I’ve suffered all my life with intermittent and tricky to explain (so I don’t bother explaining) not-quite-right-ness:
Strange pains and feeling like my blood is pooling in my legs when standing.
Sharp stomach pains and exhaustion.
Sporadic aching somewhere, somehow and not knowing why.
Reactions to foods, and then no reaction to the same food another time.
Feeling ill when sitting too long.
Restless legs and trouble getting comfortable or sitting still.
Wide awake when I should be tired.
Floored by exhaustion when I should be energetic.
A strange feeling – with inner ear sound effects – that at the back of my head the top of my spine is made of popping candy and if I look up I will pass out.
Fuzzy, whooshy ears.
An inability to hold my arms in the air for too long when hanging out washing.
Bashing into things.
Tripping over my own feet
Trouble with balance and co-ordination.
Vertigo without heights.
But all this fluctuates and there is also:
Great physical strength.
Muscles which on certain days can power up the steepest of hills.
A tremendous sense of balance, and an ability to hold substantially awkward yoga positions.
A stretchy and flexible body.
The posture of a dancer or a horse rider.
When I am well I am very, very well. I can fit a lot into one day.
I can garden like a machine
I can cycle after months of not cycling and have power in my muscles.
I can walk for miles with ease.
I can run up and down stairs several times in one day and wash and dry many loads of washing, change beds, clean the kitchen, vacuum, carry heavy shopping.
I don’t feel weak or tired or over-exerted. I just feel well, and plan energetically for several days ahead based on this current exuberance.
And then a bad day follows the good days and my head feels 2 pounds heavier, like it’s putting strain on my neck. My eyeballs ache. Everything I’m supposed to do feels like a monumental climb with heavy legs and brain fog. My memory is poor, and I’m not even clear what my intentions are. My thoughts don’t flow. My energy is gone. And I’m floored again, ditching my plans, needing to lie down and yet not wanting to lie down. Weak, shaking, losing hours. Hands trembling. Frightened of food. Wondering who the idiot was who made so many plans for me that I can’t possibly carry out… Aching. Uncomfortable. Not quite right. Totally frustrated by an unpredictable body.
I’ve always been like this. Completely unable to plan anything long term and unable to know what I will be capable of. Nothing specific, nothing serious, nothing long-term enough to see a doctor (apart from the exhaustion but that lead nowhere). And I’ve mostly been fairly quiet about it. Until now. I’m starting to read more and more about how autism and Asperger’s can co-occur with hypermobility problems, connective tissue disorders and Ehlers Danlos Syndrome. It’s early days for me only a little over 2 years into my diagnosis, and I still struggle to find enough information about the physical effects of my condition.
But I can believe myself now – about my not-quite-right-ness. It’s still a bit of a mystery but it’s a very real one.