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.


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.


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.


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


“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.

Wednesday, May 23, 2007

Today I was up at clinic to have my port flushed and pick up some drugs that have proved a bridge too far for my *ahem* crap *ahem* pharmacist to supply. More about him another time...

This was the third port flush that Brad has been attending as part of his learning process for being able to access my port himself at home. We both feel it would be an advantage for him to be able to do this as it means that if we are on holiday he can flush it and also that we don't have to do a 3-hour round-trip to the hospital every 4 weeks. At first I think he found it difficult to get his head round the idea of pushing a two inch steel needle straight down into his wife's chest. I've assured him it hardly hurts but I think its a strange psychological situation to get used to when you are not medically trained!

This appointment helped him quite a bit because the nurse gave him two ports to feel, hold and play with, along with a port needle. One of them was cut in half down the middle which was really good as it enabled us to both see clearly what is inside a port and how the needle needs to hit the metal back plate of the device when it is inserted. I think he can now envisage what he is dealing with under my skin better.

He still watched again today but I've told him that next time he absolutely has to have a go himself. I expect it won't go right the first time (even the nurse missed at first today because my legendary rhino-skin caused the needle to bend in half!) and I am expecting that he won't have anticipated quite how hard he is going to have to push down on the needle to get it through the skin, muscle and silicon centre of the port, but I'm happy to grin and bear it while he gets his confidence and I'm sure in the long run he will be doing it just fine without even thinking about it!

During the procedure one of my consultants came in and told me some good news. Well it may not sound like good news but it is to me...I am seriously anaemic! Why the positive response to this news? Because it seems that I have been anaemic for quite some time, which is exactly what I had suspected for the last 18 months but which I have never been treated for until now. I've struggled with tiredness for a few years but it has been particularly bad for the last 18 months-2 much so that I have become more dependant on my wheelchair, have had to plan each day with meticulous precision so as to ensure I "spend" my meagre allowance of daily energy wisely (e.g. resting all day if I'm going out for the evening etc) and have been generally feeling so utterly exhausted that I can barely function a lot of the time.

About 18 months ago (when I was at my previous CF centre) I tried and tried to get the doctors to take this exhaustion seriously. Unfortunately I think they had already made their mind up that it was all in my head (my history of depression appeared to hang like a cloud over my notes every time they opened them) and after running various tests they as good as said so. Well they said that since the blood tests were all fine there must be a "psychological element" that was causing it, though when I asked what that was (taking into account that I was no longer depressed) they had no suggestions. Winner.

When I tentatively asked if having a Serum Ferritin level of 12 when the normal level is 15-200 could be an issue, I was told that although it was below normal, I didn't need any treatment for it and it was irrelevant. I tried to suggest that at least a trial of iron supplements might be worthwhile, as a final attempt to find a solution, but again was told this was simply not necessary and that actually iron supplements could lead to susceptibility to pseudomonas. Bad idea, please close the door on your way out.

I moved clinic a few months ago and things have been so different that sometimes I feel like crying with relief after visitng the team at my new hospital. They were determined that they were going to find ways of combatting my chronic breathlessness, exhaustion and constant infections. After running some specialised lung function tests my consultant identified that my smaller airways were functioning very poorly and he put me on a new type of inhaler called Spiriva that is usually used in patients with COPD.

Within about a week I noticed a massive difference in my breathlessness. I went from getting hugely out of breath just having a shower (and then collapsing exhausted on the bed and needing help with dressing) to being able to walk round the shops without my wheelchair and without experiencing any noticeable breathlessness. I could have kissed my consultant! The effect wore off a little with time, but I am still so much less breathless than before that it is amazing.

Next on their list of problems was my constant infections . A week after finishing a course of IV's (with minimal results) I would be back heading downhill again. My lungs were also bleeding more and more regularly. After 6 courses of IV's in one year, the team and I decided that an option other than yet more IV's was needed. They decided to try me on nebulised Tazocin, a powerful antibioitc that I am sensitive to but which is not licensed for use in nebulisers as yet (though has been trialled at one other centre before). The difference this has made to me in the last 8 weeks is phenomenal. I haven't needed any IV's or orals and my chest is better than I can remember it being for the last 2 years!

However the one thing that just didn't seem to shift was the exhaustion, barely altering with variations in my chest symptoms. With hindsight I have had the classic symptoms of anaemia - debilitating exhaustion, breathless, looking very pale, flaky nails, a constantly dry mouth and occasional heart palpitations. My team, determined that they would eventually find the cause of my fatigue went back through my recent blood tests results since becoming their patient. When they asked to do some blood tests two weeks ago, I suspected they might be on to something.

