First Knitting Projects

Last Friday I had outpatients, it went OK. My lung function was fev1 40% fvc 51% and my weight was 56.8kg. The dietitian gave me some long speech about how putting weight on was good and all studies show people with CF who have better weights do better overall, she said the ideal bmi for a female with CF is 22, mine is just over 20, I can't imagine it being 22! I told her I had no plans to loose any weight and wouldn't know how to anyway so she can relax!

I told the Doctor about my aching and bladder problems, he did a few things with my legs and basically has no idea what could be causing these things. My last glucose tolerance test a few months ago was fine so he doesn't think its diabetes. I did a urine sample and I am due my annual bloods so they are doing those next time. Annual bloods is where they take loads of blood and test them for almost everything or so it seems! You need to fast beforehand though so they couldn't be done that day. I had my port flushed and they did take some bloods to test my CRP (measurement of infection) and glucose (sugar levels) to check everything is OK, my port bled back! Yeay! I have also been referred for another bone scan as since my last scan showed some deterioration, they wanted another test done in 6 months.

At the weekend Pete went to Germany for a stag do so I was on my own! I tried to make plans so I wouldn't be alone and bored and so on the Saturday night I went out with one of my friends. We had a really good night but the next day I felt so tired I had to cancel going to the cinema with another friend. I did manage to go to a barbecue at my mums but when I got home and had to rush around to do my physio and get ready for the cinema, I couldn't face it!

I've felt quite crappy all week to be honest, I feel tired and more mucusy than normal. Whenever I go on nights out it always dries up my chest so everything is difficult to shift and makes me tired, people don't believe me and say its just a hangover, but I don't think hangovers last a week! I'm not really sure at the moment if I have something developing or have caught something or if its just repercussions from Saturday or just the weather!! So I'll have to just wait and see.

I missed Pete so much! I'm never letting him go away again haha! He brought me back a fridge magnet and a little yellow soft top mini just like the one we used to have! I miss that car so much!!

On Wednesday we went over to see Freya and I can finally reveal my first knitting projects! I'm glad to see the back of that blanket, things were hectic on Monday as it still wasn't finished and then when I washed it, loads of the stitching needed fixing and I just wanted to chuck the damn thing out of the window! But it looked good in the end and I hope Freya likes it! I also did a cardigan, see pictures below. Freya is lovely and her mum is doing well and looking far too good to say she had a baby a week ago!

Bye Bye Mini

Well she's gone, it was a sad day on Monday as I drove away in my new car and left the Yellow Peril to go to a new owner. I hope you go to a good home my friend xx

Silly Cold!

Well this cold is officially trying to make my life a misery but I’m not going to let it!

It's not like I’m in bed dying or anything, I’m still out and about, but it's limiting me and I don't like being limited. Plus I feel it's dragging me closer and closer to IV's which I am not happy with, it would be OK if IV's were as simple as I have a needle in and have some antibiotics pumped into me for two weeks. However it’s not so simple is it? Its two weeks of pure misery and feeling like poop, and I still feel like I am recovering from the last lot! Surely such aggressive and miserable treatment should be rewarded by weeks of feeling good and having a life? Well I feel my last course of IV's should give me at least 12 good weeks, it owes me that much!

I just have loads of mucus in my throat constantly and it tastes horrible which is making me feel sick. It's dripping and sticking and making my chest crackle. It's causing me to do very loud coughs that make all my veins pop out of my head and makes people feel the need to comment on that I have a bad cough (yes thanks Sherlock), I am spending alot of my time trying not to loosen anything to try not to cough because it just uses so much energy it tires me out! What I do is try store it all until I’m on my own, then just let it all out, and then spend 5 minutes waiting for the spinning in my head and dots in front of my eyes to disappear. The worst thing though is it is just making me tired which makes me in a bad mood, which makes me feel miserable. I am not sleeping well either which is probably contributing, I’m sweating and having freaky dreams, I assume because I am back on the voriconazole.

