Friday, 27 February 2009

A rough end....and beginning!

Sunday saw not only the usual PV activities but hubby's parents in a flap over me as my breathing had gone to pot. I couldn't even stand up to go to the loo without them fussing over what was I doing and where was I going.

It's lovely that they care so much but when you're feeling rough all you want to do is curl up on the sofa under a blanket and slob out. They were talking about staying an extra night just in case I end up going back into hospital on Monday and they would take me in.

Between hubby and me, we kindly persuaded them that all would be well and I promised that I would take things easy so they packed up their things and headed off to meet friends for lunch (en route to their home).

Nothing is pretty much all I did. Hubby wouldn't let me cook, clean or lift a finger around the house, so a just had to chill out and relax the best I could.

Monday morning saw me getting up with hubby as usual to see him off to work and start the usual PV bits and bobs. Mum phoned from her work at 8.30 am wanting to know if i'd called the Brompton yet...which I hadn't, so she then started going on about what I need to tell them and I was to call as soon as she hung up. Mother i'm 34 years old not 16, i've made phone calls

I left it until 9 am before I called and spoke to Millie my CF nurse who has a chat with my CF team and decide to put my steroids back up to 20mg!!! Oh it's gonna take me even longer to get off of these "make me look fat and bloated permanently" pills BUT if they make me feel better I guess it's an ok trade off.

Millie tells me to take 20mg for 1 week then step down and to call on Wednesday to discuss my progress.

She also tells me that on the syrup prep of Itraconazole my levels are now good and the aspergillus should be getting under control. Then why am I feeling so rubbish when everything indicates it's all going well?

Anyway, I spend the rest of the morning getting washed, dressed and tidying the house which, by the end of this, i'm doing a very good impression of a fish out of water.

I call mum and ask if she can go and put in a prescription for me as i'm just too rough to go out and do it. 30 minutes later her and Bob arrive and chat about what Millie said and what I need from my GP's. They head off and I wait for the benefits that 20mgs of steroids are supposed to give.

Tuesday felt a bit better. Even managed to do a 1 hours cycle on the exercise bike....things are looking up.

Dee came over and we drive over to the Pottery cafe in Hythe to collect our pots. We've decided to finish them at home as it's too dusty for both me and Dee and the baby to do there. So I now have a large box filled with glazes, brushes, mixing pots, sponges, pencils, sanding paper AND 2 large pots sat in my dinning room waiting for a masterpiece to

We pop by mum's to see if she is OK? Bob had left to go out to their holiday home in Cyprus for the next few months (mum couldn't go because of issues with her work, but is going out in a few weeks time for a month) and she was being Mrs mop cleaning the house.

After an afternoon of girly chat we all go our separate ways and everyone's feeling happier that I'm finding things a little easier.

Spoke too soon. Tuesday night was an absolute nightmare. Was in so much pain and real problems catching my breath. I called Millie again 1st thing Wednesday morning and she is concerned and wants me to come in to out patients ASAP. I really want hubby to be with me which means the earliest he can take me is next Tuesday. Millie agrees on the proviso that if I can cope or things get worse I call and come in sooner. I kinda feel a sense of relief that i'm going back to get things sorted but also scared that there is something else causing these issues.

I decide i'm not going to give into this and feel sorry for myself so I let mum and Dee both know that I would still like to come shoppping today BUT I may need to be pushed in my chair for some of it. They say no problem so off to Folkestone we go. I managed to walk around half of Asda before i'd had enough and went chair side.

We had to stop off at Starbucks (such a shame I so Dee could feed Isabella. Gave me the excuse to treat myself to one of their scrummy hot chocs topped with whipped cream....well whilst on

The rest of the shopping trip involved a bit of spending in a couple of clothes shops, an absolutely amazing cook book from Waterstones and a new DS game called Prof Layton....something or other (which isn't a bad game actually). So an enjoyable afternoon was had by all.

Breathing wise I should be on top of the world with all the meds i'm on. In reality I'm pretty close to the bottom of it. I hope Tuesday will see some light (or at least breath) at the end of this tunnel.

Blog more soon


PS. Does anyone else have a link on their blog to the Organ donation people? I applied and they've sent me a link, but I can't get Blogger (add a gadget) to accept it. Any help or suggestions would be greatly received.

Wednesday, 25 February 2009

The In-Laws Descend!!!