Today it turned out my iron levels are skulking around with a miserable expression on their face at a paltry 7ng/ml (the normal scale is usually taken as 15-200 nl/ml in the UK, although one research report concluded iron deficiency was a likely possibility with results below 50ng/ml)). No wonder my poor body has been throwing major strops for a considerable length of time! They can't work out why the levels are so low but I am now popping my iron tablets with gusto and have high hopes of being powered through the ceiling by tomorrow morning with my new-found energy levels. May be a little optimistic, but at least I feel we are finally starting to work out the conundrum of my complicated little system!

Sunday, May 13, 2007

Introducing Sybil!

Apologies for the lack of blogging over the last couple of weeks. My excuse is that I have been spending my time dressed as a slut, being drunk and loud and copulating with old men. Some excuse hey? Even better, Brad has amused himself during this time by showing his bum to 200 people in our local village…which was nice.

May be I ought to explain…..

Three months ago I joined PVADS (Pewsey Vale Amateur Dramatics Society) and auditioned for their modern comedy “Denim” by Jay Saunders. Originally I was cast in an unspeaking role as a member of a girly-type Birthday party. Meanwhile Brad was cast as…a stripper….which made me laugh hysterically and think “Thank god I got away lightly!” whilst feeling highly smug that I didn’t have to do anything so embarrassing.

However at the second rehearsal the Director came up to me with some interesting news. One of the cast had dropped out and he wanted me to play the part of Sybil. SYBIL???? Oh SH*T!!! That will be the Sybil who has a relatively major part as a drunken nymphomaniac and who has to simulate sex with a pissed old man (played by a 73 year old chap from the village)? NOOOOOOO WAY!!!!!!

I very nearly decided there and then that I had never really wanted to be a thespian and that the role was rather too complex for my liking. But then I stopped myself from turning and running out the door by thinking that this was make or break. I have wanted to act my whole life. As a little girl I spent hours writing little plays in my bedroom and then performing them to my gathered family (not easy when you have to play all the parts by yourself and there can only be one of you onstage I can tell you…)

I remember so clearly the day I was told, at the age of 7, that I had been cast as an angel in the Sunday School Nativity play. I was beside myself and ran out to my Mum afterwards on cloud nine, full of thoughts of wearing a white sheet with tinsel in my hair and angel wings. When my Mum gently reminded me that we would be away for Christmas that year, in the exotic location of the United Arab Emirates (my first ever trip abroad) I absolutely wailed and pleaded with her to cancel the holiday!

At secondary school I had auditioned for the annual musical every single year without fail and never even got a non-speaking part. My school was exceptionally high-achieving and many of the girls there had private singing lessons in the lunch-hour. For some reason they never picked musicals with anything more than a small cast so the only people who ever got to take part were those who were very gifted singers and who, presumably, would make the school look extremely prestigious. Every year I would get so excited when the details went up on the notice board of who had got a part and I’d run up the stairs and stand desperately scanning for any sign of my name – but nothing. The let down was terrible.

When I went to my sixth-form school I joined the drama club and auditioned for the first play that they were putting on. You can imagine my amazement when the teacher became slightly overexcited by my audition and immediately cast me in the leading male role (that’s the trouble with all girls schools!). However this was a bit of a shock to the system after having been turned down for so long and I took one look at the pages and pages of lines I would be expected to learn and panicked.

Fortunately, or unfortunately as the case may be, whilst panicking over how to extricate myself from what seemed an impossible task, I was struck down with an appendix abscess which went undiagnosed until I was so ill that I was rushed to hospital with peritonitis and my parents were taken out of the room to be gently told I might not make it through the night.

Still, it got me out of the play nicely….

So anyway, back to the role of Sybil. I knew that if I turned down this opportunity then I could kiss goodbye to any dreams of acting in the future. I made up my mind there and then that I would overcome my natural inhibitions and play this role as well as I possibly could. Even if it did involve being on centre stage drunkenly singing “Happy Birthday to you, Have a shag cos you need too, shag him twice on the sofa and suck him off till he turns blue!” Seriously! Not to mention being grabbed from behind by an old man and oohing and aaahing as if we were at it. Eeeeek!!!!

Actually within the first few rehearsals I felt so at ease with the wonderful bunch of people there that it really didn’t matter anymore and we all laughed along together. The PVADS members are some of the nicest people ever and are a really fun and genuine bunch. They made me feel so welcome and were very understanding about my CF-limitations. Many of them are smokers but once they understood my problems they all agreed amongst themselves that they would only smoke outside and well away from me during rehearsals which I thought was really sweet since I hadn’t directly approached them about it.

Anyway, after 3 months of rehearsals the play finally opened on Thursday and ran for 3 nights. I’ll write more about it in my next blog entry in a few days time....

Tuesday, May 01, 2007

I can't stop eating.

