Ahem...

I've tried to update a few times in the last couple of weeks but never really had anything different to say, even after giving myself a slap. However *slaps* come in lots of different shapes and guises and they can say the same things you have said to yourself hundreds of times, but in a different way, thereby convincing you that you haven't really lost it and need carting off.

Some very valued friends who have more than enough on their own plates have been absolute gems and for that I'll be eternally grateful, others have stuck with me even though I've been the most booooooring company....bless y'all. However, the email I received the day before yesterday from Richard(Softie) really did make an impact, so much so that I wanted to put part of it on my blog, its made me smiley again and that's worth blogging about.

"I can imagine that your body has been running on high-octane stress hormones and adrenalin for years, and all of a sudden, as things improve and start to look really hopeful those hormones are drying up and you are going cold turkey, and the diesel fuel of day-to-day Get up, Wash, Cook is a poor substitute. So your blood pressure has come down, your muscles gone all limp, and nothing you do in a day is life-savingly important any more.

Imagine a wall, which had started to sag and bulge. That's Chris' health. It needed a lot of work to shore it up, and as things got worse so the timbers needed to keep it from falling got heavier and heavier. And you were those baulks of timber! And now the wall has been jerked upright by a miracle, and all those heavy baulks of timber have nothing to lean against and have fallen flat! That's how you might be feeling right now. And they are HEAVY timbers, it's going to take a while to pick them up and prop them upright on their own. And they will always tend to lean towards the wall for no good reason, just out of habit, and in danger of falling flat again any time there is nothing to prop up"

It makes a lot of sense, I rather like the bit about the hormones because its physical and I can deal with physical much easier than mental. So....enough's enough, I know why it happened and it has to go, pronto.

Thanks to all who understood and helped, it was a weird few weeks and I'm well on me way back to smiley suz now....Happy New Year to one and all.

Note to me..posted 31st Dec.

I think I need a *slap*

What's my problem?
I'll tell you what it is, I have nothing in particular to stress over at the moment so I'm considering adopting a child or two, preferably one's that are hard work. Why? when I should be the happiest person in the world have I suddenly become a miz, I don't want to tour the country, I don't want to laugh and joke and would you believe it....I'm not hungry.

I've been made redundant from my position as carer which is brilliant as it means Chris is on top form but I'm floundering a bit, not too sure what to do next, I think they call it a transition period, whatever its called I don't think much of it and will be glad when I move into definite next stage and get back to smiley suz. I remember reading on the cf forum some time back about a person who'd had a transplant and things went slightly pear shaped with their mum afterwards, unfortunately I cant find the thread because of the forum crash. Things are fine as regards my relationship with Chris but we don't seem to be doing much laughing in this house at the moment and its me not them. I even found myself saying to the lads this morning, I know I'm a bit of a pain in the arse at the moment but its temporary....honest. Naturally being lads they simply looked at me with raised eyebrows and stayed silent, probably the best move really.

I wasn't going to blog this episode but now I have its freed my mind off a bit and I'm going for a drive accompanied by very loud music, usually does the trick. Oh yeah and that kitten from hell that adopted us I am beginning to understand why somebody might have wanted to lose it. I love it to bits but she's dead naughty.

Mams and Dads

I've been spending some time making paper chains at my mums, arranged by our Chris without my knowledge, because he says I should see my mum more and do stuff with her. Him and Mike love their nan and think my sister, brother and I were so lucky to have her for a mum, I think thats great, but it was slightly different having her for a mum than it is for them being her grandchildren. I remember being chased down the road and getting clipped round the ear all the way back, then up the stairs and into my room where I remained without any tea..regularly.

