Monday, August 27, 2007

Oooh get me! A second post in 3 days! I'm actually suprised anyone still reads this thing. It does my head in when people only update their blogs twice a year and you keep clicking on it and the same old story comes up. It's like buying a daily newspaper for 3 months and finding the same news everytime.

I have just read my friend Jac's blog, which I have to say is one of my favourites as it always makes me wet myself laughing. She was talking about the dangerous combination of wheelchairs and husbands. A phenomenon that I know a little about seeing that I am in possesion of both.

There are two reasons why I only use my wheelchair when I really have to. The first is logical -I want to be getting as much exercise as possible (or rather as much exercise as one can get dawdling round the shops and stopping for regular tea and cookies) and so only keep it in the car for when I am really struggling.

The second reason is...well....I don't find it the most relaxing of experiences. Now my husband is many things - loving, kind, generous, supportive and amazingly good-looking (he's reading this I know....) BUT even he has just a couple of weaknesses (yes you do have darling....)

The first of these weaknesses could be described as a lack of spatial awareness and cooridnation. Or in politically correct terms "unique coordination".

I however call a spade a spade - he's clumsy.

The second weakness could be described as a lack of studied effort to achieve goals. Or in politically correct terms "time poor".

In other words - slapdash, which the dictionary describes as "in a bold, careless manner; at random."

Which most defintiely describes Brad's wheelchair-pushing technique.

The result of the irrepresible combination of clumsiness and slapdashness (or 'time poor unique coordination') is certainly interesting where wheelchair manouevring is concerned. Now normally when we go shopping (or even when we're not going shopping) Brad has to walk at the kind of pace normally reserved for those creatures that carry a house on their backs at the same time. On top of this, he also has to put up with constant stops as a I 'ooh' and 'aaah 'about anything sparkly or pretty. So it's really no wonder that as I sit down in the wheelchair I can sense as deep sigh of relief as the vision of an open road with no speed limit passes in front of Brad's eyes.

Which would be fine if the road was actually open. Which in a shopping centre or tourist attraction it seldom is. This small fact does not however hold Brad back. No, he has the wind in his hair and his eye on the far horizon. As we set off I can hear the faint sounds of "Born to Be Wild" playing in his head.

Doorways tend to rather ruin the momentum, as we crash through them with me almost flying out the seat. Shop displays present a similar problem as we career through Debenhams with me wearing half the stock on my head, leaving a trail of fallen naked shop dummies in our wake. But most serious of all is the dangerous combination of Brad+wheelchair+pedestrians+ankles. As I'm swept along, we leave a trail of people hopping on one foot clutching their ankles and uttering profuse apologies to us.

That's the funny thing about being in a wheelchair. The normal rules of society go out the window and in their place are put the "Polite Rules for Encountering Wheelchair Users". These are the unwritten rules that NWU's (non wheelchair users) must use when in close proximity to WCU's (wheelchair users).

1. In cases of close encounters with WCU's (e.g. when entering a lift together), a NWU must make exagerated smiling signals and become overtly friendly, chatty and helpful in order to show how open-minded and disabled-happy they are.

2. In cases where WCU and NWU's are not encountering each other closely (e.g. when sitting at seperate tables in a cafe or passing in the street), the NWU must make overt "I'm-not-looking-at-you" signals in order to demonstrate that they are so used to disabled people that they hadn't even registered the presence of a wheelchair (N.B: Exception to this rule is when the WCU is not looking).

3. If a WCU careers into the ankles of a NWU, the polite response is NOT "Oi! You F*cking idiot, watch where you're going, you've just taken all the skin off my ankle and it HURTS!" Instead you must simply stifle a gasp, limit the hopping, keep smiling and say "Oh I am SO sorry!" until WCU is out of sight, at which point you may then examine your wound and call an ambulance if appropriate.

This latter rule is taught to small children as soon as they can toddle. It ranks so high up on the scale that it is equivalent to the "no loud farting in public" rule. The difference is that not only must children of NWU's be taught to smile and apologise when they are mown down, but a new addition comes into play where small children are involved. This rule states:

"Where a WCU damages the child of a NWU, not only must parent and child apologise, smile and ignore the stream of blood coursing down the child's leg, but in addition the parent must commence extra-loud berating of small child for the incident"

Yesterday we went round a visitor centre of a stately home. I was in the wheelchair. It was rather dull which only added to the average speed Brad was notching up, as we really only wanted to visit the tea shop (but felt obliged to make some pretence of being cultured). We crashed our way through the true-life-scene-of-Tudor-kitchens, knocking a small milkmaid over as we passed by and leaving me with her mopcap on my head. We bashed our way through several doorways, removing the 15th century fresco in the process.

We decided to watch the film of the house in the little cinema even though it was already 5 minutes into the showing and crashed spectacularly through the doors into the darkness, with everyone turning to look (before realising the WCU rules stated them must only smile benignly at our interruption). 3 minutes after watching Henry VIII fly a kestrel in a field whilst talking to Ann Parr I got bored. But becuase of being a WCU I was allowed to break the rule of having to sit and behave and we went crashing back out the doors again.

