Wednesday, 12 March 2008

Little Things

It's the little things which get me down I think. Drip, drip, drip; it's wearing.

Our surgery has a telephone prescriptions service. This is actually helpful; it means I don't have to get down to the surgery to order repeats, I can just phone them in. Except the phones are only answered at set hours of the day, and it isn't possible to leave a message. Drip. The hours have recently been reduced from by an hour each day. Drip. And there are times when I phone close to the closing time, and discover they have closed early. Drip. This happened last Monday. It had also happened on the Friday before. Drip. And I needed to have phoned on the Thursday, but forgot. Drip and a mental slapping. Mog's milk supply was running low; it's a special formula, and needs to be ordered in; I try to do this with at least 10 days' supply left. So, on Monday, I found a little box on the surgery website inviting me to email my prescription requests. And at 4.30 on the Monday, I did just that. OK, request in on the Monday, reviewed by the doctor on Tuesday and sent to the chemist, should be delivered to us on the Thursday or Friday. The whole delivery thing is a plus point, an anti-drip if you will. Problem solved.

Except that on Thursday I had an email informing me that I had not used the correct format to request repeat prescriptions. Medications should apparently be listed in ALL CAPITALS with doses following, and only the medications on one particular part of the patient files may be ordered in this manner. Thursday. One week after I needed to have ordered them, four whole days after I thought they were arriving. Drip drip drip drip dripdripdripdrip gush. I phoned the surgery, I emailed the surgery, they, thankfully, managed to sort it out, order some of the milk on an emergency basis for delivery on Friday, and order the other medications to be delivered at the start of this week. Breathe again.

Breathe again, that is, until I realise that my carer has tidied the last bag of nappies into Mog's nappy box. It's our super-efficient carer, so she has thrown out the bag, rather than leaving it for me to trip over to let me know she has opened it. That's ok, she has enough nappies for this week, and the next month's delivery is waiting at the surgery. Where we live, the PCT will not deliver nappies. Drip. Come what may, these must be collected. Drip. A month's supply of incontinence pads for Mog cannot be carried on public transport, cannot be carried by one person. Drip. There is no dedicated parking spot near the surgery. Drip. My wheelchair accessible van does not fit into the multistorey carpark beside the surgery. Drip drip drip. So I have the choice of parking illegally in the spot reserved for workmen, inconsiderately in the spot reserved for doctors, or in the one disabled spot a mere 50 yards away. Drip. Oh - or of blocking access to a garage for 2 minutes, but the owner of one of the garages was extremely upset with me for doing that a while back, and I'm scared to do it again. Drip drip drip. Using the disabled parking space means I need to have one of the girls with me. Having one of the girls with me means I cannot carry all the pads in one go - either I leave the girls in the van, and rush in and out for the boxes of pads, or I bring the girls into the surgery with me, in which case I will spend the next 20 minutes shuffling wheelchairs and kicking boxes of pads across the pavement between the surgery and the van. Drip drip drip. Now that I have Little Fish, she also objects to just going to the surgery. If she's in her power chair, she likes to take out the leaflet display with her footplates. If she's in her manual chair she can't haul herself up the ramp to the entrance, so sits plaintively wailing until either I push her myself (generally turning around to find Mog disappearing back down that same ramp and crashing into a pillar at the bottom), or leave her at the bottom as I grab the boxes of pads. Drip.

That was however the only tricky bit of the operation. I used to be able to phone up and leave a message one day (even at midnight, this line does have an answerphone), and the pads would be put into the foyer for me to pick up at some point the following day. But a few months ago, that changed. Drip. Someone's supply of incontinence pads was stolen from the foyer. Drip (quite literally, for that particular individual!). So now a new rule is in place, pads will be put into a particular room in the surgery, and we can collect them from there. However, this room is the room used for all the baby clinics. So it is now only possible to collect pads on three days a week, and only at certain times of day. Drip. Mog's nearly out of her nappies. Drip. School is out of her nappies (which is why they helpfully removed the supply we'd put in her bag yesterday). Drip. Squelch. Drip. I phoned today, and I can't collect them until Friday. Mog does at present just barely squeeze into size six Pampers, although they aren't the best option and don't keep her as dry as the Tena pads she usually uses. So running out is inconvenient, but not totally disastrous. At least, not until she grows some more. Drip.

Friday. Not just Friday, but Friday between 9 and 11 AM. I'll have to be able to manage it; we certainly don't have enough pads left to last the weekend, and if she's in the Pampers I'll need to change her every couple of hours. Oh, and I really don't want to be collecting bags of pads on Monday morning before we all go our separate ways. Drip. Evil thought; I could use up our remaining pads this weekend, then send her to Helen House with the Pampers. She has 1:1 there, what's the problem? But I won't; I shall resist the urge. However, Friday at 9 is also when the wheelchair rep is coming with the Otto Bock Minny to try, and when the physio is coming to give her opinion, and when (allegedly) Bob may be returning bearing bills and a new back gate. Bring on the clones. Meanwhile, another drip.