I cant imagine what my parents reaction would be if when they were driving me somewhere I gave them a dead leg because we passed a tractor and they gave me one when we passed a gas van, one of Chris's made up games where I definitley come off worse because we live in a little village that has at least three farms. Neither do I think I'd have got away with singing "she's tall she's thin she's ugly as sin, its me mum, its me mum" or todays version "she's big she's fat, she wears a stupid hat etc..... I regularly get the lid of a yoghurt or straw from calshake shake wiped on my arm if I'm not quick enough to get away and yesterday I lost a sprout fight hands down.

Anyway, the subject of my blog today seems to be around families or rather parents, my dad was a fantastic person and its a shame my lads never got to spend more time with him, it would have been his birthday today so Happy Birthday Dad, Chris reckons if you'd stuck around longer he would have well beat you in the big fish stakes.

Ha ha ha I'm having a mare of a day

I remember saying in a previous post, if the all the best laid plans have to change..so what.
Now I have to practice what I preach and smile or hum loudly as my plans mess up, its hard, but up to now I'm winning...just.

As I had today completley to myself the plan was to spend some quality time with my sister, starting with a bite to eat then a wander round the shops, maybe make a start on some christmas shopping , as to date I haven't even purchased a christmas card, let alone any pressy's. However, sometime in the night our front door decided to rattle and bang, I heard one of the boy's getting up to see to it so went back to sleep confident they would sort it out. This morning I got up at the ridiculous hour of 5-30 to run John to work so that I could have our car for the fab day I had planned and what greeted me at the front door but a massive barracade, there was a big old tv, four boxes of ensure plus ,the old physio bed, a suitcase and numerous other boxes. Obviously these were meant to keep the door shut, but it wasn't and the wind and rain were howling through the hall, it was freezing.
While trying to secure the door I nearly de-capitated the adopted kitten, dressed and dashed to local supermarket before Chris went out for the day and caused no end of chaos at the till because the price on the shelf was different to the till, I was that desparate to get away I said I'd pay full price but no she was having non of it and called the manager, twenty minutes I was at that till for.

Cutting it short, I'm going nowhere today as window man can't come to fix the door until in the morning, just hope its early as I have an appt that I've been trying to get to since early August. I'm going in the attic now, to get the christmas tree down if I dont log on in the next couple of days will someone tell my family where I went. Thank you.

Apologies for lots of swearing in last blog, not very lady-like I'm told...

Quick Blog

This sat nav thing has come up a few times this last week and so far I've resisted the temptation to buy one, its been mentioned very un-subtley that I might like one for christmas as I tour the country a fair bit and purposefully get lost. I'm not totally against these gadgets but they sort of take the challenge out of getting somewhere you've never been before and they're so monotone. I've heard them and usually feel like saying "shut it you", why dont they give a loud round of applause when you get to your destination or say 'well done you'.
Imagine if they made them in a dominatrix style TURN F*****G RIGHT YOU STUPID B*****D OR YOU'VE HAD IT, now that would appeal to me, I'd buy one tomorrow. Even the subserviant....Erm, I think it might be a right at the next roundabout, If I'm wrong I'll clean your shoes for a week and you can smash me to bits, be a bit more interesting wouldn't it.

Chris went to clinic today, they are extremely pleased with his progress, his lung function is now nearly 80%, the doc said he could knock two more pills off the list and the peg can come out in Feb providing the weight gain continues, his appointments have gone to monthly instead of fortnightly and he jogged on the treadmill for the first time. How brilliant is that. One of the most amazing things for me to see is his total enthusiasm for life, he gets up with a grin and go's to bed with major plans for tomorrow....priceless.

I wrote this last night but it wouldn't publish, so just telling myself its the 6th, not the 5th.

Ferry cross the Mersey.lalala...lalalala

Today's constitutional was to a place where I grew up, but haven't visited for many moons, its a tiny little village that sits beside the Mersey River. On a clear day, you can see Liverpool, that wonderful City with the brill footy team and people who strike up conversation with you as though they've known you all their lives. Its also somewhere that prods one into reflection. Your fault Livvy....you started this reflection thingy.

As I gazed out beyond the waves it all came back to me....