Friday morning started with the usual PV (project Vix) shenanigans and then the house tidy-up begun. Well that was the theory. In practice, my physio was being less than successful at ridding my swollen steroid body of anything, I was getting breathless walking to the kitchen and my plans to tidy the house and make some cakes and honeycomb was fading fast.

I decide to plonk myself in a long hot shower in the hope that the steam will free things up and to an extent, it did. So I make a start on tidying the lounge and head to the kitchen and make chocolate brownies and honeycomb.

By the time the brownies have finished cooking, the kitchen is hot and steamy and I can't breathe. Aaaarrgghhhh!!!!!!

A swift phone call goes out to mum and Bob for help to finish tidying the house. 20 minutes later Mr. and Mrs mop arrive.

Bob heads straight for the kitchen and makes everything so shiny, mum heads upstairs with the hoover and I finish off emptying the bins and generally have a bit of a throw out.

90 minutes later the house looks immaculate and ready for the in-laws to descend for the weekend.

They arrive just after 3pm and hubby is not home until 7pm. What can I do to entertain them for 4 hours? So another phone call goes out to my sister. They had wanted to catch up with her since seeing her and baby Isabella at the wedding and Friday was really going to be the only opportunity for them to do it.

So off we all bundle into their car for the 9 mile journey to my sisters. We spent a couple of hours there over several cups of tea and hot choc and Isabella was in her element. The time whizzed passed so quickly that before we knew it, it was almost 6pm.

We said our goodbye's, headed home and decided en route that it would be easier all round to go out for dinner, as my breathing had been playing up all day.

So as hubby gets home from work, he has a quick change and we're off for to the best Indian restaurant. The food is not only delicious but plentiful. I had poppadoms with chutneys, a prawn puri, chicken tikka Kashmir and pilau rice. OMG I ate too much. I think the breathlessness as we get up to leave was more due to overeating than anything else.

At home I go through the last round of meds and physio before heading up to bed.

Saturday saw hubby having to go into work for a half day. His parents decide to go and hit the outlet store and I decide that as I've invited my mum and Bob over to have a big family dinner tonight, I'd better prep for it.

So after the usual PV stuff and still feeling breathy I make a start. Home made broccoli and Stilton soup takes no time at all, and chicken liver pate all done as the in-laws arrive back under bags of goodies.

By this time my breathing seems to have gone to pot. Hubby's mum insists I go and sit while she tidies the kitchen and makes a round of tea and hot choc.

Hubby arrives home and is a little worried that I'm crashing so soon after getting out of hospital. The problem is being a weekend, I can't really contact my CF team as they're not around. I take another nebuliser which kind of helps and insist that we're still going out as I'm not giving into this not breathing malarkey.

So we head out for some lunch at a lovely pub in a place called Bridge near Canterbury where I had the most scrummy ribs and chips (which I ended up sharing as there was so much). We then headed off to Faversham, to a brilliant farm shop that has amazing produce and ingredients and bought the entire cheese counter (well that's how it so we could serve cheese after dinner.

We head home and hubby and I dart for the kitchen to make a start on dinner. We decided that we'd serve the pate as a starter, fish pie for dinner and chocolate brownies for dessert followed by the cheese.

About 10 minutes into it I was getting breathless again so hubby gets me a chair and tells me to direct him around the kitchen with what to do. He is such a great cook anyway and it all worked out beautifully.

Mum and Bob arrive and a good night was had by all. The pate was a huge success and all went as did the fish pie. The only problem was that by the time we'd eaten all of that no-one felt that they could eat dessert but perhaps a little cheese. So the rest of the evening was divided up with wine, cheese, Wii bowling and good conversation.

Blog more soon


Tuesday, 24 February 2009

Another day another worry

Again, after a morning round of Project Vix, my sister arrived with baby Isabella. We had arranged to take Becky to Canterbury so that she could shop for new make-up and brushes following the whole make over bit yesterday. Only issue I'm breathless. I sit and get breathless, I walk to the loo, breathless. Hmmmm not good.

I put it down to the fact that it is a bit of a damp murky day (which tends to sit thickly on my chest) and it will lift if I just persevere.

So off we bundle to Canterbury and my breathlessness is not easing. There is no way i'm going to be able to walk around Canterbury, I can't even walk around the car! Wheelchair out.

I've only just started using the chair after my last bout of poor health. I'd been fighting not to use it for ages but was finding that I was missing out on doing things just because of my pride. I have to admit the chair had given me a new found freedom (to an extent).

