Foggy is still winging his way to Melbourne to see the Emerge Australia gang (9 days and counting….eek). I’m making the most of the peace and quiet and, in slow time, getting ready for our M.E Awareness Week events next week (full info on mefoggydog.org). The week so far has been very busy and has involved lots of communicating online mostly via my smart phone. That is the inspiration for this blog!
If M.E could be summed up in one sentence I think it would be brain and spinal cord inflammation. That kind of hints that everything related to the brain and spinal cord is affected by the illness. That’s a heck of a lot of other body systems and parts that are dragged along for the ride.
Yesterday, my brain felt like it was very inflamed and swelling up to burst out of my skull! I realise that wasn’t actually happening but this was how it felt. I felt as if every part of my brain had puffed up and was squished against hard bone, oozing out between the cracks and causing me to feel like I couldn’t get a thought out. It’s a very hard to describe feeling, it’s a kind of numbness of thought process.
I find the act of checking Twitter, email, Facebook, Instagram, blog comments throughout each day incredibly tiring. But, that is the nature of my Foggy work so I am not complaining. The immediacy (is that a word??) of using a smartphone to check these channels means I feel like I am ‘switched on’ for about 12 hours a day. Even when I am ‘resting’ my phone will be pinging and vibrating next to me. Last week, I turned my phone off at 6pm (that never happens) and didn’t turn it on until 7am the next day. WOW, that felt good! I could turn off completely without distraction. The downside? I had 47 messages to catch up with whether they were tweets, Facebook messages or emails received. This is why I don’t ‘turn off’ regularly, because I am in demand 👊 Which is absolutely wonderful, I am very happy to talk to any Foggy Followers or people who want to get involved with our cause, but it does take its toll every once in a while.
Let’s talk cognitive impairment. I can always tell when I am reaching my limit in terms of brain function as I have typos in every single word I type on my smartphone. It is so frustrating! If I have to type a long wordy reply, I often have to say that I’ll reply on my laptop the following day. My hand/ eye co-ordination is rubbish when my body starts to shut down so typing by touching my finger to a touchscreen is virtually impossible without typos. My brain slightly misjudges where each button is. The one word I ALWAYS mistype is have. I always type ahve. I have done since I became an M.E person. Do you have one word that you always mis-type? I’ve probably posted blogs with the odd ahve typo (that was deliberate ha!).
The actual physical act of holding a smartphone is also tiring, do you agree? Having to use arm muscles to hold it 2 ft from my face uses energy too. Sometimes, when I am resting, I try to lay my phone on the bed next to me so I don’t have to hold the phone but then I have to kind of prop myself up to be able to type…. This tiny act of typing on a phone is a minefield isn’t it?! Business friends of mine have suggested I do my work on a tablet…..NO! At least a laptop has keys and reduces the risk of typos!
I like to give full answers when I respond to a query, sometimes I may have typed 4-5 sentences on my phone but have to give up because I’m not getting anywhere fast! Sometimes, I have the energy to go back and retype words but other times I just figure that the reader would be able to guess what I meant! This frustration also makes me grouchy so I would like to apologise to anyone I am grouchy with because of having an overgrown brain and poor hand/eye co-ordination!
(and Foggy OBVIOUSLY)