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?
5 thoughts on “Severe Uncertainty: planning and ME”
I have great empathy for you! It’s very hard living constantly with all the limitations, and sometimes I think it’s completely natural to need to let all of this out every now and again. We’re not saints and we wouldn’t be human if we could stay positive all of the time!
I do inner child work to help me. I visualise big Sarah being there for the little girl Sarah screaming and sobbing. She listens to all she needs to let out and validates whatever she is feeling. “It’s perfectly natural to feel like this. Of course you feel like this. I love and accept you just as you are.” Big Sarah holds her safely. After as many sessions as this as I need, I begin the re education. Maybe, “you don’t need to feel scared about the future as I’m here with you.” Or “it’s ok that we can’t plan for the future.”or “it’s ok to make plans, then change them. It doesn’t mean you’re letting people down.” Often it links in with a childhood belief that I need to explain to little Sarah was mum or Dad’s belief. It doesn’t have to be true for her.
All of this I have learned from my therapist Sarah Davies, who has written a very easily accessible book about it. It’s called “Mummy’s little helper” and available on Amazon.
Hope you get through your emotional time soon.
Love Sarah x
Hi Sarah. I’ve also sent you a personal message on the forum, but I just wanted to say that I tried this techhnìque last night when I was starting to get upset again and it helped. I can best describe it as the little girl dissolving into an upset adult. Before there was the dichotomy of distraught girl and sensible adult, but changing to just the upset adult removed the dissonance/conflict and was better because the upset adult had more resources to hold things in perspective, recognising that any sane person would be upset or anxious in these circumstances.
[BTW we don’t have Dissociative Identity Disorder – if anyone thinks this all sounds insane, its more metaphorical than the way you’re reading it.]
Also, I’ve been thinking about the two way relationship between emotions and physical health. I recently started taking kefir yoghurt and think I may have increased it too quickly. I’ve been hearing about neurotransmitters (control mental health) and the gut microbiome. I wonder if kefir could cause enough ddisruption in the gut to be mood altering? I’ve also been feeling more virally , and actual viruses tend to make me feel really low emotionlly just before I get them.
Of course I also have enough problems in my conscious experience to be legitimtely anxious and upset.
Tips for ME 
I have great empathy for you! It’s very hard living constantly with all the limitations, and sometimes I think it’s completely natural to need to let all of this out every now and again. We’re not saints and we wouldn’t be human if we could stay positive all of the time!
I do inner child work to help me. I visualise big Sarah being there for the little girl Sarah screaming and sobbing. She listens to all she needs to let out and validates whatever she is feeling. “It’s perfectly natural to feel like this. Of course you feel like this. I love and accept you just as you are.” Big Sarah holds her safely. After as many sessions as this as I need, I begin the re education. Maybe, “you don’t need to feel scared about the future as I’m here with you.” Or “it’s ok that we can’t plan for the future.”or “it’s ok to make plans, then change them. It doesn’t mean you’re letting people down.” Often it links in with a childhood belief that I need to explain to little Sarah was mum or Dad’s belief. It doesn’t have to be true for her.
All of this I have learned from my therapist Sarah Davies, who has written a very easily accessible book about it. It’s called “Mummy’s little helper” and available on Amazon.
Hope you get through your emotional time soon.
Love Sarah x
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Hi Sarah. I’ve also sent you a personal message on the forum, but I just wanted to say that I tried this techhnìque last night when I was starting to get upset again and it helped. I can best describe it as the little girl dissolving into an upset adult. Before there was the dichotomy of distraught girl and sensible adult, but changing to just the upset adult removed the dissonance/conflict and was better because the upset adult had more resources to hold things in perspective, recognising that any sane person would be upset or anxious in these circumstances.
[BTW we don’t have Dissociative Identity Disorder – if anyone thinks this all sounds insane, its more metaphorical than the way you’re reading it.]
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Glad that my ideas helped you to develop something that worked for you! I’ve just had a lovely week’s holiday and even been floating in the sea twice!
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Also, I’ve been thinking about the two way relationship between emotions and physical health. I recently started taking kefir yoghurt and think I may have increased it too quickly. I’ve been hearing about neurotransmitters (control mental health) and the gut microbiome. I wonder if kefir could cause enough ddisruption in the gut to be mood altering? I’ve also been feeling more virally , and actual viruses tend to make me feel really low emotionlly just before I get them.
Of course I also have enough problems in my conscious experience to be legitimtely anxious and upset.
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