As we arrive in Canterbury the bun fight to find a disabled parking space begins. Just when I think what luck as a car come reversing out of a space (so I put my indicators on to pull into it when they are clear) a Skoda, how had apparently reversed from the next line of cars over, drove over the paving separating the spaces and between a bin and lampost and pulled into the space. We all look in amazement at this idiot. He even drew a crowd who all stopped to stare at this rediculous 20 point move it took him to get into it. Some people!!!!

Anyway as we drove round the corner (where the skoda had come from) there was a space, so in we pulled.

We unloaded the car and with sister Dee pushing me and Becky pushing Isabella in her pram we were off.

Well i've never seen so many people walk around with their eyes closed. I must have been walked into and tripped over 10 times! I'm in a whacking great wheelchair how can they miss me??? Also have you ever noticed how UN-friendly a lot of the clothes shops are to wheelchair users? They put all these rails in artistic places and cram as much as they can in which is all ok if you can sidestep through the tiniest of gaps they leave. In a wheelchair or for the larger person forget it (otherwise you'll just take the clothes

Rant back to Canterbury. After hitting about a dozen shops we nipped off for a coffee and to feed Isabella. The amount of people who stopped and chatted to us so that they could coo at Isabella. She is only 10 weeks old but she was born with long (for a baby anyway) blonde hair which is apparently very unusual.

As we finish all our shopping we head home and I head back into my round 2 of meds and physio.

Things feel a little easier breathingwise so I make a start on dinner beef stroganoff. A start is as far as I get. Can't breathe as it's just too hot and humid, so bless him hubby comes home after a horrific day at work and finished the cooking (even flambeed the beef - very

Decide to have an early night (in between the bouts of insomnia) and see if that helps.

Blog more soon


PS. Thank you for your lovely comments ladies, will definitely keep you updated and if there is anything you need help with Gemma for your wonderful day, please just ask.


Have to say it was absolutely delicious.

Monday, 23 February 2009

Make Overs and Fame's a Calling

Ok, so the usual round of Project Vix started the day - well kind of. I really had overdone it on Tuesday as I was bringing up quite bloody yuck during my physio session and was getting breathless again. So decided to take Wednesday a little easier.

Met up with my sister (who is a make-up artist when not being a new mum) and headed off to my mums to set to on Bobs daughter on a grand make over session.

Becky, is 14 going on 40 and is suffering from that puberty stage where your hair and skin just doesn't do what you want it to do. So between us and our friend Anita we sorted out a program of how to treat her skin, apply make-up and highlighted and cut her hair. The difference in her self confidence was probably the biggest change, which was lovely to see.

During the day I got a phonecall from our videographer asking whether he could forward our wedding dvd into a national competition and to Wedding TV as they may want to use it on a program called Wedding Breakfast (they show a 2 min overall of the day to give other brides ideas I guess). I said of course (he had mentioned it before and hubby and I had already discussed it) and thought nothing more of it.

Well 20 mins later, I get a phonecall from a lady called Nessa from Wedding TV. They're making a series of programs called Happy Ever After and want to do a 1 hour program based upon hubby and me!!! OMG!!!!!

So we now have a film crew coming round to spend a day with us in March, interviewing hubby and I as well as friends and family. Eeekkkk!!! Will keep you all updated as to when it will be screened on TV.

Anyway during the whole day, my breathlessness is being more and more evident. I'm a little worried as i've only been out of hospital a few days. Think I may just have overdone things a bit. Will take it easier on the exercise front.

As hubby gets home, he decides to celebrate our potential soon to be found fame (lol) and treats me to one of his culinary specials by cooking a wonderful steak dinner (mine with a stilton sauce - thank you steroids for the savoury cravings) It was the most delicious steak i've ever eaten. It cut like butter...yummmmm.

Hubby is a little concerned that i'm getting breathless doing simple tasks especially after only just coming off of a 2 week course of IV's and I have to admit, so am I.

Will blog more soon


Sunday, 22 February 2009

Lights, Camera, Mussels!!!

Tuesday saw the now normal Project Vix kick start the day after seeing hubby off to work at 6.30 am. Only I think I perhaps set my exercise progam a little too high (especially as i've only been out of hospital 3 days). By the time I climbed down off of my exercise bike after a 1 hour cycle, not only did every muscle in my legs and bum hurt BUT my lungs felt like they were on fire.

