Conversation and Confusion

Well I've not written anything useful in a while, and with my boyfriend beating me on stats for his blog, (which is brilliant by the way, check it out here for some real laughs!) I thought it was about time to write up something new, and slightly more M.E. related. This is the subject of social interaction, memory, brain fog, memory, and conversation, sparked my my friend Donna's first blog post, which you can read here.

When someone comes to see me, they see a pale, tired looking, but reasonably alert looking girl, propped up in bed with an armada of pillows and a smile on her face. That is, if their visit was planned and planned in advance, so that I've been given sufficient time to rest before their arrival, in order to look vaguely 'with it' and human. What they don't see is the immense effort I am putting in to every aspect of their visit, concentrating intently on their conversation, so that I can keep up, and 'mhmm' and 'yes' in the appropriate places. The last thing you want is to be chatting to someone who's just told you their rabbit was savaged by a dog, and reply with a smile and a 'good, good,' because you weren't following the conversation, because your brain is actually made of candy-floss. 

Another thing that is really hard about social interaction with M.E, is hiding your pain, so that people don't fuss over you, which for the record, nine times out of ten, makes you feel a whole lot worse. Pain is a tricky thing to handle, and when you're already on the strongest pain killers the doctor can prescribe you, you feel like a bit of a pansy wincing at every muscle spasm and bone ache you're pretty used to already. I tend to keep one of my hands under the covers, and squeeze the life out of one of my teddies if it hurts (poor Ted,) but there are many different coping strategies for controlling your pain when it is socially unacceptable to scream, although screaming itself is probably too much energy anyway. Breathing is a good one, taking long, deep breaths through your pain. Another thing that might help, is to tense up the part that hurts as you breathe in, and then relax it as you breathe out. One thing I will say, is that if you're with people you trust, don't be afraid to let them know you're in pain; it's all right, you don't always have to be the strong, 'together' one. After all, it's you with the severe, crippling illness. 


Aside from the embarrassment, however, brain fog can provide some much needed amusement. The silly things we do when we're not quite on the ball can often lighten the mood, especially if visitors are present. For example, I've once brushed my nose with a toothbrush, tried to flush my commode (though that was not in the presence of visitors) and have blown on my cereal on more than one occasion!
I also tend to muddle up my words; calling my boyfriend dad, asking for 'idiotic sports drinks' then correcting with 'ironic sports drinks' all the time meaning 'isotonic sports drinks!' And other fairly amusing things, which I cannot remember, due to brain fog.

On the subject of memory, I'd like to finish with this aspect of the cognitive problems an M.E. sufferer faces daily. I forget things, a lot. From trivial things like how many ready meals are left in the freezer, to more worrying things like who my boyfriend is and the time of year. Fortunately, these more serious episodes happen rarely, however they can be quite scary for myself and those around me. Though recently they've been on the increase. I fear I keep overdoing it each day, but I'm struggling with pacing myself, and leaving the tasks to be done to others. So, in lieu of this, I am going to rest now, goodnight.
Alice© Alice Daley 2013