A Surprisingly Useful Keycase

The cold weather adds an extra level of disability to some of ‘those’ people; I include myself in this category. How I wonder will I fair (or should that be fare?) under the new 7 tier class system; having recently been accused as having a ‘hard to swallow’ middle class bias to my missives? It is of course a relative often self assessed judgement; and what exactly does this mean in 2013? Perhaps the new system including apparently ones friends/acquaintances; does this include those who one once knew, those who did not survived my recent updating cull on my mobile contacts I wonder?

This morning going swimming at 650 am the ambient temperature according to the car was – 0.5 degrees Celsius; by 750 am it had risen to 2.5 degrees. What I wonder was the temperature of the air around the pool particularly that in the changing rooms where we shiver (and in my case shake) wet as we ferret in our bags for shower stuff. It feels bloody freezing is all I can say! And my fingers work even less effectively when cold as well as dead; the eye sight test fails convincingly today (i.e. the things I can do without looking scores a shocking poor number under these circumstances). As I attempted to unlock the front door whilst peering at the bulbs in the pots I realise that one of the reasons the door doesn’t respond to my in effect ‘stabbing or rather poking the key hole’ is because I’m using the car key!

Of late I have realised, rather disturbingly, how bloody marvellous the leather key case my mother bought me on line (amusingly in the belief that it was a small coin purse; an item that would have bemused me in its utter uselessness at least to me). Actually the two chains are really quite helpful; one for the car key and one for the two house keys) – and then there’s the little zip pocket for the supermarket trolley; a universally used £1 plus a euro in Morrisons! And until recently I didn’t know no coins are needed for Sainsburys presumable these customers aren’t inclined to steal trolleys; curious judgement, perhaps the new class system can shed light on this propensity?

Back to the front door. I had thought I was using the door key because I had assumed I had unzipped the zip to release the door key; no I had pressed the button on the car key fob releasing the silver bit that goes in the ignition. Hmm this level of manual insensitivity is new; perhaps this is today’s new symptom of the day, I am currently recording them for my own sanity as the raft of medical practitioners currently interfering in my life take a contrary point of view. Why does the phrase ‘no sense, no reason’ come floating across my internal sight line? Certainly no body pauses to consider the impact of their ‘suggestions’ on my quality of life; ok I accept these ‘suggestions’ are probably both well meaning and well thought out but they have in common one thing, they are without exception made without me.

After the week I had last week I have never quite felt both like the subject of a challenging medical conundrum necessitating a team approach and like an awkward patient! The look on one person face when I put in my twopennieth reminded me of when I say something my now 5 year old Godson doesn’t want to hear. You know the one where the lip starts to twich and eye contact is repeatedly engaged and disengaged as the head goes up and down with , in his case, the fingers on his little fists fiddle with nothing in particular! Yes adult males do this too; in this case the thought running through his well informed brain full of facts is no doubt ‘there goes my chance of catching up the late (only 15 minutes today)start to the Clinic’. This is probably competing with nuggets of information from the most recent medical publications no doubt a number of them authored by the Thinker (his posture slumps resembling the Henry Moore sculpture; curiously he does have the Nordic blonde hair, blue eyes, marble complexion).

Call me unreasonable but my currently precarious mobility is important; I used a wheelchair on holiday and it was disturbing quite how quickly reliant I became on it. The last day after it went back to the Medical Centre I found myself repeatedly looking for it; apologies to the close friend who lent me a sarong in case it did get snagged in the wheel spokes! Like my insistence on ‘upholstering’ the ‘perching’ stools in my bathroom,/kitchen I did attempt to disguise the metal carriage; universally failing on account of needing to leave most of the frame free to actually function!

So safe to say my mobility is getting rapidly worse so when the Thinker suggested that a remedy to one of my more challenging side effects was to use the Stimulator 24/7 on a low level. Excitedly he told me that this had proven successful for a number of patients. Point of information to give the ‘implanted device’ its full name the Spinal Cord Stimulator basically stimulates the nerves via targeted wire attached to the spinal cord; in my case targeted at my left leg. Currently my stimulator is turned off as it makes the pain worse rather than better; the best analogue is listening to music/radio at an acceptable volume so its comfortably in the background and suddenly the volume increases to an ear-splitting and painful level. Basically not nice and certainly not what I would call pain control!

