Funny walk

I had my coffee delivered to my bed yesterday morning by a wide awake son. After spending half of Monday catching up due to his weekend away Chris was up at the crack of dawn and raring to go, as I was showing no signs of wanting to move myself he brought me coffee, fed the cats and got his neb on. This is a major turn around as I can’t remember a time when he’d been up before me and nobody ever feeds the moggies unless I’m away from home. I’d been to the gym again the night before and everything felt like a lead weight so was tempted to turn over again but he hollered up the stairs GET UP you lazy git.. so I did. Couldn’t get in the shower though as he beat me to that as well.

Chris got a phone call from Wythenshawe around midday to tell him to come in before 4pm, this was to sort out the wires in his chest. Normally they don’t cause a problem but the one’s on the front of his chest at the bottom of his rib cage had decided to move around and were causing him some discomfort when coughing or sneezing, he’s also unable to do his blows properly and that’s an important part of monitoring his progress. Anyway he told me I couldn’t go with him (love it) and off he went, but returned a couple of hours later as they said they weren’t happy to give him a general because he had a slight cold. This turned out to be a good move because this morning he’s not too good and the cold seems to have got worse so he’s gone back to bed.

I’ve been to the gym again this morning, note I’m now calling it the gym not the torture chamber, if I ever start referring to it as ‘the club’ please give me a reminder to get real. I’m a bit bothered about one of the floor exercises I’m supposed to do for balance and couldn’t bring myself to do it this morning. I was telling our Mike about it last night and he was horrified, said he’d never seen anyone else doing it down there before and I better not let it be known I’m his mother if I carry on doing it. Do you ever remember how Basil Fawlty used to do the stoooopid german type walk, well its that one, I have to go from one end of the gym to the other sort of lunging, naturally because my balance is so rubbish I’m all over the place anyway. Mike reckons they’ve thought to themselves lets get this one on that Basil walk and they’re all p*****g themselves laughing in the staff room…..so I didn’t do it this morning. I also clocked some poor guy in the ear when I rolled off me ball. All good stuff, its really quite addictive. Am I boring you?

The bad, the good and erm.....

Well I finally got my rear into gear and went to the torture chamber tonight. I'd love to say I feel invigorated and I might...in a few days when everything stops trembling. As the one and only time I'd put in an appearance was at the induction a few weeks ago, naturally I had forgotten which particular intrument of torture does what to which bit and how to set the thing up. Not wanting to look a complete wally I pretended I knew exactly what I was doing, stuck my earphones in and did the treadmill and bike hoping that some official looking slave driver would show up before I finished. One did and he was very patient bless him. I ended up doing only three quarters of my program because I forgot to look at the back of the sheet which was good really because had I seen it and tried to do it all I'm pretty sure I would now be on ward 34

And them balls, what are they all about eh!! balance is not my thing, I cant do it, I CANNOT DO IT. Try as I might I always end up slithering to the floor. I'll just swim tomorrow I'm good at that.

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Number whatever it is has been knocked off the list thanks to my neice going on holiday for a week and throwing her car keys in my direction.

I've had this little toy to play with for a week only downside is you cant fit shopping bags anywhere so they're all looking a bit thin in my house at the moment.

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Quick update on Chris, he had his peg removed on Thursday as his weight has continued to climb despite becoming vegetarian a week ago, in fact he's probably eaten better since becoming veggie than he did before. The peg going was a big landmark for him as he's always hated it with a vengence. He's away this weekend with some friends in a log cabin in Snowdonia and out of range I presume by the lack of text....all good.

Phew!!!

Well I finally got Chris's transplant blog finished and posted on the cf forum, its been a mission finding all the bits and pieces I scribbled on but its done. Still not sure whether it was appropriate to put on the forum but Chris and I felt it was a positive and the feedback from the people I asked to preview it was good so I did it. In a way its a closeure for me, its been a rollacoaster ride for a few years now and the forum has been a godsend but I feel its time to move on. Thank you to everyone who helped me out since I joined in 2004, its been a very special time in my life.

I'll be keeping me blog going and no doubt will post a game now and then on the forum.

Take care everyone.
Sue xxx

OMG How easy was that!!