I figured that sometimes a warming cup of hot choc will do it's trick of calming things down and if I sit and chill out for an hour, whilst watching dubious members of the human race (and I use that term loosely) on the Jeremy Kyle show things will be fine....well kind of anyway.

Half way through JK there was a knock on the door from our postie. Oooo presents? goodies? No better....Our wedding DVD!!! YAY

As JK finishes I shoot over to my sisters to pick her and baby Isabella up then head off to the fishmongers (wanted to cook hubby moules marinere tonight) and butchers to stock up our empty fridge and freezer (that and for some strange reason we appear to have invited a lot of people over for dinner throughout the week).

It is only when I have to park a distance from the fishmongers do I realise I might have done myself an injury. I couldn't walk 100 metres without stopping and getting my breath and on the way back, carrying a rather heavy bag, had to stop twice to catch my breath. Oooo dear not good.

As I clamber into the car and put the blowers on cool and full blast to help me get my breath, I get the lecture from my sister about overdoing it. I then have to listen to this lecture for the next 9 miles as we drive to collect my mum from work (Bob, her partner had to drive to Chichester to collect his daughter Becky who is staying with them during the half term, so had the car) who duly picks up from where my sister leaves off for the 10 min journey to drive her home.

Help I need to escape!!! Cue my wonderful hubby who is on a half day at work and is en route home. Thank you Lord!!! However mum now knows of the wedding DVD and Bob her partner heard the words moules marinere, so we now have guests for dinner and the 1st screening of our DVD.

My sister, Isabella and I leave my mums and collect hubby from home and drive my sister and Isabella to their baby massage course. Hubby and I then head off to the bank to continue the round of changing my name with the various organisations since getting married.

Next the dreaded Tesco's. By this time i'm really struggling to breath and my nebs don't seem to be touching it. Cue the fastest moving Tesco electric shopping trolly in the East. How I didn't kill myself, the staff and all the other customers in the store i've no It was a lot of fun but at least we got all of our shopping including another kilo of muscles.

We get home and pretty much have to start straight away preping the mussels. Do any of you know how long it takes to check and clean up 2 kilos of mussels? Nearly 45 mins with icy cold water. By the end of this i've completely had enough and my breathlessness is getting worse (probably more now due to the stress) Aaarrrggghhhhh!!!!

Anyway hubby grabs me a chair an I sit and direct him with what to do (getting everything preped so as mum, Bob and Becky arrive, we can cook them off straight away). Well we didn't have to wait long as the doorbell rang 15 mins later.

The mussels were a roaring success....absolutely delicious. We the settled down to watch our wedding DVD.

I haven't laughed and cried so much. There were suprise interviews on it from my mum and bridesmaids, there were bloopers, there were things that I never even knew were going on and it was wonderful to see.

Come 10.30, mum, Bob and Becky make there way home and hubby helps me to bed.

Will blog more later (and see if I can put a clip of wedding DVD on too)


Wednesday, 18 February 2009

Family Dinners and Project Vix

Well Sunday was the first lie in hubby was to get in about 3 weeks. He didn't get much of one though......nothing to do with me be fore you all think so. He decided to invite my sister and her husband round for Sunday dinner last night BUT as yet, since coming out of hospital, we hadn't been shopping and had nothing in the house.

So whilst I did my Basil Faulty bit, tidying the house (as I just dumped everything when I got back) he nipped off up to Tesco to get in supplies.

Several phonecalls later (and me wishing i'd gone to Tesco as i'm sure I would have got more done that he arrives back and we set to work getting a joint of roast pork into the oven to cook in time for a 1.30 dinner.

My sister, her husband and baby Isabella (8 weeks old) arrived at 1pm and as people with babies do, trashed the house with baby bits from car seats to play mats, change mat to bottles and that doesn't include toys, change bag, baby blanket and zoot suit. How is it that someone so small needs soooooo much She was an absolute darling though and it looks like she's beginning to teethe as she keeps munching on her fingers which is such a funny site.

Anyway, my hubbys roast pork dinner was absolutely yummy. If there is one thing my man can cook it's a roast and there are even left overs for pork sandwiches for tea too....yummmm!

The rest of Sunday was taken up (unfortunately) by rugby and football on the tv so I decided to work a bit more on Project Vix - AKA exercise to increase lung function.