Two relatively simple (on paper) needs. Medications and incontinence supplies. Both needlessly complicated by policy and the decisions of others. As well as my own lack of organisation; I'm well aware of the fact the perfect parent would have some marvellous system of reordering things, and be able to stick to it; I have nothing but admiration (and a little envy and sense of awe and wonder) about parents who do manage that, but it isn't my life. Drip. If we lived ten miles from here, our pads would be delivered to our doorstep. For free. And then I'd probably be complaining about missed deliveries - there's always some kind of stress.

But two small minor things to factor into our week, both adding to the little drip drip drips. Mog's breathing is another bigger drip factor - it isn't normal to be breathing like that, not all the time, day and night. She used to breathe like that for days on end, but it improved. Now it's worse again. Drip. Whilst I'm excited about getting a few nights to sleep, I'm worried about leaving the girls too - drip drip DRIP. Another little driplet; the central heating repair needs to be fitted into the diary at some point. Mog is starting Rainbows (YAY! And only nine months late), but the timing of the meeting means I now need to reorganise her evening care package. Drip. Mog's feed now runs so slowly I am often up late waiting for it to finish. Drip. And Little Fish has started waking earlier with the lighter mornings. Drip.

That's the drips, the little frictions, the tiny constant irritations which gently rub arthritis into my soul. Three days off will be my balm, if getting there doesn't finish me off.

Then there are the other little things. The nice little things. A kind note from a friend, a supportive message from a stranger in the street (temporary fame is a strange thing), a big bag of outgrown clothes just right for Little Fish, and in excellent condition. Some of them can't have been worn more than once. Beautiful little pinafore dresses, tshirts, cardigans, everything a girl could wish for. My laundry pile has grown as instead of recycling it I am adding new things every day (ok that might be a drip, but a worth it drip). Good news about friends' children, a keyworker at preschool touched by the burgeoning friendship between Little Fish and Little Preschoolers, the friendship itself and the welcome afforded to Little Fish from children and other parents alike.

The Little Things happening all over at this time of year; the daffodils and pansies and crocus and tulips coming into flower in the garden, and the nesting birds (do not ask me what kind; they've got two feet and wings and they make noises. They shed feathers. They're birds), and a visit from our old cat Henry.

It's been a very weird week. Stressy things happening make our normal stresses more stressful. But mixed in with that are little nice things too; I hope I can concentrate on them for a while.

Pray for Jophie. He's out of surgery, but not out of the woods.


Tina said...

Just as disorganised at ordering and collecting, although our paking is not so bad as you describe it is not ideal. Have you considered getting the pads collected and delivered by taxi? no idea how far you are from the clinic but it could be worth it!

Pots look good,

Robyn said...

gosh, i was stressed reading that. but i have to say YEAH at rainbows!!! and your plants look beautiful...i have whatever those yellow ones are called, envy! :)
hope you sort out the nappies

Doorless said...

OOH Spring. We are still melting ice and snow. It has been in the 40's f this week.
The drips can errode of you let them. It must be so hard. I am spoiled here. Everything gets delivered including incontinence supplies.
Love the flowers.

Anonymous said...

HI, never posted on a blog before! Have you thought of videoing the breathing, or getting school to do it if she is doing it there as well? I once sent a cd of my son's seizure activity to his neurologist to prove to him it was not a form of reflux! Also do you know anyone that works in the surgery or near the surgery that can pick the nappies up for you?

Take care

Tia said...

Hi, and congratulations on your first comment on a blog (Be careful; it's addictive. I started out as just a commenter and now look)!

Yes, I've got it on video a couple of times (including rather handily now on national TV!) so hopefully I'll be able to get someone to listen properly. The problem I find is that I pass it to the GP who passes us to the Paed, who refers us to respiratory team who say it is neurological, neuro says it's respiratory or possibly ENT, and round and round we go. Oh, and of course she never does it when there's someone watching her who would be useful.

And Robyn the yellow ones - Daffodils?!

Anonymous said...

Can sympathise on the meds having just spent the last 30 minutes getting M's labels changed from 'as directed' to the actual dosage so the hospice will accept them (don't know why the chemist decided to change them as they were labelled correctly last time I looked!) Then had to reorder all the meds, not cos we were running out but so I could get some meds to go with the new labels!!

This was after having to get the letter re J's meds redone in case some jobsworth at the airport next week decides we can't board because the letter says orlept and the bottle says epilim - ie same thing just different brands.

But at least our nappies are delivered to the door so can't complain on that score (although J can as they are no longer delivered in cardboard boxes for him to play with!


Anonymous said...

whoops - computer glitch!! sorry!

Tia said...

all fixed Val!


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