I used to get quite irritable when I was tired. Now I am tired almost all of the time.
But I find the swelling and explosion of irritability is not 24/7. In fact when it rises from my guts and crashes through my body I takes me by surprise. I’m clench fisted, tight mouthed, spluttering, holding my breath and wondering what on earth is going on. It doesn’t seem to have a reason – or does it?
I awoke today feeling cruddy after 4 or 5 days of feeling quite reasonable (relatively speaking). A disturbed nights sleep, pain and discomfort with a brain muddling grogginess from my new medication (that’s for another blog when I know more from within this skin) left me waking with all of those feelings, unrefreshed and with great sadness that improvement was interupted or just transient (yet again).
Even so, I rallied myself as I had tickets for an outdoor matinee Shakespeare perfromance this afternoon (starring my brother) accompanied by my husband and mom. And I enjoyed the show – yes I did! Beautiful setting, great production, laughs a plenty, family pride. Yet a background hum of exhaustion, tiredness, weariness, pain and woolly head.
Home for tea and biscuits and nattering mother. Lovely to see her. But I reaches a point when all I could hear in my head was “please take her home, please take her home”. I am not mean spirited believe me, I am just exhausted. Not so exhausted that I can’t blog though you might rightly say? Well no – but the ever present physical apsects of this illness, of a long day, of a bad day, is so distracting, so loud, so nagging. And an extra voice, a wanting of attention – I can’t handle it and I feel so sad at not being able to give. And I feel so terribly guilty and ashamed that I am not able to say to people “I need you to go now / shush now / leave now” in a way that doesn’t make them feel snubbed.
So I am left alone, quiet house, only the thump of CFS in my mind and I swell with frustration and irritability and explode in tears and self pity. Why?
I wonder now if it is over stimulation. Stimulating things from one minute of this afternoon:
sunlight, breeze, warmth, flies, smell of straw, seeing person/person/person/person/child/person, sound of chatter (many conversations at the same time – many too close and too loud), sloping forward of my wheelchair, lights in trees, mud, pain in glands, fuzzy head, pain in arms, pain in neck, music, people moving behind me
All in the space of one minute. It’s a lot for a person who sits at home alone a lot and doesn’t even play music because it’s a capture of all attention.
I know I am going on and not making alot of sense and usually I would do this in private, in my journal. And be assured this will pass (probably and hopefully quickly) but it’s the explosion of frsutration from nowhere – that must have a grounding in many obvious things that I need to pour out to make sense of. To have a hope of tackling it. Because when my husband gets home he won’t understand tears and banging fists and clenched teeth and nasty words and lashing out when we’ve had such a lovely sunny outing with smiles. I feeling like a toddler with a tantrum unable to articulate the why and the seed. He wanting to help but feeling lost – as lost as I am. Both waiting for it to pass and putting it down to being tired. Tired.
Some of it is me – has always been me. But CFS fuels the fire and it’s unpredictable nowdays (but to be fair not frequent either). I’m wanting to be intellectual about it – but stuck in the fist clenching phase is perhaps not the right time to unpick it.
Off to stomp about (mentally though as I don;t have the energy to stomp or thump).