No really. I've spent my whole life without an appetite but its been particularly bad over the last 6 months. Until now. Until the time that I have a gorgeous dress to fit into for the Breathing Life Awards. Suddenly I've gone from being someone who pushes all her food round her plate before scraping 3/4 of it to the side, to someone who is asking (yes asking!) for treacle pudding and custard after clearing her plate. My husband has been getting more and more stressed over the last few months, vainly trying to tempt me with something to eat or encourage me to drink my (disgusting) Calogen...and now suddenly he's running down the shop to stock up on ever-diminishing packets of crisps and Haribo.

This evening I was actually hungry an hour before dinner and polished off a bag ofHaribo and a raw carrot (a somewhat random mixture), then ate my dinner, then desert and now some savoury snacks. It's like a TV diet show in reverse. Picture the scene...Gillian McKeith stands before a long trestle table, her face a mixture of delight and revelation. She turns to look at me with a glowing smile. "Emma, just look what you ate in the last week!" The table contains a handful of plates with tiny helpings, a few apples and a bag of salad. You are amazing! You've lost half a stone in the last month! I can't wait to catch up with you week, you're a national inspiration....

Cut to the following week. Only this time Gillian has on her familiar scrawny, smacked-arse face and she's looking at me with a mixture of disgust and shame. The table this time is groaning with food. Bags of Haribo are split open everywhere, their contents spilling over into bowls of crisps and pretels. Snickers bars compete for space with sponge puddings and custard, fried chips are lined up side by side. And standing behind it all is me, wide as a house and wobbling about like a jelly.

Well, I may be exagerating just a teeny bit, but I have actually put on half a stone in the last 6 weeks (since going on nebulised Tazocin which has really helped me chest-wise). It's great! It's amazing! No struggles to drink Calogen, no sticking out ribs, no friction between me and Brad about my diminishing weight. BUT WHY NOW??!!!! I NEED TO FIT IN MY DRESS!!! Isn't that just Sod's Law?!! Ah well, I'm not going to stop eating so if worst comes to the worst I'll just have an excuse to go dress-shopping again hehe. Oh and please do tune in to watch the Breathing Life Awards on Five Life, Saturday 2nd May 2007. I'll be the one doing the impression of a space hopper with legs.....

Tuesday, April 24, 2007

Well the lack of blogging on this page is starting to annoy even me now! I'm not sure whether I still have any readers, but I see what happens if I post another entry. I can't believe this is the first post of 2007. I do have some excuse in that during the first week of January my lovely friend Emily was whisked into Harefield Hospital for her long-awaited double lung transplant and at that time I started up a private blog for her that I kept daily for a month. Then our comedy night "Laughter for Life!" took over and there were a few weeks where I was doing the equivalent of working full-time on the preparations. The next few weeks were taken care of with dealing with a bit of a health battle and a bit of burn-out from the comedy night. Which brings us to now..... Ta-Da!!!!!

Anyway, I will try to be a better blogger over the coming months, even if it is short entries. I know there is nothing worse that continually clicking on a blog and finding the same out-of-date entry! I will also try to keep entries shorter as it will be less difficult to keep going (hopefully!). Sadly I can't promise the kind of laugh-a-minute blogging antics of Jayne or Jac, nor the amusing and perceptive delights of Emily so I won't even try but as long as out of a choice between watching paint dry and reading my blog, the latter wins in 90% of cases, then I'll be satisfied!

The other day I was standing in a charity shop examining the jewellery display under the counter. There was a rather large man standing next beside me facing directly towards me, as he chatted to his friend who was serving. As I bent down to look in the glass counter, I noticed the conversation fall silent and felt I was being watched. I suddeny became conscious that I might be providing a rather revealing view of my cleavage, seeing as I was wearing a faily low-cut top. As I straightened up the fat chap decided to speak.

"Cor that was lucky then" he joked, "I thought the top was going to come right off!"

Somewhat stunned by the impudence of this outlandishly rude statement my brain started whirring as to quite how to respond. Should I go all out and slap him (as seen in all the best soap operas)? Should I look around at all the other customers and humiliate him over what he had just dared to say to me? Why was his friend behind the counter just standing there calmly looking back at me? How dare they?!

"When you bent over I thought it was all going to come out!" laughed the fat man.

WELL! I was incensed by this point but also slightly bewildered. I'd never encountered anyone being so blatantly offensive and lecherous, seemingly without a shadow of embaressment or discomfort. The heat was now rising into my cheeks and I was genuinely contemplating the slap approach. Come to think of it, what was my husband doing just standing there looking at me? Why wasn't he jumping to my defence and laying this despicable little man flat out on his back? He should be prtecting my honour, grabbing the man by the scruff of the neck and telling him if he ever made lewd suggestions like that to his wife again, he would not forget it. How dare they all just stand there smiling? How dare they? How.......

