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.

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

7 thoughts on “Life with ME: My technology lifeline”

  1. I totally understand the communication angle. there are times when in severe pain I can’t talk at all, but can slowly type, taking my time, and editing to make myself more clearly understood. And being able to comunicate has been proven to help people tollerate pain a lot more than when they are trapped inside their own minds.

  2. the internet has pretty much stopped me from going crazy over the years. It gives me a social life and stops me feeling so secluded when I am too ill to leave the house and interact with other people very much. At my worst typing on the computer is often so much easier than any other form of communication.

    And thank you, you have reminded me that I want give a sunrise alarm clock another try, waking up is so hard when it’s this dark in the mornings.

  3. It’s things like this that inspire me about technology. Sometimes I think it’s so easy to get caught up in all the bad side of technology. This is the good side. I think this post should be front-page news, Steve – “technology isn’t always bad!” Some papers seem (no names mentioned) seem to only report anything bad about it.

  4. It annoys me how technology, be it a motorised wheelchair or scooter or voice recohgnition software, that can help those, unlike me, with disabilities; and yet costs the earth. To me a civilised society should be developing as many techno tools as possible and providing them to those in need at a cost they can meet. It’s a waste of all the talent that exists amongst those who are disabled at the very least, and a moral issue that cannot be ignored.

  5. Very good keep it up Steven. I’m exactly the same and it’s strange seeing someone else live their life like I do.
    I would love to know what meds. You’re taken as my Doc gives me lyrica tablets for the pain and a sleeping aid at night. If you know of something better please post it as I can then refer it to my Doc.
    Thank you in advance. Paul F.

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