So onto the exercise bike I clamber and begin to cycle.

When I went into hospital, the best I could to on the bike before having to stop was 1 1/2 mins....not good, now I was doing 10 mins straight off, only stopping as hubby couldn't find his phone charger (which was exactly where I told him it was, and where he looked, but could see it...hmmmm men lol).

Chilled out for the evening after doing another 40 mins on the bike and watched Dancing on Ice and Larkrise to Candleford. Had a bit of a chat with the girls on Twitter and then it was (after my last round of meds) off to bed.

Monday saw me getting up at 6.20 AM to get hubby off to work, get mince out of the freezer so at least we'd have something for dinner tonight and start my new job of project Vix for the day (meds, nebs, exercise and physio). Still being fairly new in fitting this all in, including finding the right time when to eat as some meds have to be taken before food, others after, I wasn't ready to face the world until 11am! Surely I can slim line this a bit.

Anyway, as project Vix finishes for the morning, I head over to see my sister and we head into town to have a bit of a mung around the shops.

We met up with my mum and Bob at Costa's where I was very naughty and had a hot choc with cream and chocolate stiring stick which was scrummy then headed off for a little retail therapy to find clothes to fit my bloated steroid body (have gained so much fluid retention from being on steroids that I can't even wear my wedding and engagment rings anymore.....well I wear them on a chain around my neck)

I ended up with 2 pairs of jeans, a pair of combat trousers and 2 t-shirts. Not exactly what I was looking for (looking for nice clothes to wear out in the evening) but they were all a good price and couldn't

I run my sister home and then head home myself for the next round of Project Vix - meds, nebs, physio and exercise bike before making a start on a lasagne for dinner.

Phew - project Vix is turning into a bit of a full time Oh well needs must if i'm to increase my lung function.

Oh and the lasagne was gorgeous even if I do say so

Chat more soon xxx


lol I hadn't noticed the typo Gemma. Mice lasagne doesn't sound that good does
Have corrected it now.

Monday, 16 February 2009

Love, Life and Home

I'm home - Yippee!!!!

Thanks to my lovely brother who did a bit of a detour (was driving to mums from Norfolk so went via Londons west I walk through my front door by 3pm on Friday and it was wonderful. My mum and Bob (her partner) had been round and cleaned the house (hubby had been living as a bit of a bachelor for 2 weeks on takeaways and and my 2 cats were there to greet me. I just sat down on my sofa for a while and enjoyed being back in my own space.

My quiet enjoyment of being home didn't last long though, as the word had obviously gone out that i'd escaped and the phone never stopped ringing.

A few hours later my wonderful husband walked through the door. The look of love, relief and longing written all over his face. I think he missed He tried so hard not to appear down whilst I was in hospital but I knew he was and that he wasn't coping so well but i'm home now.

He said for me to grab my coat as we're going out for dinner (There was no food in the house as he'd not had time to go shopping AND whilst i'd been in hospital i'd been craving food from my favorite Italian restaurant).

I have to admit, after 2 weeks of hospital food (and the Brompton has some of the best hospital food i've tasted) my Italian meal was the best ever. I had Mushrooms in a gorgonzola sauce and veal with spinich in a 4 cheese sauce (guess who's been craving

I love being back in my own bed too. I never sleep very well when not at home and although I still don't think i've fully caught up on all the sleepless nights I had whilst in hospital, i'm definitely getting

Anyway, Valentines day started with a lovely kiss from my husband follow by the most enormous valentines day card. I then noticed how cold the house was. Aaarrrggghhhhh!!!! The boilers had a giddy and not come on. No heat, no hot water and we need to leave the house in 2 hours.

Hubby goes and has words with the boiler, I go and put several layers of dressing gowns, socks, blankets around me and go down stairs to start "my routine" of pills, inhalers, nebs and physio.

Thanks very much to Moonpig, I also managed to arrange for a valentines day card for my hubby which he was totally taken aback by, which also seemed to calm him down afetr his argument with the

Anyway, come 9.15 and only 15 mins late, we left the house to go and pick up some friends to go to the Kent Ideal Homes Exhibition.

We were hoping that there would be lots of kitchen and bathroom people or building companies or companies that do solar or wind power that can be incorporated into a build but there wasn't really. There were 2 small kitchen companies and 1 company that did worktops, the rest were companies selling gadgets and face creams, saucepans and prints.