I was 16, just started my first job, it was nerve wracking having to get up at 6 to start the looooong journey to The Liver Building, 7th floor, French West African Company (it rolls off my tongue like it was yesterday) After a bus, train and boat journey I arrived at the office, 'the post girl' was my grand title and I felt dead important. On the first day a lad got sacked for sitting on a desk and not having his tie on, the second day, the Managing Director of the company flew in from Lagos followed by his 5 wives, he scowled at everyone as he swept through the offices and I hated him on site. The only good thing about working for that place was the dinner breaks, we used to sneak off to a seedy club owned by the manager of the personnel dept, he was French..Mr Marteau he was called and his club was fab. I ended up telling my boss who had hairs on her chin and eye's like p**s holes in snow to stick her job up her a**e after being told I'd be sacked if I used the company cellotape to stick my letter down again.

Ahhhh. the good old days....not.

It was my turn to wear the stooooopid hat today, carefully selected from the junk stored in the box room, and how BIG does my right hand look...massive.

Mike's been to the GP, she didn't do any lung function tests just listened to the story so far and faxed a referral to Chris's cf consultant. He'd been convinced she'd laugh him out of the surgery at the suggestion he might have cf, but instead she proceeded to give him advice on how he may have 'mosaic cf ' (never heard of this) and started to tell him about fertility. He said he wasn't having any kids anyway and could he have a script for some spot cream, as he had a few on his face. We've talked a bit about the ifs and buts and Mike is obviously worried as he's seen just about every aspect of cf, I'm still convinced he hasn't got it and I hope I'm right.

Fingers crossed

My eldest son (Mike 26yrs old) started a new job about 3 weeks ago, having been forced to resign over the amount of time he wanted to take off to keep Chris company after his transplant. The company he started to work for is one of those rare breeds, full sickness pay, pension scheme, annual medical etc....All good.

He came home yesterday afternoon and said "I don't want you to get too worried over this but I got re-called for a lung function test" and the nurse said I have to make an appt with my GP as I have the lungs of a 56 year old. Ok, It could be your asthma playing up I said, Nah, she reckons its much more than asthma, so have to have it checked out.

Instead of ringing the GP, I rang Chris's old CF unit and spoke to the cf nurse, explained the situation to her and gave her Mike's reading as he'd had a go on Chris's machine he has at home. She said in light of the info I had given her, she'd have a word with the consultant, who was in the next room and asked me to hang on a minute. She returned and said the consultant would be happy to see Mike, not at a cf clinic or his general clinic, but on his own, all that was needed was for him to see his GP, or me to ring them and ask for them to refer him.

At this point I got slightly concerned, hell I'd lived with CF all my life, surely to God I'd know if my eldest son had it....wouldn't I. He's 6ft and weighs around 13 stone, yes he's had a fair few chest infections and seems to be prone to more colds than the average person but doesn't have a weight problem and has worked full time since leaving school. However he assures me tonight that he wouldn't weigh that much without the supplements he takes for body building as he's always battled to put weight on if he only ate normally. Am I blind or what!!!!!

I honestly don't think Mike has CF, but we'll have to wait and see, and meantime keep everything crossed that his lowish lung function is just due to an every day infection, that any one of us could pick up.

Cats and Hats

I made a promise to accompany Chris on his daily 30 minute walks, as my own fitness has declined somewhat since the Hydro in September, just cant seem to get my rear back on the bike, in fact I cant even see the bike any more, as its become the dumping ground for anything that will hang on the handlebars or balance on the seat. Anyway, he was buzzing yesterday, because the time had finally arrived when his fitness instructor at the hoz said he could start weights, only digestives, as he called them, but nonetheless it was weight training, squats and punching a pad thing, which was a tad more interesting than the treadmill. So, still buzzing today he couldn't wait to get out for the 30 minute walk, I however could wait and stalled for a good 2 hours, hoping it would get up to a degree I can cope with, as I'm well known for being the coldest person in the world. It was obviously not going to stop raining or being windy and soon the bloody dark would be descending, so we set off to a nearby little Forrest, with so many layers on I could barely move a limb independently, oh yes, and silly hats. The one Chris had on made me laugh loads and each time I laughed at him he pushed me into a ravine, ditch, tree or pile of dog crap. As I didn't have a stupid enough hat, I wound a cream scarf round me head and under my chin, so I looked like Bin lid. We're going stoooopid hat shopping soon, as we quite fancy looking totally outrageous when we do our daily jaunts.