Let me remind you why I am reluctant to try this suggestion. Please don’t be offended, I’m wouldn’t intentionally offend you by accusing you of being forgetful but blog posting isn’t exactly imparting information requiring use of ones memory capacity after all it’s not usually worth remembering! No it’s more in the casual perhaps mildly amusing category! Now having cleared that one up back to ‘business’. In October I went to the Stimulator Clinic which the (my) stimulator was tested (remember the bit where I said it made me fall over, Nurse said best you stand up then, I stand up, testing person whacks the stimulator up to is max (as I am standing up)and funnily enough I fall over – but hey no problem prepared nurse is standing next to me so puts her two hands out to catch me! OOH didn’t we all laugh as only 3 girls can in a secretive conspiratorial fashion – with at least one of making a mental note not to do this again in case the patient being tested isn’t as tolerant.

At the end of the October Clinic it took me twice as long to walk or rather shuffle painfully (in both senses) back to my car. The deterioration in my ability to walk was immediate and permanent; it never came back providing a higher base level on which the incremental deterioration has continued to built. This I told the Thinker THREE times; each time he repeated ‘it’s worth a try before we look at surgical options’ or variations of this. Finally he agreed to get his specialist nurses to talk to me about the surgical options; but still included using the stimulator in what he said was a reasonable way forward. This appointment was at the end of a week of appointments and treatment; it had begun with a mammoth session at the Dental Hospital when one filling turned into four taking an hour and a half (during which 2 other patients had to be reallocated to other Dentists – I did feel rather guilty as is my wont.

I was frankly exhausted worn down by a week of medical intervention that made the situation worse (in my opinion) so when asked by the Thinker if this was a reasonable solution I said yes. My swift assessment of the situation was that this was the only way to bring the unhelpful conversation to a conclusion. Of course I do have the ultimate upper hand; I have absolutely no intention of using the stimulator to the extent I am considering not taking the control to the follow-up appointment in May. But then this would make me an awkward patient now wouldn’t it; oh hang on I can see the beginning of that circular locomotive that is the Multidisciplinary Team that ‘manages’ my condition and unsurprisingly the passengers are all engaged with their individual mobile devices in other words no one is talking to each other! The driver, my GP, is talking to me as if I’m an intelligent sentient being; fortunately we are being left to own devises to really get down to brass tacks, knowing together by listening to each other and keeping our ears to the ground we find out things of use!

 

 

Being Bionic

I’m betting Wonderwoman never had the problems I’ve had over the last couple of days; and if she did there was probably a Bond inspired M equivalent on hand to pick up the pieces. Why am I comparing myself to Wonderwoman I hear you ask? Have I to sporting electric blue lyrca hot-pants with matching vest (not forgetting coordinating cuff with oh so special powers denoted with a gold star)? Oh and do you recall the darling headband and knee-length boots with a practical heel?

No the small children of Barry have not been exhibiting behaviour so terrible that they need quite so extreme a punishment; although 4-year-old Godson has narrowly avoided a yellow card when he bit an older child! I confess to being more than a little shocked to hear that children at his school receive yellow cards for bad behaviour and if they get 3 yellow cards they are excluded! You have to wonder if IDS has had some input into such disciplinary measures all in the cause of catching deviant behaviour early or has someone been watching too much football perhaps.

Godson is 4 years old and has been in full-time school for less than 4 weeks – surely there are other ways of handling such misdemeanours? It makes me want to scoop him up and run away with him whilst metaphorically making a wax effigy of the evil queen who calls herself his teacher! Instead I shall stick to reading him stories on a Saturday afternoon – now we have graduated from Aliens Love Underpants the pleasure of repeated story telling has returned! As he attends Welsh school this will be his only exposure to the English language as apparently he won’t learn to read in English until he is 7.

