The VegEPA really do help, when I'm on them and I crash (as I did in class on friday last week.. Most embarrassing and more than a tad worrying since not 30 minutes earlier I'd been alone on public transport) I'm peripherally aware of what's going on around me, yes I'm embarrassed because of it and yes I cry, but at least I can make myself understood (eventually) and I can get help and the crash also ends much sooner.
If I've run out of VegEPA or like the last few days forget/ don't take them - when I crash it's much more serious. Yes, my limbs don't work, they're too heavy and I can't move - but there the similarities between a VegEPA crash and a non-VegEPA crash end.
It's like I'm on high dose painkillers and I'm cushioned from everything - ok so I can't move, I'm uncomfortable - but I don't care. I'm completely detached from everything - I could be dying or lying naked for the world to see and it wouldn't matter, I'm not really aware of anything around me, or if I am I just couldn't care less because I'm locked in some kind of immovable armour that's shielding me from the world at large.
I think that's why the non-VegEPA crash lasts longer, when I'm aware I have an incentive to come out of it. It's quite a strange one really, if I fight it it lasts longer and exacerbates all my other symptoms but at the same time if I don't fight it or even seem aware that I could, then I don't come out of it for a good hour or two - and even when I do I'm not 'with it' for the rest of the day.
That doesn't make sense does it..? ok, in a slightly more understandable format:
With VegEpa
Sudden wash of exhaustion, enough warning to sit/ lie down and tell someone what's happening before everything is too heavy to move. I'm aware of my surroundings and able to speak though it's slurred and hard to understand. I'm aware of discomfort and uncomfortable positions, if I don't fight it I'm out for an average of 20 minutes. When it's over I feel shaky and a little unwell but I can at least interact 'normally' with people again.
Without VegEPA
Exhaustion comes on suddenly, no warning. I'm completely detached from everything I can't move and I don't care. No matter what position I fall into I'm 'happy' to stay that way, it's like I'm cushioned from the knowledge of pain and discomfort - I know it's there but I can't be bothered to do anything about it. I can only communicate in grunts which means only my carer (stef) can understand me. It takes a minimum of an hour to regain movement and even then it's only enough energy to move into a more comfortable position, I'm usually out for a minimum of 2-3 hours though it can last the entire day as it comes and goes.
When it's over I'm uncommunicative and remain slightly detached from everything, I can move but everything irritates me and I don't want to be bothered with anything.
I've tried doing without the supplements before but I've never bothered to record the results, just the knowledge that I'm better with the pills without remembering why was enough - now though I feel the need for the record, I don't want to attempt this experiment again, with college I've too much at stake, I need to be aware and functioning. While it's kind of 'nice' to let everything go and feel completely detached from the world now and again that's not how I want to live my life - I had that fog for a year or so when I first started dealing with CFS/ME and it confused the hell out of me, I was upset and in pain all the time and I REALLY don't want to go back there.
1 comment:
so sorry indeed to hear what a state you found yourself in - hardly surprising though, given what you were attempting to achieve at the time! Moving house is physicaly draining for anyone and way up there on the stress ratings along with divorce and bereavement. The fact that part of the time you were doing it alone, the seemingly infinite amount of stuff to pack up plus the emotional upheaval of the move, all were bound to be overwhelming.
Be kind to yourself now, do yourself a favour, be your body's best friend and give yourself a beautiful, guilt-free break! Until you get this pacing gig going sucessfully you're going to crash and boom indefinitely. ME will make you crash from time to time anyway, without any apparent explanation,but there's no need for you to virtually invite crashes to the party!!!
lots of love and understanding,
Lynne
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