If I've said it once, I've said it a hundred million times...No more pets!!!!

I've done one my stint with animals, we've had everything here, including a one-eyed terrapin that would only eat prawns and bit you every time you fed it. Then, this little bugger arrived on my doorstep on Sunday night, giving it the full, "I'm lost and hungry" touch. I stuck it out for about 30 minutes, by which time all three men in the house we're telling me I'd got cold and hard and how could I possibly sleep at night knowing the mite had to battle the elements, and it was sooooooo thin. It now lives here, much to my other two cat's disgust. I put an add in the local newsagents, but Mike and Chris reckon they're taking it down tomorrow. I bet you any money it belongs to one of our neighbours and we'll be done for cat-napping .

Testing 123

Will it work ?

Whooooooo, I can put pic's on me blog.

On a serious note.

Its been a day of reflection in my world today, for a number of reasons, the main one being I was ready to sit down and write a letter, or rather 3 letters, to the donor family that gave our Chris new lungs and a "new start".

After asking for details of the donor and their family, the transplant co-ordinator had said, if we decided we would like to write a letter, would we please do 3, as mum and dad were separated and our donor was in a relashionship and had a young son, and naturally they would each like to have their own letter. I'd thought about Chris's donor from the very minute he got his call, but cant describe how I felt when I was given the details, this could have been our Mike or Chris. What for us was the happiest day of our lives, was for them the saddest, I was choked and really couldnt speak.

How on earth can you put into words how much their gift of life meant to us, there really are'nt any words worthy enough, its just too huge. Today though, I just knew it was the right time to write it down as Chris had come home from hospital after a very nasty gastric-enteritis virus. That might sound odd, but the reasoning behind it is this, he came home fully recovered after only 3 days, no after effects, no drop in lung function, back on his feet, and happy.


http://www.livelifethengivelife.co.uk/

The Horse

Someone printed this out and gave it to me a long time ago, I love it, it always makes me grin, when I'm rushing around achieving very little and in danger of becoming a non smiley person. I look at it in two different ways.

1) If all the best laid plans have to be scraped...so what!!!!
2) A horse day is just round the corner...brilliant.

The horse walked with a patient, uncomplaining gait, It had long grown used to being wherever it was put, but for once, it felt like it didn’t mind this. Here, it thought, was a pleasant field. Here was grass, here was a hedge it could look at. There was enough space that it could go for a trot later on, if it felt the urge. The humans drove off and left it to its own devices, to which it was quite content to be left. It went for a little amble, and then, just for the hell of it, stopped ambling. It could do what it liked.

What pleasure.
What very great and unaccustomed pleasure.
It slowly surveyed the whole field, then it decided to plan out a nice relaxed day for itself. A little trot later on, it thought, maybe around threeish. After that a bit of a lie down over on the east side of the field where the grass was thicker. It looked like a suitable spot to think about supper in.

Lunch, it rather fancied, could be taken at the south end of the field where a small stream ran, lunch by a stream, for heavens sake, this was bliss.

It also quite liked the notion of spending half an hour, walking alternately, a little bit to the left and then a little bit to the right, for no apparent reason. It didn’t know whether the time between two and three would be best spent swishing its tail or mulling things over.

Of course, it could always do both, if it so wished, and go for its trot a little later, and it had just spotted what looked like a fine piece of hedge for watching things over, that would while away a pleasant pre-prandial hour or two.