Anyway back to Wonderwoman or more accurately Bionic Woman; the Spinster is a bionic woman – seriously I am! About 5-6 years ago I had a spinal cord stimulator fitted as an addition to my pain management armoury. It’s like an internal TENS machine activated by a rather chunky remote control which is not the easiest item to incorporate into ones outfit! Do I look like the kind of woman who’d embrace faux leather? In the early days I did approach a designer whose handbags feature (significantly) in my wardrobe to come up with a more stylish solution but sadly this sophisticated foray came to nought.

The manufacturer of the stimulator equipment is indeed called Bionics and I have the Precision model inserted into the top of my right buttock. Yes I have an implanted device which must be declared in airports specifically to the security personnel. I had always understood I could no longer go through the scanner arch business. (Nor can I be cremated without it being removed either). I say had because on Friday (at the Clinic) I was informed that such precautions were not necessary! The advice is apparently to cover the manufacturer in terms of insurance claims. So the Welsh Government security guys no longer need to shout ‘Woman with implanted device coming through’ when I next go for a meeting! I kid you not this actually happened; with absolutely NO evidence of humour or irony.

Last week in preparation for my appointment at the Stimulator Clinic I made sure the implanted device was charged and ready for servicing. In spite of being told by the Consultant Surgeon (before he agreed to proceed with the operation), that the procedure was very expensive – I seem to recall the figure of £25,000 being mentioned – I have only been to the Clinic once at my own request. A curious way to manage investment but hey that’s the NHS for you; such paltry sums as metaphorical pin money. Since the operation I have lost weight and the device is no longer 2 cm below the skin; it’s 5 mm at most. Should an unsuspecting pickpocket ‘caress’ my back pocket in search for not so buried treasure they might have quite a surprise! Teach people to touch what they don’t own!

When I say weight loss what I really mean is redistribution; whilst the quantum is smaller overall the reduction is not exactly statistically significant. The general impact of gravity seems to have shimmied the flesh in a southerly direction exposing the implanted device on account of my having inherited my father’s flat backside. The impact of this is that it doesn’t charge properly; I have been advised to pad the battery to con it into ‘thinking’ its mate inside is deeper than it really is. This is the magic bit – I charge the ‘grey welsh cake’, otherwise known as the battery, in the same way as any other rechargeable battery. Then I place it in the very attractive nylon net pouch on the Velcro belt (see above). The battery has to be placed exactly over the implanted device otherwise it bleeps to tell you contact has been lost – if I tell you it takes anywhere from 2 to 8 hours to charge you can imagine the problem.

The location is between my waist and my hips i.e. the most difficult place to stay in situ. Initially the hospital supplied industrial strength sticking plasters so you could literally stick the battery in place; these were most convenient if eye wateringly painful to remove. But hey now I’m a threading regular (facial hair removal) I’d happily cope with the skin tearing sensation! But the hospital doesn’t provide plasters (on account of the cost presumably) and as they can only be purchased from Bionics who seem not to supply the actually users I’m reliant on ‘the belt’. A pair of close-fitting knickers is the solution – preferably the lyrca flesh sucking variety that restrict the blood supply – the resulting numbness that would alarm a regular citizen funnily enough doesn’t bother me!

Whilst charging myself this time something happened that has only ever happened once before; I couldn’t turn myself off. In the days when I used the stimulator regularly I always had 3 AAA batteries to hand for the remote control but that was sometime ago. About a month after I’d had the equipment installed I turned it on as I got on a train after a day’s training in the North East. As I got up to go to the loo I went to turn myself off on account of the impact on my balance – remaining erect on a moving train is a challenge at the best of times and I wasn’t exactly up for ending up prostrate over the lap of the adjacent passengers! The remote control flashed error message and then died; without turning the stimulator off. I confess I did have a little wobble and text various members of my family asking them to contact the clinic – the time was 6 pm. To make things even more relaxing the train was stuck behind another train with engine problems! By the time my wonderful father met me on the platform of Chesterfield Station I had been stimulated for almost five hours! Father had a box of batteries from his shed and we huddled over the contents until we found suitable AAA ones to put in the remote control. Thankfully this was the problem and finally I could turn the bloody thing off – exhausted and very much shaken not stirred!  Last week the same scenario presented itself only I no longer have crates of AAA batteries in the house so I had to steel myself and drive to Tesco with the stimulator still on!