Anyway the good news is, I have my mini back! Wahoo!!!! They have cleaned it too, yeay! Friday morning was a good morning as she pulled up outside my house and we went for a little drive together, Gemma and mini back together at last! I'm going to be really sad when she goes, I’m not particularly excited about getting my new car because I love my mini so much!

On Friday afternoon I helped my Nana look after my cousins little girl who is two years old. Let’s just say I am now sick of Peppa Pig and Pingu! She’s lovely though and it was good fun! On Monday we had to take Alfie to the vets, he couldn't walk and was whimpering in pain. It meant I had to miss yoga damn it! She thinks he has hurt his back so gave him an injection for the pain and he did limp around for a few more days but now he is back to his normal self. He needs to realise how small he is and stop jumping off everything, no matter how big it is!

On Saturday night I had to cancel seeing my friends which was disappointing. They were going into town which I had said I couldn't do as I want to reserve myself for London, however they were going to come to mine first before going into town. However I was really tried after working at the shop and the dogs had been on their own all day (looking after Murphy too) so I had to take them for a walk, then cook tea and get a bath and do physio. Alfie was sick everywhere from excitement when I got home and then got poo on his paw on our walk so he had to have bath just adding to my list of things to do, least he is only small! Pete was out so I had no help and I was just exhausted so had to cancel, I just couldn't get everything done by the time they arrived and then sit and talk for a few hours, just wanted to turn into a vegetable in front of the TV!

I am so excited about our trip to London, I have planned what we are doing each day and bought a little map of London and the tube so I can plan how we will get to each place. I'm going to be so tired when we get back, but I don't even care, it will be worth it!

Must Be Feeling Good!

Well my hair is looking abit better so I'm not sure what I am going to do yet. I basically put some conditioner on it and left it on for about 2 hours with a shower cap on to try retain some of the heat and also so it didn't dribble down my face! I might try having it done with blonde colour rather than bleach next time and if its still as dry as straw then move onto the brown.

My mini has gone for repairing (sob!) and my courtesy car is a new corsa, its very slow, I can't wait to get my mini back! I can't zoom around in this slug! Although I must admit it was handy when we went food shopping on Sunday, we actually fitted all our shopping in the boot. It's a miracle! Usually most of the shopping has to go on the back seat, it's a pain to say the least.

I seem to have been very busy lately but I can't tell you doing what. This is a sign my health must be quite good at the moment, I'm just busy having a life! I went to the pub with my friends on Wednesday night and I went swimming on Thursday, been taking Alfie on walks, went to the cinema on Friday with Pete to see Inception which was a very good film. Then went out on Saturday night into town which was a good night. Had abit of a problem walking between the bars as it was uphill, but I survived! We usually just go to one bar, but went into town earlier this time so went to a few. I will not be doing that in winter though, I do not like hacking my guts up thank you very much!

I got in at about 2am and ate my subway sandwich in the living room, the reason I do this is that everytime I go out I forget to take some nutrizym with me and suffer the next day, so now I save my sandwich and eat it when I get home. I then did my tobi nebuliser which I was debated whether to do whilst eating my sandwich, seriously I had a full on debate in my head about the pros and cons of doing my tobi nebuliser.

The pros were - I wouldn't feel guilty for missing a dose, its good not to miss a dose, I could brag on my blog about how compliant I am, it means I can put off having to brush my teeth, wash my face etc for another 10 minutes. The cons - Its going to take forever because I'm drunk and can't breathe in for long periods of time when I drunk, it's going to be forever until I get to bed because I need to brush my teeth and wash my face etc yet and I'm SO tired, it might make me sick, does it really matter if I miss one dose?!

So there we go that's what I thought whilst eating my sandwich, along with 'yum this sandwich was worth the wait!' and 'I wish Alfie and Murphy would stop looking at me like that to try get some of my sandwich!' and 'these shoes that were supposed to be comfy were SO not comfy, my feet hurt'.