Ignore this blog, I stumbled across something I'd been wondering about while I was rounding up Chris's blog.

Here's a little chocolate number I threw together while standing on my head, hands tied behind my back and blindfolded. Thats number 8 off the list.....hah!

Drive time

My feet have become itchy again so I'm gone till Sunday, unless they have internet access in Whitley Bay. Take care all, have a good weekend.

The Iron

Becoming domesticated again wormed its way onto my 1-10 list but has been removed because I was furious today......furious.
I thought I'd buy a new iron as the one i occasionally use is blackened and I can only iron dark clothes safely. Our Chris is a lover of white tops and most of them have random black speckles with scratchy marks where I've tried to pick it off, so much so that he now forbids me to iron any of his clothes.

I headed off to Argos, my mission...to purchase an iron and win back my sons approval. Go get your Argos catalogue out and look how many irons are in it. I'll tell you how many 76...seventy six of them, get a grip Argos its an iron you plug it in it gets hot and you plonk it on a piece of clothing which then goes smooth instead of crinkly. For crying out loud why do I have the tedious task of reading about seventy six irons just so I know Ive purchased the right one. Im not doing it! you are not turning me into someone who gives a dam how this hated piece of equiptment sprays mist out of the little holes. I shut my eyes, stabbed the first page and bought the one it landed on.

Mike went for another lung function test today and its gone down a bit as has his weight. Only one more test now then back to the doctor for some answers I hope.

Chris continues to do fabulously he's off for 4 days in a log cabin in Snowdonia soon with his mates and today he went to the job centre to browse. I still can't get my head round the fact that he can do practically anything he wants to, and does.

Oh yeah I had my induction at the gym today. When asked what my goal was I said I wanted to run a 5k in September, tighten a few things up and increase a bit here and there. No problem she said. My program is a grueller and I have very jelly legs so there's a loooooong way to go but Gilly did it so I can too.

Coffee, cake and much chin wagging on the horizon soon as a get together is on the cards with my forum buddies......magic.

Note to me: This was the 31st of Jan but couldnt log in to blogger as keyboard was being a pain.

Its the little things in life...

I’ve had a very excellent day so far today and its all thanks to a 3½" x 1½" pink toy.

As I now have much more time to myself I have to think very hard for excuses as to why I haven’t done any boooooring housework. I realised today that I’d used them all up and I’d have to give in and get stuck in. Then I spotted my Christmas present which everybody but me had had a go of, mainly because I’d not got round to having a fiddle with it as yet.

One of the men had kindly put a Suzie playlist on it so I stuck the phones in my ears and dragged the hoover out.
Well…..! How brilliant are these little blighters eh!I had a good old boogie with Robbie while hovering, The Eagles saw the dusting at a leisurely pace and I kind of reggae mopped to UB40.

Onto the exercise bike and I was back at the Snow Patrol concert…..magic
There’s a very real danger I could become domesticated.

Hang on…..who invented the ipod, was it a man? Is this some clever move to make women clean their houses.

Bob The Builder

They were dragging their feet, as insurance companies do so I told them the garage was inching towards the house and would very soon be in my kitchen....cue...much action today. I had three large vehicles here in no time and five men, all rugged and a bit dirty. Had to get my supervisor head on though, you know the one its the customer from hell routine, well they were jumping on the roof and squashing things that weren't flat yet. Their biggest challenge was to capture the adopted kitten, they took 8 poloroid photo's (didnt think they still existed) of the broken garage and she was in every single shot. She joined them while they bounced on the roof to collapse the last bit, she hung off their belts and pockets and chewed their laces while they bashed the brickwork. In the end the man in charge bundled her under his arm and asked me to please shove her in a cupboard or something for their safety. I made them a brew and we chewed the fat about the windy day, they had only had one other incident like ours, it was on Angelsey and theirs ended up in a field. Good bunch, coming back tomorrow, so I nipped out there tonight and moved everything that is still not flat before it is.

Know any good builder's?

My garage is very broken!