We were so relieved to reach the tea-shop and stuff our faces with cream teas that at this point Brad careered into the ankles of an 8-year old girl. She had already learnt the rules. She held together her severed limb, gritted her teeth into a smile, apolgised profusely and was led away by a mother shouting at her "Sarah you MUST learn to look where you are going!"

The system works.

EDIT: On looking up "clumsiness" on Google I have found the solution to it. So dear husband, if you are reading this, here is what you must do...

"Animals are another image that helps people become less clumsy. "What is the most graceful animal that you can think of? A cheetah? An eagle?" Dr. Gersten asks. "Imagine yourself as that animal. Feel yourself as that animal. Feel how every muscle in your body works together. Feel the wind in your face as you run or soar through the air in perfect balance with yourself and with nature."

BORN TO BE WI-I-I-I-L-D.......................

Saturday, August 25, 2007

I have absolutely had it with anything to do with veins. Yes it’s that good old time again- IV’s. Or rather not IV’s. Because IV’s require access. And I haven’t got it.

As a result of having a very rubbish chest at the moment, I went up to clinic yesterday to start IV’s. Unfortunately the only appointment they had was at 9.30am which meant leaving the house at 8am. Now anyone who knows me will be aware that me and mornings do NOT mix. In fact I have an extremely poor relationship with anything that involves being alert before 11am. Anyway, having decided that I needed IV’s, they got the port needle in without any problems and after a few hours of administering drugs and collecting four huge carrier bags of drugs and a massive yellow sharps bin, I was on my way…just in time for my brain to begin waking up and saying “Have I missed something?”

Now at this point I should update those who are not familiar with what a port is and in particular, the unique personality of my own one. A port is a small metal device that is buried under the skin on the left side of my chest. It is put in during an operation (which I had in January) and is plumbed into the main vein leading to my heart. Because I have had so many courses of IV’s and blood tests in my life, my veins are pretty much useless and won’t allow any access. However with a port there is easy access to the bloodstream as all that needs to be done is to insert a special gripper needle into it and hey presto, unlimited access! At least that’s the theory…

Mine never read the instruction manual. It never learnt to read full stop. My port is as much use as a chocolate fireguard because it keeps spitting the needle out. Where a needle is meant to stay in position for 2 weeks at a time and be very difficult to remove from the device, mine gets itchy feet within a few hours and decides that holding needles in place is too much like hard work – so gives up. During my last course of IV’s I had about 4 needle changes in the first week, after which my port still didn’t feel it was getting enough attention so decided to get infected for a change. My port was then named Emily. For those of you who know Emily this will make perfect sense. Naughty, attention-seeking, and with a tendency to stamp its feet in protest. I’m talking about my port of course…..

So may be it shouldn’t have surprised me that at 3 am this morning I woke up with an agonising pain that felt like I was being prodded with a red hot poker in my chest. Yes that’s right. Emily had decided that she couldn’t sleep so I should wake up and entertain her. Since I hadn’t done this she had gone all pouty and spat the needle out. Getting up at 3am to remove a port needle and dressing is not my idea of fun. Getting back to sleep after was less so.
I refused to get up early to work out what to do with Emily and slept until 11am, before re-evaluating the situation. As far as I could see, there was no point in spending an entire afternoon driving to Bristol and back to get another needle put in, as more than likely it would be spat back out by the following day. That left two options – either going to my nearest A&E for a venflon or finding out if the local Minor Injuries Unit could insert one. As CF patients are meant to avoid A&E as much as possible due to infection risks (although I guess an exception can be made if one’s leg is hanging off or similar) I decided to try the latter option and rang them up.

Hurrah! It appeared that it would indeed be possible to get the local MIU to put one in for me and even better – it was only a sunny 15 minute drive away. Feeling very pleased with myself we turned up there at 1.30pm and were told the doctor was out on calls but would be back within the hour.

Unfortunately when said doctor arrived I realised that she was in fact one of the GP’s from my village practise….the very worst GP in the history of the Universe. Dr S is middle-aged, miserable and moody. She has the personality of a wet fish and is permanently grumpy. Funnily enough, although the 3 other doctors at the practise have 2-week waiting lists, you can get an appointment with Dr S on the same day, probably within 5 minutes. That’s how good she is. This was going to be great fun….

I was called in by the nurse and walked down the corridor of doom to meet Dr S, who looked me up and down with a scowl.

“I don’t really understand what this is all about but you’d better come in” she mumbled. Good start.

I sat down and explained the whole situation. That I simply needed a venflon inserting until I could see the CF team again on Tuesday to dicuss my port. That I’ve had venflons put in at A&E before when my lines have failed over a weekend, but that my team preferred us not to go into A&E’s if possible due to infection risks.

“Hurrumph” said Dr S with another scowl “Can’t see why, there is no difference between going there and coming here”. Which would have been a sensible retort if it wasn’t for the fact that the MIU is constantly deserted, except for the occasional old lady wandering in – probably for a bit of conversation – and pointed out to Dr S that in comparison to sitting for 4 hours in a very busy A&E this option was much more preferable.