Good.
An excellent plan.
And the best thing about it was, having made it, the horse could now completely and utterly ignore it. It went instead for a leisurely stand under the only tree in the field.

Cant you just visualise the horse going la la la and thinking "ahhhh, all is well with the world", or have I completley lost the plot.

Chris is a lot better tonight, so is planning his escape and to be honest the sooner he's out of there the better, hozzie is not the best place to be when immunosuppressed. Its been a mission to get the nurses to understand he will not fit into their regime ie: eat when told, IV insulin cos you cant control your sugars when not eating, up at 6, drugs at the time we push the trolley thing round. But we got there in the end, there was one last nurse who stuck it out until today, he gave in when the third consultant told him to leave it to Chris as he knows better than anyone. I felt a bit sorry for him really, he meant well, but his need to go off shift having ticked all the relevent boxes was stronger than his ability to see his patients as individuals, who just might know a bit more about their medical condition than him.

Final note, I crashed Chris's car today. It was the roundabout one, busy busy roundabout, spotted a gap and tried to drive through the car I had'nt noticed was in front of me. He was a lovely man, even insisted on checking under my bonnet so I was safe to carry on my journey, see...nice people in this world. He had a tow bar fitted so there was very little damage to his car, but I managed to make a mess of Chris's, he said its only a bit of metal mother, pheeew!!! Had my meditation class tonight, which was handy as I meditated the bit of whiplash right outa me.

Be prepared !!!

Hi Nicola, nice of you to post a message hun, I'm still an apprentice at blogging, next challenge...put a pic up.

I'm blogging at 4-45am, mainly so I can remember the events of yesterday, when I look tonight, if that makes any sense.
Chris was wonderfully well after the biopsy and continued to be so when he went off to bed, with crunchie, muller fruit corner and a bit of something else, choc chip cookie I think. However he woke at 5am in considerable pain and chucking up. As advised I rang the transplant clinic, (around midday) as the anti-rejection meds came back exactly as they went in. Message was left and I was told a nurse would get back to me, ok fine, not going to mither....just yet. At 4-45pm, I decided it merited another phone call, as Chris was now a shitty shade of yellow and becoming dehydrated. The nurse who answered was a little irritated and said they had been very busy and only do emergency phone calls, leaving routine one's until the afternoon. I was amazingly calm, for someone as irate as I felt and told her we'd been instructed to ring them if there was a problem with vomiting/diarrhoea, and there clearly was. She informed me they had no beds and Chris must be seen by a G.P. today, thank you for your help I said I'll ring him now agrhh....

G.P. came straight away and said he had to go into hospital, high temp, low blood pressure, fast heart rate and dehydrated. He then spent ages trying to speak to someone on the transplant team for advice, finally he was told there was indeed no beds and could he have him admitted to local hospital. Now, you know as well as I do, most local hospitals are not experts in cf, let alone transplant, so I packed every single thing in sight, including marmite butties and my book, as I wasn't moving until I was totally satisfied they weren't going to prescribe creon at 8am, 2pm, 6pm and 10pm, as they did when he was in ICU.

I need not have worried, he had to go in through casualty till they found a bed and the staff were in no hurry to see me go, he got the usual questions about how long he'd had cf and "why did they have to wait until he was really poorly to transplant him" granted, that came from a paramedic. But on the whole they were very very nice and we were both given VIP treatment, just so long as I didn't move very far.

I'm probably boring you now, so I'll cut it short, he's on a ward and they cant decide whether its appendix or gastric-enteritis, neither of which is very pleasant, but he's a bit more comfy after I asked them to give him IV paracetamol and ondansetron (anti-sickness). They are waiting for the senior registrar to come in at 8am for a second opinion, so I've come home to wash and change me jumper, cos I smell now.

The two nurses who looked after him in casualty have been superstars, each time I went down to make a phone call, they made me another cuppa and fed me egg butties, bless them.

