That this is where I’ll wind up, because of legs or lungs, is looking increasingly inevitable, so I’ve just bought a load more nightwear for hospital – thank whatever gods there might be for Matalan – M&S would have bankrupted me!
As there’s no-one to keep me resupplied with clean clothes I have to take enough for two months (based on my previous 6-week incarceration – tip: Wet wipes go a long way towards keeping PJ bottoms serviceable.)
I know the hospital can supply PJs, but I need PJs with shorts because of my Lymphoedema – my legs might leak all over PJ trousers. And in my experience the trousers never have the correct size waist – either hopelessly loose or painfully tight. On the plus side, if they send you home in them, they don’t want them back.
I’ve worked out a way to carry a loaded holdall on my manual wheelchair without it affecting me overmuch. The chair will take most of the burden; there’ll be some weight on my feet, but I can deal with that as long as it’s soft, so careful packing needed. The bag is a 65-litre Gelert Expedition duffel – more than big enough for two months worth of kit, and it’s secured to the chair with a pair if 120cm climbers’ slings. My chair is a Quickie Life folder, yours might need shorter or longer slings. Length is shortened simply by knotting the sling and, as you can see, they will cross in front of me so they don’t obstruct the wheels
All pics – click to view full size, Back button to return.
This is what the bag looks like unscrunched! It comes with rucksack-style shoulder straps, which I’ve removed.
On the seat back is a netbook bag, which is the perfect size to fit between the uprights, plus a small spotting scope holder which is now pressed into service to carry a folding walking stick. That’s secured with a bootlace. The netbook bags sling is fastened to the mini push handles with cable ties, any sharp edges left after trimming the ties can be carefully melted smooth with a lighter flame. Should you be an idiot, and set fire to your chair, that’s entirely your problem. Just so we’re clear 😉
The bag will take back-up meds to compensate for the staggering laxity in drug delivery at APH, and if they don’t like it they can go screw themselves. I also have some drugs which I need to have at my fingertips, not waste hours trying to find a doctor in the middle of the night to authorise them. It’ll also hold anything else that has to be with me at all times, like valuables, money, and electronics.
Somehow, over the years, my Serevent and Becloforte (now Clenil Modulite), have been diminished by my fucking GP, who never tires of interfering with my meds, from two puffs 4 times a day, to twice a day. OK, I almost never go for the full hit, which leaves me scope for when I need to, so those inhalers stay in my possession. There will also be analgesics and Phyllocontin, neither of which have been reliably supplied in the past.
Finally, on the seat back, I have a Hydrant drinking system. This is just a 1-litre bottle, with a handle that secures it to the seat back (or the head of a bed), and a hose with a bite-valve which enables the occupant to drink from it (I’ll be changing the bite valve for a Camelbak Ergo Hydrolock – I hate bite valves!). This is essential, as once we’ve exhausted the bedside jug of water we’re expected to refill it ourselves** – impossible with a manual wheelchair – not enough hands! Refilling the bottle, though, is easy.
This is the Hydrolock. Just push the yellow button and suck.
**We could try to summon a member of the nursing staff to refill the water, but based on how long they take to respond to the call button – the record is over 2 hours! – that could be an exercise in futility. The best way is to snag them where they’re there doing something else, with a “When you’ve done that can I have…” intervention, before they vanish again.
You know, the old open ward was much better than the bay system, as staff could take in the whole ward at a glance and see what was needed, and the call buttons were linked to the individual beds, not just the entire bay as now.
Bear in mind that if you take diuretics, you can get seriously dehydrated. It sounds counter-intuitive, but you need to drink more than you pee to stay safely hydrated, and the Hydrant comes with a useful colour chart for checking your pee against – I, apparently, am seriously dehydrated right now.
That’s a natural reaction to diuretics, as the more you drink the more you pee and, if you’re in hospital, it can get wearing trekking to the toilet every half hour or so as, inevitably, there are too few toilets for the number of patients. Even at home, repeated peeing is a strain on bad days, and I’ve been known to use the “potty” from my bedroom commode (which, as it turned out, I don’t otherwise need), in the living-room, to avoid the 6-yard expedition to the bathroom every 20-30 minutes!
Back to packing, though, and in addition to PJs, a dressing gown, a supply of Bovril, toiletries (including Anusol cream, Savlon, and steroid cream as those little annoyances that plague me at home will be going into hospital with me, especially stress-induced eczema, for which the steroid cream is invaluable!), two Kindles, a tablet computer (torn between my Fire HD and iPad 3 at the moment, with the latter having the better battery life but the former being more discreet), and a smartphone are in there too, plus a Petzl head torch for after lights-out, as I don’t normally get to sleep until about 02.00. That’s also why one of my Kindles is the new Paperwhite, though if that doesn’t come in time I have my original Paperwhite, and my old K3 for daytime use as it has excellent battery life which the Paperwhites, because of their built-in light – which is excellent by the way – don’t have.
I was also thinking of taking a 2-litre bottle of Vimto but, if I’m in a long time it’ll be quickly used up, so not much point.
And that, unless anything else occurs to me, is that.
Update: Forgot to include links for the various bits – here they are:-
You can also get the slings from Field & Trek – use the Hydrolock link to go there. Ditto for the carabiners I used to attach the slings to the bag and conveniently forgot to mention.