Last week I ran out of my nutrizym 10 tablets which was very silly of me. I was having my breakfast and my pot was empty so went to my cupboard and the cupboard was bare!! Luckily I had a small supply in my bag (I have a little tablet holder I take around with me) but that was it! I rang my local chemist, they are the best chemist ever, they are so helpful and have more than once given me the correct tablets when the GP has written me for the wrong ones. Luckily they had a pot of Nutrizym in stock, which was very lucky indeed, it's not a commonly used tablet as you can imagine and they usually have to order them in for me. They agreed to lend me a pot until I got a prescription from my GP's, which takes 2 working days. Panic over! I swear if I couldn't get any, I would have just not eaten until I got some. The pain I would have endured for eating and not digesting my food would have not been worth it! Oh and the smells coming from the bathroom would have had Pete begging me to stop eating! haha!

Reflections

I've had a very busy week, in fact I haven't even unpacked my suitcase yet which is so unlike me!

On Monday I ordered my new car, I've gone for the new Astra, pertol SRI in the colour waterworld which is a darkish blue colour. Not very interesting compared to yellow which is what I currently have, but it appears vauxhall don't like doing fun colours!

I also had to ring my insurance company because my numpty husband reversed the mini into the McDonalds drive through window on Saturday night/Sunday morning when we got back from our holiday! There was no damage to McDonalds but I can't say the same for my car! The car is still drivable but all the back right side of the car is mashed in and the light is smashed, the light is still working though. It's not even funny really, we have rear parking sensors for goodness sake! Luckily the excess is alot lower now we are 25 but it means I won't get my £200 bonus when I return the car (if you don't claim on your insurance and the car isn't damaged they reward you). Can't complain though as at least I don't have to worry about my insurance going up etc and when they collect my car next Wednesday I will get a courtesy car, I don't like driving around with a bump in my car and people thinking I'm a bad driver, it wasn't me!...!

On Monday the lady from Scope where I volunteer came around to see me as I had agreed to help them interview for two posts for a new project commencing in the Halifax area, basically doing what our project does now. The interviews were on Tuesday and Wednesday and she just wanted to show me the questions, explain what would happen etc. It was quite fun interviewing people, there are some weird people out there who have some very strange opinions on disability. One thing which surprised me was how many people think disabled people think the barriers they face are taught to them and actually more in their head than actually existing and apart from physical barriers such as there not being a ramp, they didn't have a clue of other types of barriers. One comment which we all couldn't believe and actually had me in a fit of laughter and coughing fit ,(afterwards of course, we all kept very serious during the interview) was clearly disciminatory against wheelchair users, which is a great way to come across if you are applying for a job to work for a charity that believes in equality...!

The two days tired me out completely, we got takeaway on Wednesday night as I was too tired to cook and Pete didn't get home till late. I got quite upset actually because A) I was very tired and B) I had been interviewing people for a job I would actually quite like to do myself and was so angry it was clear I'd never be able to do it as I was exhausted from just interviewing for the job. This set me in very bad mood the next day when I was helping out at my mums barber shop which I wish I hadn't had to do as I was so tired. Plus I was majorly pissed off I have somehow ended up cutting people's hair which is not really what I had in mind as a career path years ago and it's not really my passion. Luckily the shop was quiet which is what I had counted on and I spent alot of the day reading my book. The past few days have just made me feel deflated, I've had an insight into what I could do if my health was better and an insight into what I actually do. I usually accept that this is my life now and the most of the time I am happy with it, loads of people end up doing things differently to what they thought and I am not miserable how my life has turned out. I know I am very lucky my mum owns a business that means I can just help out a few hours a week and it's pretty easy going when it's not busy, however sometimes I still wish I did have another life, well not another life as I quite like my life in general, just a better body!

