29.06.18

Life in our bubble keep off the grass

Summer’s here. Everything’s out. Hot sun, bright flowers, beach bums in shorts’n’ flip flops, the barbecue crowd. Our daughter has been stuck indoors for days now, lying on the sofa with the occasional foray to the bathroom and then back to her room at night. She’s feeling rotten while the world goes on around her, although faintly, at a distance.

We think she has hay fever. She’s coughing and snuffly, eyes a bit puffy. Out come the antihistamines. They make her drowsy. Drowsier I should say. She’s been dozing on and off, doesn’t want to get up. Then she refuses food and drink. We’re used to her pushing away her beaker. But food? Is she feeling sick we wonder. She looks really peaky. Pale and interesting.

A friend comes round to see us. Our girl is unresponsive to her hello. Usually she beams when she sees this woman. “Oh, hay fever,” says our pal. “Have you been on the grass recently? You should keep off the grass…” she opines. “High pollen count and all that. Grass is the biggest offender when it comes to hay fever.”

We’ve had a few picnics in the garden of late. Well you do, don’t you, in the summer. It’s good to get some free vitamin D, feel the heat on your body, soak up the sun’s rays however briefly before enjoying the cool of the shade under a large umbrella. Relaxing in the great outdoors, away from the screens, the inside distractions.

Our daughter is not getting any better. She’s now got a slight temperature. We’ve added paracetamol to the cocktail of meds she takes every day. It’s hard to get them all down her. Her throat is sore, she doesn’t want to swallow. We’ve raised the head of her bed to make her more comfortable at night. We listen out for her breathing when we should be sleeping.

During the day the PAs keep her company while we work. They read her favourite stories interspersed with gentle DVDs and soothing classical music that washes over her. When she snoozes they write up their log notes, add to the growing PRNs on their meds charts, think about activities they could all participate in on a good day. Will that day ever come, we ask ourselves.

Then our daughter’s epilepsy rears its ugly head on top of everything else. It’s not fair. Another thing for her to contend with. The stress of not being wellI, of feeling out of sorts and uncomfortable has got to her.  After a very unsettled period we resort to rescue meds, something we use sparingly. We don’t want her to build up a tolerance to them over time so that they lose their efficacy. But she obviously needs a break, a good sleep. The crisis passes. For the moment at any rate…

Several days later one of the PAs goes off sick. She describes what seems to be some kind of virus.  At least she can tell us how she feels. She says she just wants to bury herself under the duvet and get on with feeling awful. Sick and tired, literally.  Her body aches all over. Her head hurts. Could it be that this virus is what was the matter with our girl all along? What about the hay fever? We suddenly realise how utterly exhausted we are.

Another friend comes to the house. She sits for a while with our daughter who is curled up on the sofa, still listless, but now showing a tiny flicker of interest in her surroundings and in the conversation we are having. “Have you tired earthing?” enquires our guest. “You know, standing barefoot on the grass, being grounded. It works wonders…”

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