Aint there some nice people eh!!!!

I've met some really nice people in the last two days, Libra must be in conjunction with pluto on a rising moon, bringing love and joy into all aspects of my thingy.

Yesterday I got a text saying "Are you home today". I replied, I am, why? Well I'm in the area and thought I'd pop over to see you. I said brilliant and less than an hour later I picked up someone who until then I had only spoken to in cyberland and an odd phone call. What a fab person she was, so much energy for her age and great company, she's involved in loads of different things, on the board of this, that and the other as well as touring the country by rail. We spent the whole day together and she met John, Mike and Chris, she was particularly chuffed to meet Chris, as he was the reason we'd got chatting in the first place. Transplant was what got us communicating originally, Chris had his 12 weeks ago and her daughter had hers 2 years ago, I'd emailed her in the early days after Chris's operation as I wanted to talk to another parent who'd been there before. It was a most enjoyable day and I drove her back to where she was staying around 7pm. When we arrived the people she was staying with came out and invited me in for a cuppa, never one to turn down a brew I accepted. We'd only been in there 5 minutes when the doorbell rang and in came a young couple arms full of Chinese banquet, seconds later I was at a table with four people I'd never met and my now good buddy. They wouldn't hear of me leaving without joining them and I hadn't eaten for erm...about 2 hours, so I got stuck in, had a good laugh and felt like I'd known them for years. Very very nice people.

This morning got up to find no insulin in fridge...zilch...nowt. I thought Chris had picked it up and he thought I had, I had to admit I'd said I would, but forgot. Phoned emergency clinic expecting it to be a letter from the Holy ghost, at least, to get a script. Wrong, the receptionist couldn't have been nicer, got the thing organised within 10 minutes and rang to say I could pick it up. I didn't relish the idea of driving into the town centre on a Sunday morning, then searching for the chemist in a one way system that I've never managed to get round without breaking the law at least once, but I put my music on very loud and set off. When I got there, not only did she have the script ready, she gave me fail safe directions to chemist and was quite possibly the most smiley person I've ever seen, considering she was working on a Sunday. Had to park on double yellers while I nipped into the chemist, so still maintain my record for never driving in and out of Chester town centre without breaking the law. Drove home with music belting out, singing as loud as I could....brilliant.

This afternoon me and Chris took off for his 30 minute walk (he has to do at least 1800 steps in 30 minutes for his re-hab) and ended up in a beautiful park, with thousands of squirrels all over the place. There was an art exhibition in one of the buildings and as he's passionate about his drawing we decided to go have a look. Well, I thought I'd already had my fair share of nice people for the weekend, but no, it wasn't over yet. The bloke who was making the tea and coffee was a gem, he gave us the low down on the exhibition and nattered to Chris about his art. During their conversation it came up about Chris having had a transplant 12 weeks ago and it turned out he knew someone who we also knew from the cf unit, who's waiting for a liver transplant. There was also an elderly couple sitting at another table, the woman was waiting to go in for an operation and was extremely anxious about it all, so this bloke shouted to her "this young lad has just had a double lung transplant and look how well he's doing". More conversation ensued together with plenty of laughing, it looks like we'll be going there again, as Chris is signing up for a life drawing class (the one that you draw nudes!!) and has said he'd be prepared to do a bit of voluntary work for them. The bloke has also advised him to enter the open exhibition for new artists next year and you know what he said...I bloody will, cos I can plan ahead now.

Considering I didn't want to be a blogger, I've wittered on, haven't I, so I'll shut up now.
Chris has his 3 month biopsy tomorrow to check for any signs of infection or rejection, so we'll probably be in the hospital until early evening, time to catch up with an old friend who's son had his transplant a week ago.

No spell check done, as arm is dropping off now.

Dam it

Just so I can put a comment on my buddy's blog, I have had to give in and become a blogger. Thats all for today!!