We had a good look around and somehow managed to spend a silly amount of money on kitchen gadgets and also bought some yummy parmigiano and parma ham and then headed off to get some lunch at a local pub.

We dropped off our friends and headed home so hubby could watch the rugby. As it finished we both ended up running around like headless chickens as we were running late for our Valentines dinner......that and as i'm on steroids at the moment, i'm retaining a lot of water so nothing seems to fit so clothing is an issue).

Anyway, thanks to my trust wrap around dress JUST fitting, we were off.

The restaurant has just been through a complete refurb and it now looks amazing. As we arrived we had a coats taken and shown to our table. I was then presented with a valentines teddy bear (which we've called Alan) at then offered cocktails. The food was out of this world. I had a crab and salmon ravioli in a crab bisque as a starter, hubby had venison carpaccio with figs and rocket. I then had fillet steak with Charlotte potatoes and hubby had calves liver and to finish I had this amazingly rich chocolate and cherries with Kirsch concoction, while hubby had the good old cheese board.

It was delicious.

Anyway going to leave it there as i'm about to head out an see my sister. Will blog again later Bye x

Thursday, 12 February 2009

An end in sight!!!

Well it finally looks like i'm gonna escape the Big Brompton Hospital - TOMORROW!!!!! YAY

Don't get me wrong, they are absolutely amazing here (special shout out though to Charlotte the Physio, Good luck with dissertation, Steve the nurse, thanks for the chinese food and of course Dr. Gyi and Dr Bilton who are just lovely), but there's no place like home.

I managed to cycle, on and off for 1 1/2 on Wednesday and together with the higher dose of dnase helping me to shift the demon "YUCK", i'm hoping my lung function will begin to climb.

I've had another 2 sets of hunt the vein for bloods over the last 2 days. Yesterdays was to look at my infection rates and general bits and bobs and todays was to establish a post level for the Itraconazole I take to ensure that a) i'm absorbing enough of it and b) i'm not doing damage to my liver.

The big ward round finally made it round to me at 4.30 pm on Wednesday and it's been decided that my symptoms are similar to that of an asthmatic as well as my CF issues. So i've now been put on a drug called Singulair. This should stop my airways feeling like the close down when I exercise or when the cold air hits me. Will let you know how I get on with this.

Steve the nurse mentioned on Tuesday night that as it was the night shifts last night on Wednesday, they were gonna celebrate with a chinese and would I like to order some as well. Well after nearly 2 weeks of hospital food (although as hospital food goes this hospital is probably one of the best) there was no hesitation. So as 10 pm last night I tucked into sweet and sour chicken hong kong style and plain chow mein with beansprouts.....YUM!!!!

Again go little sleep last night (think i'm gonna sleep for a week when I get home) so had a pretty lazy morning today. Had it confirmed that I am going home tomorrow and even managed to get pharmacy to sort out all my meds ready for tomorrow so hopefully no waiting.

I now have an exercise and physio plan to help increase my fitness and hopfully lung function too and the dietician has also popped in some info on healthy eating for me.

So, i'm now on countdown with 3 sets of IV's to go until home time and the time is just dragging it always does. My brother has kindly offered to collect me and drive me home as he's passing anyway, which is perfect. Everything just seems to be falling into place.

I want to thank 2 special ladies who have kept me sane whilst i'm been in the BBH by Twittering with me at all hours of the day and night.....THANK YOU Lampie and Sweetheart....will be back on Twitter later for a

Well that's me for now, will chat more later


Tuesday, 10 February 2009

Breathe, Blow, Cycle and Shop!!

Day 11 in the Big Brompton Hospital and Vix is REALLY

While some of the more mundane day to day goings on in hospital life are still.....going on, I have had, all to brief, experiences of the normal world coming to visit me.

On Saturday my wonderful husband came up to visit and we managed to get permission to escape from the ward for a few hours.....which was absolute bliss. He took me shopping in Harrods where we fought our way through the crowds to experience the decadence of the food halls (where I bought a lovely tiger prawn salad for my tea) and then to a yummy Italian restaurant for lunch. I've been craving Italian food since being in hospital So hubby treated me to the most delicious funghi grigliati al gorgonzola and a bruscheetta al pomodoro while hubby had calzone.

All too soon it was time to be back on the ward. Soon after getting back my wonderful hubby had to go (to beat the traffic about to spurt out from the football match down the road at Stamford Bridge) and drive the 90 miles back to our house.