“Sounds ridiculous to me” she snapped. Oh good, this was going well.

Next she told me she didn’t think anyone should have a venflon in for a whole 3 days. Which is intriguing as she’s the first doctor who has ever stated that this was a problem. I managed to convince her that since in the past I had often had them for a week at a time, I doubted it would be an issue.

Then the fun started. Dr S begrudgingly mumbled that she would “give it one try” and brought the sister back in to assist whilst I laid down on the couch. She poked around at my veins, making very doubtful noises and frequent mentions of “scarring” and “it’s going to be difficult” which is always encouraging to the patient I find. May be I should have realised why at this point the sister pointed out that I could “always come back at 6pm when Dr G is on who does this sort of thing regularly”…it was obviously more than a subtle hint, but I didn’t pick up on it and agreed to one try by Dr S.

Next Dr S took out the venflon and tossed it on the bed. I think this was the point I started to realise that her hygiene procedures might not be that good. I had been waiting for her to wash her hands (after all she’d just walked in after spending the last couple of hours on the road) but when she started to unsheath the needle I realised that she had no intention of doing so. With visions of septicaemia flashing before my eyes, I took a deep breath and was impressed to hear myself saying “Would you mind washing your hands first please?”

I think I offended her. She gave a rather indignant snort but couldn’t really argue with it, so shrugged and said “If you want”. She then headed to a nearby sink where upon the sister pointed out to her it was the wrong sink and that she should use the one on the other side of the room with the disinfectant soap. As she was washing her hands the nurse caught my eye and winked and nodded approvingly at me, clearly impressed I had spoken up for myself.

When she returned she picked up the venflon and started peering at it. I think it was at this point that I realised she probably hadn’t seen one for about 3 decades as she wasn’t even sure how it worked. Apparently they had been “all different” when she had last used one and she couldn’t even work out how to put it in. With a lot of guidance from the nurse she decided to go for it. At this point I realised she was about to insert probably the biggest venflon sharp I have ever seen and with my confidence in her abilities was at an all time low, I was on the verge of grabbing my bag and legging it out the door.

It was too late though so I just gritted my teeth and gave her the benefit of my overwhelming doubt. This may have proven foolhardy however because her first attempt backfired when she couldn’t even get it through my skin. She held the weapon up triumphantly (gleaming in the sunshine) and announced “Hmmm, I think this one is blunt” before going in for a second attempt with it.

Now I’m very good with needles and with needle-associated pain. After years of being stabbed repeatedly and having junior doctors doing a botched job of inserting lines into my veins, I’ve developed an ability to mentally detach my arms and let them do their worst. However nothing had prepared me for an attempt by Dr S…

Firstly she missed the vein spectacularly. Secondly she failed to realise this. Thirdly she decided that if she kept pushing as hard as possible into my arm with it, it might just strike gold. I’m surprised the bloody thing didn’t appear out the other side of my wrist.

AAARRRRGGGGGGGHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now most doctors realise when they have missed a vein and retract the sharp immediately, along with profuse apologies. Not Doctor S. She was hanging on with a grim determination, leaning her entire 15 stone bodyweight onto the needle, for some reason apparently believing that my veins were located somewhere near the floor.

My brain quickly registered that she had no intention of finishing her mission and that only I could stop her.

“PLEASE COULD YOU TAKE IT OUT! OUT! TAKE IT OUT! NOW!”

It took a couple of seconds to register but finally she twigged. Oh. Hurting. No vein. Take out needle.

The nurse was by now nearly as terrified as me having witnessed Dr S’s attempts to skewer me to the bed and rapidly grabbed my arm and started pressing on it.

“Hmmm I don’t think I got the vein” Dr S announced.

GIVE THAT WOMAN A PRIZE!!!!

“Don’t worry about the bleeding” she went on “it’s not from your artery”

YOU DON’T SAY?! IT’S NOT FROM ANYTHING RESEMBLING A BLOOD SUPPLY LOVE BECAUSE YOU NEVER GOT NEAR ONE!

“I’ll give it another go when it stops bleeding” announced Dr S.

You what?

I cleared my throat and said, in only a slightly wavering voice, “Errrr how about I come back later when Dr G is here?” in as nonchalant a manner as I could manage. The nurse was standing behind the doctor with a panicked look in her eye and started madly nodding at me and winking. Clearly she was dreading another attempt as much as I was.

“Oh well, OK” said Dr S grumpily as I fled out the door.

At 6.15pm Dr G inserted the venflon in 3 seconds, with barely a flicker of pain. He was clearly a pro and a very nice, friendly one at that. He also appeared to know quite a bit about CF and was very chatty. He checked it flushed ok and sent me off with a smile. What a difference.

It was perfect. Well apart from one thing. I’ve just tried to give my evening dose of drugs. And nothing – NOTHING – can be injected into the venflon. It doesn’t work. It’s packed up before I’ve even used it. I give up.