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I had a really bad day yesterday and today is a bit better, but not great. When I have a really bad day, I am in bed because it hurts to sit/stand/walk, I am crying about some existential crisis, and I'm not very good at deciding, remembering, thinking about anything. It is a perfect storm and it happens about once/3-4weeks. I can go days without crying and then it hits. Anything can be the trigger if I am in that vulnerable state...this time it was too much action in a TV show. I don't even have the gumption to read. Everything seems too hard.

I need a saying to calm myself, but not counteract the feelings...just riding them out or something. Any suggestions? Does anyone else have these episodes? How do you explain them to people so that they can really understand that you can't do something that day at all.


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I've now stopped saying I am tired/emotional & instead say I'm not good company which seems to be received better (well I think so anyway).

I do get periods like that but I have to say at 3 years post op they are much fewer & further between. Lack of sleep really doesn't help & as I'm not sleeping well I think I will hit a blip soon!

Hugs Kris (())

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We could always cancel June after how we both felt today j/k.

How about your favourite song when on a downer? a happy one though.

Hope you cheer up soon, as reading your mail made me so happy xx Thanks once again xx

My turn to try and help you xx not that good am I, but cry if you want xx


Win ~ May you feel happier soon xx

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Kris, so sorry you had such a rubbish day. I've had a run of them and feel totally fed up but I have done a virtual grab on my shoulders and looked myself in the eye and said ' this will pass, now rest and refresh and then go on'.

I think I had let myself get super tired again? Had you? I spent most of today in bed sleeping on and off, I haven't done that in ages and my head is thanking me tonight.

As for the crying. I am ultra convinced of the healing powers of tears, we can't suppress our emotions as the neurons just don't seem to have the energy to cope with them, what do ya reckon Kris, have the tears got negative charged ions in them...

Take care Kris. I love the science and insight you bring to our little world but take care.

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Kris, although I do not ever cry, I become painful head to toe, cannot think, or do anything and it last a week more or less. It is often after doing something "fun" or over doing it. I can have them for no reason. I am similar to a sleeping zombie.

I have used the word "stop". I said it when I quit smoking and wanted a cigarette- or "later" and later the feeling passed. I have not word now other than if I have a second of panic - driving in city, almost missing a step ( yep, sometimes I think I do not have to look when my feet are???), or something comes up and I feel a quick panic over come me I just say "STOP". Even use it for senseless worry. Right now I am using it for clenching my teeth.

Mine comes with great fatigue & pain and I have gotten to the point of not knowing where my CFS/ME , fibro, SAH and stroke comes in or not - it is all a big mess of pain and overwhelming tiredness. I can only rest it off and give into it as I think rest is what I need to heal at those times.

I recently started a new supplement approach so I am thinking I will be healed in 4-6 weeks. I will let you know! Yes, I am in a desperate state of trying to get better.

SO I do not have a WORD or anything that may help but this is how I cope with down times. Mine are about 1/2 the time or more. Feeling good is more rare for me than feeling like a zombie.

I try to tell myself food is nutrition and sleep is healing.


Edited by MaryB
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i do not know you as we'll as the others here but the posts I've read you are a very level headed logical person. Emotions tear away at logic and puts us in a very vulnerable place. I cry quite a bit now, to the point of making my head hurt. I have to talk myself from anxiety to calm. I keep quietly saying to myself, "calm down and breathe." I say it over and over again slowly and it seems to help me gather my senses.

It is difficult to know the right words but this, as with all, will pass. Quiet and relax. Calm.


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Hi Kris

hope you're feeling better today. You always have wise words for others -just the right balance of science and spirituality. You have a lot of insight and awareness of your condition and your responses to it and that's great. I can only comment on my own journey and have noted the following. Having always believed in being armed and prepared with knowledge is always the best course of action I did many, many hours of research on SAH, and thinking and drawing conclusions and planning my own recovery plan.

I think it helped in the short term but then somewhere along the line it actually worked against me (I basically did too much thinking) and set up a cycle of stress/anxiety which made all symptoms worse. I had the crying thing in the first few months -it would seem to come out of nowhere and was unstoppable but when I stopped crying I could always look back and see how an extra busy/ stressful period had crept up on me and I reckoned the tears must have been the build up 'overflowing'. Not much use when you're in the middle of a sob session though!

You seem a much more laid back person than me and if anybody is able to 'go with the flow' I reckon it's you so the above is probably not relevant to you! I also found making up analogies useful in giving some sort of narrative to all the randomness that seemed to be happening to me which kinda made me feel a bit less helpless in this mad new world I have found myself in. I'll post them elsewhere in case it may help any others.

All the best


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