An uncomfortable realisation

In many ways I'm writing this post for myself rather than anyone else to read. It's an aide memoire to self about how ill I can be.

What I find in this M.E. world is that in the midst of all the symptoms and the coping and the strategies for managing I get myself into a 'nice' little routine where
I do and don't do things,
commit and don't commit to things,
think and don't think things,
expect and don't expect things,
hope and don't hope things
in order to survive and carry on and try to keep up with The Rest.

These various activities and inactivities eventually become second nature. Everything is measured carefully ----
time,
energy, food intake,
food stuffs,
vitamins,
medicines,
noise levels,
light levels,
chemicals,
smells,
cleaning materials,
and on and on
and this regimen is repeated day in and day out until this precarious and 'safe' little routine becomes second nature.

I limit myself without thinking so that,
eventually,
I do not even notice
sometimes
that everyone else is rushing past
whist I creep along.

In this way I keep some kind of grip on a reasonably tolerable existence and I am able to be quite bright and amenable with myself and those around me
and less of a burden.

And then sometimes circumstances dictate that I am shaken out of my cradle.

The bow breaks.

No longer can I maintain my fledgling bird existence, safe in my little feathered nest.
I have to fly with the big birds and keep on flapping my wings lest I fall to the ground.

This weekend past was such a fall from the nest.

Partner was feeling the need to fly the nest for reasons of recreation and change of scenery and, after discussion, it was agreed that a brief sojourn with two friends from Friday afternoon until Sunday afternoon might be manageable for me whilst I stayed behind and cared for our two children on my own.

My children are lovely, bright, and...well children with normal expectations and social lives and by Saturday evening I was on my knees. Many symptoms that have only shown a passing interest lately decided pay a Grande Visite and I have been shocked at how bad I can feel when I try to fly too high and too long.

From time to time I am tempted to apply for DLA. Indeed I did apply about 2 years ago but was turned down. In order to come to terms with the horror of completing the form (which entails a full deconstruction of all the things you cannot do, the places you cannot visit, the ambitions which are dead ends and hence leaves you feeling like the washed up husk you are and there fore thoroughly miserable) I thought that the failure of my application was due evidence of my lack of need.

After all, I manage don't I ?
After all, I am still able to be there for other people, aren't I ?
After all I can still manage to rustle up the odd cake when I feel up to it can't I ?.....even though I cannot cook a full meal from scratch without feeling like death by the time it is ready and time to eat it (the form asks you if you are able to complete such a task).

I can wash and dress myself now....even tie my own shoe laces and I can drive the car.
BUT... who knows about how I only have a bath every few days because every day is too tiring and standingin the shower makes me feel giddy and vulnerable
and who knows there are days when I just bung on any clothes (sometimes over pyjamas) in order to feel and looked 'dressed'
and who knows that quite often when I drive the car 2 miles to town, because I have to go there, that I sometimes, whilst driving, think
'You shouldn't be doing this....you're not really in a fit state'

Me thinks there has been enough ducking and diving, weaving and self-deception and the next time I apply for DLA or have to ask for help, I should remember this past weekend and bear in mind that I need to measure my abilities' --- such as they are -- against other people who are well and fit and not against my own skewed reasons for trying to pretend I am more able than I am ------ damn and blast it ! I've been found out again .....by myself.