Today is Severe ME Day. My plan was to write a post about the Pomodoro TechniqueTM (as a form of pacing) this week. However, my experience last night has led me to change tack.
Yesterday evening I got deeply upset, seemingly out of nowhere. It wasn’t just a few tears running down my face, I sobbed loudly and uncontrollably. The trigger was an argument with my partner, but it was a silly misunderstanding about practical plans, it didn’t account for my reaction. I was shocked because since my ME relapse two years ago I’ve been guarding against comorbid mental health difficulties very carefully, as I believe it is easier to prevent depression and anxiety than it is to get rid of them once its got hold. I mostly feel content and haven’t cried for ages despite my symptoms and limitations.
In our house we have a label of Easter Egg Argument which comes from an infamous upset about 7 years ago supposedly over an Easter egg, which was really about my partner having to work abroad for 6 months. Now if arguments escalate like this I look for the real trigger. I think last night it was touching on how you plan for the future with this condition. You can read more about my situation in My Story and This is ME post, but in short I have been housebound for the last 2 years. Last night this felt like an indefinite sentence of house arrest.
What does the future 2 years look like?
Future Present – I stay mostly housebound with fluctuating symptoms and pay heavily for odd trips out
Future Dystopia – I slowly (or suddenly) deteriorate to the level that some other people with Severe ME experience, unable to get to the toilet or feed myself
Future Utopia – I slowly (or suddenly) get better and resume normal life but without pressure to return to work too soon.
Future Fluctuating Upward Trend – I go up and down but over time improve and regain some independence (this was my previous experience).
To what extent do I have control over these outcomes? And how likely are they relative to each other? I don’t know. I believe my actions do effect the likely outcome but I think some of it is down to chance.
The depth of this uncertainty seemed to be unleashed in me last night like the story of the child taking their finger out of the dam. What makes this type of experience more frustrating to me is that I’m at once both a sensible psychology graduate commentating the experience AND a frightened little girl sobbing from deep in her soul. So I’m thinking things like “this is just catastrophic thinking, and now I’m getting into same state recall so I’m just remembering difficult experiences to do with my ME because I’m already upset, but I’m not upset because of that thing. Maybe I have low blood sugar. Perhaps it will be good to let this out, I’ve obviously been suppressing how hard I’m finding this. Oh no I read recently that that isn’t backed up by research (why was that?). But I do feel some cathartic release. No I feel deep sadness again. I should stop crying, it is using too much energy. I’m suddenly not coping after coping well for so long because I’ve been less disciplined about meditating. No that’s more complex because there must be a reason I’m resisting meditating.” All the while there’s a little girl sobbing out the varieties of physical and emotional pain that this disease has brought her.
What are your tips for dealing with raw emotions and chronic illness?