Today I am just resting, I'm so tired I'm just going to take it easy. I have a few things I need to do like unpack my suitcase (finally!) and I haven't been to the gym yet this week as I have been far too tired so I might try go swimming later but somehow I doubt I will! In a way this week has been good for me too, I have been so tired from my busy days I have really struggled to force myself to do my physio/nebs and like I say I haven't been to the gym. So in a way it has also reminded me why I did give up work. I couldn't do this every week. Poor Pete has put up with my little physio tantrums 'I'm not doing it!' 'I'm sick of doing physio, it's all I ever do!' seriously, I'm like a little kid when I'm tired! So in a way this week has helped me reflect on a few things, good and bad.

Arghhh Matey!

It feels so good to be getting back to living and enjoying myself, when you are on IVs and they are making you feel so emotional and rubbish, its difficult to see any light at the end of the tunnel. Yes I know in a few months it will all happen again, I'm not like other non-CF people, it's not a one off, it's something that happens regularly. However the months in between make it worthwhile, the few weeks after when I know I'm free and I don't have to go back to outpatients for awhile. I can just be me and enjoy life!

I often say people with CF appreciate life more and people ask me what I mean by that, how do they appreciate it more? Well because we have to work so bloody hard for it! On Saturday I had to do my last dose of IVs, then work at my mums shop for a few hours, then go get my needle taken out, then get home and get a proper shower for the first time in 2 weeks. So yes that shower was amazing and I am sure I appreciated that shower alot more then anyone else appreciates a shower! Then I had to get ready and do my physio and nebuliser before going out. So yes I think I do think I appreciated that night out more than others, I haven't been out for three weeks, I've felt like crap and it felt so good to be partying!

I went to my cousins house party and it was a pirates and princesses party so naturally I dressed as a pirate! It was another friends birthday and she was in town so after midnight I rounded some people up and went into town to see her but I only saw her for a few minutes. After a few hours my friends wanted to go home so I went back to my cousins party. I mean can you believe that? I probably still had strong antibiotics in my system and drank rather alot, but I wasn't ready to call it a night yet! So yes I think I do make the most of things when I have the energy to do so! I'd just like to point out the idiot bouncer who thought it was extremely funny inspecting my firearm (I had a fake pirate gun), they really need to get out more!

Tell you what, I had a banging hangover on Sunday but it was nothing compared to how I felt on that first week of IVs! Ah the joys of a simple hangover...!

I had my flight test today. I explained what happens in a flight test in this blog entry so won't bother going through it again. My sats fell to 88%! This is not good, I was borderline at 90% last year so I have no idea what this means. I am guessing it means I might need oxygen even on a short haul flight that is less that 2 hours long. I am going to call the hospital tomorrow so that if I do need oxygen I have the documents to take with me on Wednesday to get the doctor to sign to get it sorted asap. I am not impressed, is this a sign my health is worsening?

I have received a letter through the post saying I need to start looking for a new car as my motability car will be getting replaced in September. No I do not get a FREE car as people always like to point out I do, 'oh it must be nice to get a free new car every three years', yeah well it must be nice to have a healthy body arsehole! I get money taken out of my benefits for the car, so it is not free atall, I think I lose about £50 a week in benefits to have the car, so no it's not free atall, it's not like my benefits make me a millionaire as it is. Plus alot of the cars, you have to pay an advancement fee, when you collect it. So yes I do feel lucky I live in a country where I can receive help with transport, but no it's not free and I'd much rather not have CF!!

I'll be quite sad to see my mini go, I can't afford another soft top car and I need something bigger really. I'll miss driving down the motorway with the roof down and my favourite tunes blasting out. There really is something great about going fast and wind isn't there? I imagine running might feel abit like that if you were a good runner, kind of like you are free and invincible, or riding fast on a horse! On the way back from the hospital today I went past my junction and carried on to the next then turned and came back just to stay on there abit longer because it's so good!

Feeling Sticky!