Have to admit I did feel quite down after he left so I want to say thank you to all of you lovey YAYW and Twitter ladies who cheered me up no end.

Sundays rounds of med's, and gerneral chaos began along with a rather delicious cooked breakfast (in hospital...can you believe it) followed by a lovely visit from hubbys parents. They kindly travelled all the way up from Portsmouth to see me and bring me a few bits and bobs i'd forgotten. We had a good old natter and put the world to rights and before we knew it 3hours had passed and they had to go to get their train.

Thought i'd take this opportunity to get a little bit of extra sleep (still being kept awake by the nurses buzzers and a mother/carer (who is staying in the same room as her sick son) who thinks it's ok to talk really lound and laugh and cackle all night) Aaaaarrrrgggghhhhhh!!! So giving up on that idea I settled back to watch some TV to then be told that I'm going to have to pack everything up as i'm changing rooms!! Why? Well the ward is having a refurb and my rooms being done tomorrow. OK, so I start packing. 10 mins in, one of the nurses comes passed and asks what i'm doing (der, what does it look only to be told that i'm NOT moving tonight as there are no privacy blinds on the room i'm moving into (it's been refurbed) so will have to move tomorrow once that's been done. Second Aaaarrrggghhhhhhh!!!! of the day. I basically tidy up everything i've pulled out, sit back and take the rest of Sunday easy.

Monday (still without a good nights sleep) and I've had doc's come round for a review, physio doing several breathing exercises as well as a O2 saturation test (I cycle and they see if you oxygen levels drop too much) the psychiatrist come round for a bit of a counselling session and the nurses, cleaners and food tech's doing what they do but I still haven't moved rooms. So come 4pm I decided to settle back and see if I can pinch a couple of hours sleep. Wrong!! My room is now ready for me to move into AND it's on the opposite side of the hospital. Great. So between me and the poor nurse who drew the short straw, we drag, carry and hoiked my things right around the hospital. En route I bumped into an old CF mate who I met on a previous in-mate stay (Hi Amy) and we had a good old natter and compared health whilst I unpacked.

Hoped with a new room would come new sleeping pattern...even a good night s sleep???

WRONG!!!!! I probably would have done if it wasn't for one thing. There is a really sick patient in the room opposite me and they have their family staying with them (day and night) to the extent that there is a sofa bed in permanent situ there which means they can't close their door. Down side, they enjoy their TV....a lot.....'til 3 am a lot and i've gotta be up a 6!!!

I'm not gonna drone on to much more as not a great deal happened today except for a new piece of kit physio has goven me to help clear the yuck from my chest. It's called a Pari Sole N and basically nebulises warm steam. I have to admit, I do feel better for it. So that together with more bloods, and spirometry has pretty much summed up my days. It's the big ward rounds tomorrow so am keeping everything crossed for an escape date of Friday.....I need my own bed, if nothing

Anyway i'll stop waffling now, thanks for reading....if you still

Chat soon


Saturday, 7 February 2009

Invitation instructions

Just a quick blog tonight but i've had a few ladies (hello torsie, sal and sweetheart85) asking for directions on making my invitations (see pic below) Hope these help.

The basic pocket fold is made out of a large A1 piece of paper (lots of colours in places like hobbycraft). I folded the paper (so the longest sides are horizontal to you) like a bit fan to create several strips (I think I got about 7-8 strips per sheet) and used a ruler to get a really crisp fold. Then used a knife to rough cut out the strips. I then folded each of the sections (remember to include the little lip at the bottom for the envelope and info to sit in) and once folded to shape, cut away the raw edges with a guillotine.

That was probably the biggest part to get right (and straight).

The snowflake pattern was made my getting a snowflake stamp, clear embossing ink and using embossing powder (loads of colours and glitters etc). You stamp the ink on the card, sprinkle the powder on, tap off the excess then you use a heating tool (like a hairdryer but hotter...can get at craft shops too) and fix the powder to the card.

The rest was just printing on my printer in fixing it to card to create a border and some rigidity (you'll need loads of double sided tape.....cheapest I found was the pound shops).

Hope that helps ladies. Good luck with your invitations (would love to see how they turn out)

Chat soon


Friday, 6 February 2009

Sleep, Feet, a Bird and a Twitter

Day 7 in the Big Brompton Hospital and Vix is TIRED!!!!.

