given hashtag. Someone sees it, likes it and retweets it. Since the retweet also has the hashtag, the tweet appears in the twitter stream again and the whole process repeats. A really popular tweet can appear over and over again for hours.

This whole process goes in to overdrive when it comes to protests. It starts with getting the people there. Many people in search of a protest to attend ask about it on twitter. They are usually directed to the relevant hashtag such as #dayx3 or #ukuncut, and from there to the relevant website or facebook event. On the day of the protests, people start tweeting with those hashtags and anyone watching will see a steady stream of people announcing that they are on their way and how they have prepared.

Later on as the protests start people that are their take photos, videos, and send them to twitter along with their observations, in 140 character form. Other people watching at home will then retweet a lot of it to their followers and of course with the appropriate hashtag. That loop of tweet – hashtag – retweet becomes the main driver of the important information. In many cases people at the protest are sending out information about where they are, where they are going and what the police are doing is picked up by other protesters and acted upon.

During yesterdays protests the police announced that protesters were free to leave the crowd if they left via Whitehall. This information was given to the crowd through loud hailers, but also announced by the police via twitter. It was of course picked up by many people watching and retweeted. Unfortunately for the people that trusted the police and wanted to leave, they were met with batons and charging horses. Word quickly spread through twitter that in fact many people could not leave.

There are dangers to this system though, as I myself found last night. A photo was taken some time before midnight, of the thousands kettled on Westminster bridge. That photo was sent out on twitter with the message that although the police were still holding those people in freezing conditions, without toilet facilities or food and water, the tv news channels were completely ignoring it. The message was of course retweeted. Unfortunately there was no timestamp on anything, and so the message was also retweeted at about 12:45, by which point the protesters had been allowed to leave. I commented on the cruelty and legality of this containment at 12:50, and my own comment was picked up and started to be retweeted in that feedback loop of hashtags, eventually reaching 34 retweets and a cascade of other comments. Some time later although I commented that we had no up to date information, people were still convinced that the crowd was being held and it was only when someone tweeted that they had been able to cross the bridge that twitter calmed down and believed that the kettle was over.

Twitter is a wonderful tool for coordination through crowdsourcing, an incredibly fast way of getting news hours before the BBC or Sky news catches up, and fantastic for sharing information. It’s downfall is the way in which information is given too much trust, and fact checking is poor, sometimes even on my part.

You’re all criminals

You’re all criminals. That’s not a sleight on your character, it’s just a simple fact. The law, as it stands, criminalises nearly everyone that writes stuff on the internet, or uses a telephone, which I am assuming is all of you.

The law in question is the Communications Act 2003, which you can read here: http://www.legislation.gov.uk/ukpga/2003/21/section/127 It is the law under which Paul Chambers has just been prosecuted for using twitter to send a joke to his friends.

Here is the relevant text:

(1)A person is guilty of an offence if he—

(a)sends by means of a public electronic communications network a message or other matter that is grossly offensive or of an indecent, obscene or menacing character; or

(b)causes any such message or matter to be so sent.

(2)A person is guilty of an offence if, for the purpose of causing annoyance, inconvenience or needless anxiety to another, he—

(a)sends by means of a public electronic communications network, a message that he knows to be false,

(b)causes such a message to be sent; or

(c)persistently makes use of a public electronic communications network.

If I read that right (andI may be wrong) then telling an untruth in jest to wind a friend up is illegal. Telling an obscene joke is illegal. Putting something obscene as your status on facebook is illegal. Sarcasm and Hyperbole are both illegal.

See you all in prison.