Last week I think I might have had a virus or cold or something, not really sure. I find it difficult to tell what is CF related and what is not. My nose was runny but not completely blocked so I don't know if that was sign of a cold or just my sinuses as I have been getting headaches almost everyday, but again this could be because of a cold. It's probably abit of both as one is bound to affect the other. This has been dripping down the back of my throat and it's made me more productive than normal and my sputum has been very sticky. Infact on Sunday when I woke up, I went to spit some in the sink and it was just hanging out of my mouth as it was so sticky it was still sticking to my throat. It started to make me gag and I thought I was going to be sick! I had to pull it out with my fingers, lovely! This could have been made worse because I went out the night before so was I probably dehydrated!

Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!

Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!

I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!

I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!

On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!

My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!

My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.

Here are some pictures from Saturday night and a video

Me and the birthday boy!

I'm so cool.....!

Come on little brother, give your big sis a hug!
So childish, messing about with Helium

Bump

I had a little incident with my car yesterday, in that someone reversed into it! Thankfully my car is fine, I'm not sure about hers, I didn't care since it was her fault!

I'd just had my blood taken at the GP's and had reversed out of my car parking space, was putting my car into gear to move away and my rear beepers started going off which I couldn't understand as my car was not moving so how could I be getting closer to something? Then I realised a car was reversing into mine, but it was too late and there was a little bump. I got out and the other woman got out and started shouting at this other woman in her car! This other woman had been parked in the middle of the carpark, obviously waiting for someone to drop something off so not bothering to park properly. When I got in my car she was in the way of mine and moved when she saw I wanted to leave. I didn't really see a problem, but to be fair I wouldn't have done what she was doing as its a busy carpark and she was in the way wherever she stayed.

Anyway the woman who had bumped into me was shouting at her saying it was her fault... erm no I don't think it was. The shouting woman had a cigarette in her mouth and I get the feeling the reason she bumped into me is that she was too busy lighting up rather than looking in her mirror, silly woman! Excellent example of blaming someone else when you know it's your fault!

Anyway like I say, my car was fine so I went on my way. Perhaps I should have given her a telling off, I dunno. She looked pretty scary so I wasn't sticking around!

Muddy Weather

Gosh I can't believe I haven't done a blog since Monday, I've been informed this by several people. Calm down....! I just don't have anything interesting to say!

I have been adding some pages to my blog, if you look along the top I now have my blog page, a CF and Me page and a CF Glossary page. So take a look and see what you think! I'll add some more when I think of what I could add!

Like I say, I haven't been upto much this week. I have been feeling more and more tired each day, not sleepy tired, more like feeling weak tired. Overall I feel good though, it's just annoying as I don't have any energy to do anything.

On Friday my mini had a service and I went to a relaxation class at where I volunteer, it was good but alot of it I already do in yoga, so it was a case of reinforcing what I already practice in classes and perhaps extending it to at home. My mini was fine apart from needing some new window wipers, they cleaned the outside of the car but not the inside which I was abit disappointed about. Last time it looked brand new by the time they had finished with it! The inside of my mini is disgusting, so I decided I would clean it. Yes you read right, I cleaned out my car, I'd like to point out it was chucking it down with rain too and I still proceeded with this little miracle. I cleaned with soap and water, then vacuumed it and when I got back into my flat I felt like I was going to pass out and had to lay down. My arms were so weak I couldn't pick anything up, it was very strange! I basically laid down for the rest of the afternoon and had a kip!

I wish this wet weather would go away, I nearly slipped into a load of mud on Wednesday when walking Alfie and Murphy, it would have been funny as a spectator but not for me! Then on Thursday my friend and I took them for a walk and ended up with two very muddy dogs. I then had the lovely job of rubbing them down with a towel (I'm very organised!) before putting them in the car, I did Alfie first and put him in the car, then whilst I was doing Murphy I felt something jumping at my leg and it was Alfie! Somehow he had managed to jump out of the car and was wandering around the car park! Luckily he was very good and did not run away! Then I had to give them both a bath when I got home and put up with them running around afterwards like crazy dogs, rubbing against everything. So yes I'd like it if the mud went away please!