Finished my late night IV's fairly early (12.30 am insted of 1 am) so thought that i'd have a better and slightly longer nights sleep (next set of IV's at 6 am). How wrong could I be. I think the nurse call buzzers were going off every 30 mins throughout the night. Just as you'd start to drift of BUZZZZZZZZZZZ!!!! AAAARRRGGGHHHH!!!!! I'm such a light sleeper (i've even taken the clock off of the wall in my room to remove the batteries because of the ticking). By 5 am I gave up the thought of getting any sleep and ended up watching the news channel until IV time.

So I decided to have a PJ day and stay pretty much in or on my bed today. Hmmmm well that was the theory. Between med's, obs, cleaners, food techs, drinks techs, physio's, docs, reflexologist and psych not to mention 8 phone calls from friends and family, sleep has not been an option. I'm just hoping that by tonight i'm going to be soooo tired, I'll sleep through anything.

As for the content of my day well the results of my CT were as expected, Small airway disease....typical with CF so lots of physio and Dnase (a nebulised enzyme) to help improve that. Enter the physios. A mixture of flutter, A D, persussions (clapping on the back) and cyclical breathing was helping all the rubbish in my chest move BUT not just in the right direction. In fact it seemed to be in any other direction but out. So the physio arranged to come back for an afternoon session with a present......which with physios could be good could be

Session 2 and in walks my physio with a green box with wire and tubes hanging out all over the place. After a split second of panic on wondering where he's thinking he's going to be sticking these tubes he reveals that its nothing to worry about and that it's a machine that helps you breath more deeply called a Bird. It is a positive pressure oxygen machine which basically inflates your lungs for you. It is the most odd sensation but quite refreshing actually. Have to admit I do feel a lot better for using it.

My 2 physio sessions were punctuated with a lovely reflexolgy session that lasted abot 40 mins. The lady comes to the Brompton every Friday and offers her services to any patient that wants it (no charge). I've never had it before and usually hate my feet being touched but this was sooo relaxing and my chest felt less tight afterwards....will definitely be having reflexology again.

I've also just got totally swept away with the new Twitter phenomena. It's such a great way to chat and catch up with people and be a little nosey too I So hello any Twitter people who may decide to kindly read my witterings.

Thank you again for your lovely comments (glad to see things are on the up emmy)

Chat again soon


Thursday, 5 February 2009

Another day, another test!!

Just a quick blog tonight.....well it's not as if you do a lot whilst stuck in
Breathing has been a little up and down today.

Went for a CT scan to check out what's going on with my small airways. Should get the results tomorrow. Have also been learning a new physio technique called AD! So far seems promising.

My wonderful husband travelled 90 miles to the hospital (after work) to come and see me...which I really needed. He is my rock and although he could only stay a couple of hours, he cheered me up so much and made me feel better about myself.

I've also had lots of the lovely ladies from the You and Your Wedding forum asking me lots of questions about the wedding invitations I made. Here's the pic again in case any of you want another look. If you have any questions about how I made them, just mail me.

Well that's it for tonight. Chat soon


Wednesday, 4 February 2009

Off to battle again!!!

Oh Boo!!! Just as everything seemed to be going so well (Just got married - 20th Dec, been away on honeymoon, celebrated New Year with good friends, enjoying being an aunty to my sisters new baby daughter, been out to celebrate my bridesmaids birthday AND just starting to get our home extension plans started.....and I've got poorly again.

I'm now up at the Brompton for 2 weeks of IV's, 90 miles away from most of my friends and family aaarrrggghhhh!!! Oh well, thank god for technology. Aparently my small airways are blocking up due to my lungs allergic reaction to a "fungal spore" that occurs naturally in the air called Aspergillus.

On top of that, my veins are really not co-operating and I now have several large purple brusies on each arm from docs and phlebotomists trying to canulate and take bloods from me. Think it could be time for a port.

So, as I now have a few days of doing nothing but putting my feet up, enjoy the delights of daytime TV (Judge Judy, Jeremy Kyle!!!) and having rather large amounts of antibiotics put through my pathetic veins every 6 hours, I'm gonna start designing my kitchen. Any suggestions on good places to look would be much appreciated.

Thank you also for those lovely comments from my fellow bloggers about my jewellery. I love working with silver clay and find it very relaxing. If anyone is thinking of working with it and needs any advise or help, please feel free to contact me.

Chat more soon

Vix x