I was sitting quietly reading my book, the wind gusted and it fell down about 3 ft away from me.....just like that, scared the hell outa me. I rang hubby at work to tell him and he laughed, in fact I've never ever heard my very conservative hubby laugh so heartily in all his life. I hung up, couldnt see the funny side of it at that point, most people I've told have laughed.....IT WAS SCARY....NOT FUNNY!!!









He he he...........

Cats and hats 2

The kitten from hell who's owners were very wise to lose it is on borrowed time here, I love cats, I've always been a cat lover but this devil incarnate is really pushing the boundries. Is it possible for cats to have hyperactivity? Hell no, its not just a cat with neverending energy, its plain wicked and a scrounger. I feed it the very best 'As good as it looks' Felix which cost's an arm and a leg, grateful.....is she heck as like! She prefers rubber or aneeeeeething thats lying on the worktops, be it a spud, a saline neb top or dried erb's. It smashed every single gold bauble on the christmas tree and ate the legs of the chicken I purchased in Notts at 'Hawkins bazaare'. My two older cats now live in mortal terror and have to carefully plan their route to food bowl and quick escape.

She has to be everywhere, all the time and I was soooo tempted to seal the bag when packing away my christmas dec's!

She's going on ebay tomorrow.

Update on Chris, his lung function is now 90% and chest x-ray is clear except for an area of fluid on the bottom right hand side of his chest wall where they had a bit of a job getting the old lung out, the doc says it can take up to 12 months for that to disperse. Chris can't feel it and it certainly hasn't affected his lung function, so he's not worrying about it. His weight continues to improve so the peg/button is coming out early in Feb. If he hadn't had a slight cold he could have knocked off more meds and nebs but just to be on the safe side they stay in case the cold gets on his chest. His re-hab is going great, the physio say's its no use doing any more walking on the treadmill as he's up to normal now, so onto power walking, jogging and weights.

His turn for silly hat, pic taken early morning.....scary.

Fantastic News

I'm so pleased to write tonight that Emily has had her call and is in theatre right now. My thoughts and prayers go to her, all her family and friends and to the family who made the gift of a new life possible. Words can't describe how grateful we all are for Chris's new start and we wish Emily all the very best for a speedy recovery and a brand new life.

http://livelifethengivelife.co.uk

Number 5 and update.

I consulted my 1-10 list of things to do before I die this weekend and decided I'd do No.5, mainly because the weather is foul and 1-4 would be much nicer done in the sun. This one was going to be easy peasy, my list isn't meant to be difficult, but some are a wee bit challenging and others are just there because I've been meaning to do them for years, like No.5.

5) For goodness sake broaden your literary knowledge!

In other words read something I wouldn't normally choose. My list is colour coded and green is intellectual by the way. So, I was sitting on the wicker couch in the kitchen (me and John live in the kitchen) mumbling about whether to go to the 'Try before you buy and sit dead comfy while you do shop' to select a suitable book when John produced one and said "this is a good book, I think you'll enjoy it"

I managed to stick with it through the hunting of the river cows (hippo's) skipping the most gory bits, I completely ignored the crocodile bit and thought it looked promising. However, the reason why the orator became a eunuch was to prove too much and I flung it. Its fiction dear....fiction, well call it what you like but I want to read a nice book not one that gives me palpitations and an overwhelming desire to hunt down the Pharaoh and.......tell him off. So its off to Borders tomorrow, not to buy a romantic novel though or I'll not be able to knock No 5 off the list.



Mike had his appt with the cf consultant, he had a lung function test, chest x-ray, and they took bloods for genetic testing, it felt a bit strange going through the motions with No 1 son, the nurse came out and called me in (momentary panic) after 15 minutes because the consultant knows me well and decided it would be easier if he explained everything to me too, saves Mike the 20 questions which he wouldn't remember the answer to. He doesn't think Mike has cf but because he has lowish lung function and taking into account the family history he's sending him for a more in depth lung function test, a lung scan and something they now do at Alder Hey instead of a sweat test which involves cream in the nose and electrodes.



Chris is continuing to enjoy his new life and had an amazing Christmas and New Year, its absolutely brilliant to see and I'm still a bit lost for words sometimes, he's due back at clinic on Friday so will update in more detail after that.

http://livelifethengivelife.co.uk

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 .