But despite my look of incandessant rage and indignation I was lost for words and just glared at him in a scary way before stalking out the shop seething with anger.

"Didn't you just hear what he said Brad?!! What a bloody cheek! And you, just standing there watching and now saying anything. I had a good mind to....."

"He was talking about the water bottle"

"The WHAT???"

"He was talking about the water bottle you were holding in your hand. He was worried the top might come off it when you tipped it upside down as you looked down at the counter".

Oh. Right. Ahem.

Thank god I didn't slap him......

Thursday, December 28, 2006

Wow! Christmas has been and gone for another year and doesn't it disappear quickly compared to all the weeks of build-up?!

We had a lovely Christmas Day (at my parents) and Boxing Day (with Brad's family). I was on IV's this Christmas and was pretty knackered out for most of it, but we managed to adapt the festivities to suit my gnat-sized energy levels and as long as you can adapt things I don't think it really affects the enjoyment of anything. I'm finding these days that even things like sitting up at the table for a long meal is too exhausting, so I had a nap on the sofa after finishing my main course and returned for Xmas pudding (or as Brad described it "that round thing that comes after the turkey"...) Actually I always used to get bored during the "polite after dinner chatting" anyway, so I reckon it works quite well this way! Then I had another rest on the sofa whilst we opened presents, followed by a rest in bed and then Christmas cake woo hoo!

The following day we went up to Brad's family for the traditional "Boxing Day lunch" of cold turkey, gammon, mashed potatoes, pickles, etc followed by trifle. I have finally accepted that I socialise best in a horizontal position ( Oi! You with the mucky know who you are...) so happily chatted away and opened more presents snuggled under a blanket on the sofa, which worked well because it meant I was able to enjoy more of the day without feeling exhausted.

I got some lovely presents and feel like a very spoilt girly. Pink particularly seemed to dominate a great deal of my presents this the infouence of a certain Miss Thackray there?! I had pink pyjamas, two pink jumpers, a pink top and some seriously groovy pink stripy socks. One of the jumpers is pink and candy stripes so with my stripy socks I now look like a very happy pink mint humbug!

Today I went to clinic for my "after week 1 of IV's" check-up (must think of a catchier name than that...) and guess what?!! My lung function has reached the dizzy heights of 1.8 litres (48%)!!!! I don't think it has been that level for many years so clearly having become chronically infected with a weird bug is doing wonders for the old lungs WOO HOO!! In fact this time last year it was static at around 39% I think, so I guess that despite the hassle, 14 weeks of IV's this year has done some good YAY!

In my typically odd style, I am actually feeling pretty pants despite this great improvement and am more breathless and generally wiped out these days than I have been in a long while. I do find it frustrating though that no one seems to be able to work out why I am steadily becoming able to do smaller and smaller amounts of anything that vaguely requires any energy, and yet my lung function is doing so well. What's the point of having all that space in my lungs when I have the stamina of a flea? Still, the main thing is that whatever is going on it doesn't appear to be damaging my lungs so thats definitely something to be pleased about and thankful for. And after all, I simply wouldn't be me if anything about me made sense hehe!

After clinic I decided to see what all the fuss was about the sales this year, and we braved Swindon town centre with me safely installed in Fraggle (the wheelchair). I must say I didn't really see that much to get excited about and we seemed to end up coming home with about 15 toilet rolls, 4 kitchen rolls and 3 boxes of tissues all from "99p Land" festive! (and no we don't have a paper-product obsession really.....)

I also discovered a new mathematical equation: wheelchair + people madly intent on a post-Xmas shopping bargain = madness and mayhem. Brad doesn't do patience when he is pushing me...after all, he's spent the last few years walking at a snails pace round the shops and having to stop and look interested every 5 seconds to answer questions like "does this go better with that or would you say that needs some shoes like this to work?" so when he can welly it he is going to, crowds of dawdling shoppers or not. This produces a particularly interesting spectacle in shops that insist on ignoring the needs of wheelchair users and pack the aisles full of hanging clothes and debris. Result? Brad's sweeps past leaving a trail of destruction in our path as I desperately apologise to the latest person whose ankles he has broken.

As we crashed our way round the town I considered what a mad idea Xmas shopping sales are anyway. On 24th December people are rushing around buying all sorts of stuff and getting totally stressed out before collapsing in a heap with hundreds of bags and queuing for 2 hours to get out of the car park. Then two days later they all suddenly want to do the exact same thing again, only this time they have to queue for 4 hours, fight their way through rails of mis-sized crap, sustain serious head injurys from flying elbows every 5 seconds and see everything they bought 2 days beforehand at half price.

Now I really must pop into that big Next tomorrow to see if they have those trousers reduced.....