I have a new game on my laptop that I'm addicted to. It's called Caeser III, I used to play on it when I was a teenager and decided to order a version that works on Windows Vista for £4! It's just as good as I remember! You basically build and run a roman city and get promoted etc. It's good to know I still like a game I liked about 10 years ago, sometimes I feel like I'm a different person to who I used to be, I feel like I have changed so much in the past 3 or 4 years, so a little link to the past is nice.

White Winter

It snowed quite heavily yesterday although nothing compared to Scotland I believe, I think we got about 20cm of snow. It took us 2 hours to get to my mums, it usually takes about 15 minutes! The main roads out of where I live had not been gritted, infact the gritter went past after we had queued on a road for over half an hour at 9am, too late if you ask me! The reason for the queue is that at the end of a road there is a slope and basically people couldn't get up it, there were loads parked on the side that had given in. Pete and I got quite worried as because the traffic was so slow we kept having to start and stop, not great when you know your car is going to struggle! We did manage it but only just! Go mini!!!! The motorway was fine, but that's no good if it takes an hour to get onto it!

Because it took so long to get to my mums we then stayed there all day, Pete couldn't go do his jury service (he's not actually been assigned to a case yet so wasn't necessary he went in) as all trains were cancelled so we played on band hero and had a roast. Good times!

The snow is providing some fun for Alfie, it is up to his chin and there are all these trails in the garden where he has been which he now uses to get around. I've videoed it for you, I can't upload it for some reason so put it on youtube, click here to watch it. I don't know how to add youtube videos onto my blog properly, someone please teach me!

Edit - thanks Tori! xx

Signing off for Christmas

This is going to be my last blog before Christmas, So I wish you all a very Merry Christmas and hope Santa stops by your house!

On Sunday Pete and I took Alfie for a walk in the snow whilst it was still coming down, there were people having a snowball fight in the middle of town and everywhere was just covered, it was so Christmassy! Alfie doesn't mind the snow as long as he has his coat on to keep him warm, he was jumping around in it and sniffing it. Pete and I wrapped up well, I even put a pair of tights on underneath my jeans, so we were nice and warm too.

We went to a Christmas carol service at the church on Sunday afternoon, it wasn't in the actual church but at the centre next door. The church gets extremely cold and in winter they only hold the big services in there. Not many people turned up, probably due to the snow and the pianist wasn't there either! You try singing songs you don't know with no music! She turned up just in time for the Christmas songs (we sang some advent songs first) and it was nice to sing some carols. We also had some mulled wine and cakes etc. Pete and I are planning to go the afternoon service on Christmas Eve, the main service is at 11pm but we will be at my nana's party then.

We finally have our wedding album so I have been lugging that around with me (it's very heavy!). I took it to the caroling service on Sunday to show my Nana, Aunty, Cousin and others, and then I took it with me to the hospital on Monday to show as all the staff as they keep asking me about it.

The news from my hospital visit is good! My fev1 is upto 43% so that's an 12% increase in about 3 weeks, my fvc was also up about 400mls which according to the physio mean my lungs can hold just over an extra cans worth of air, that's pretty impressive! My weight is also up to 54kgs although both the dietitian and I agreed this may all be poo because I am constipated.......!! I do think I have put some on though, well I hope, to get her off my back!

So my plan of action is to come off the skandishakes until my constipation is sorted and then go back on them and only take 2 nutrizym instead of 3 or 4. I have to take 3 movicols a day to get things shifting...! If it happens again she will try me on a different calorie shake.

I told the doctor and physio I am tired of my lung function dropping every time I come off the voriconazole and then going through the motions of going on IVs, them not helping then finally going on voriconazole, so it taking weeks before I feel better. The physio explained they have to try other things first that are less toxic as they have patients in their 40-50's who are now having problems from the toxic medications and she says they plan on treating me for many decades to come (which is nice to know!). I am staying on the voriconazole for 2 more months as long as I can cope with the side effects which I said I am willing to do. We looked the side effects up and apparently messing with blood sugars is one of the side effects, also there is dizziness and vision distortion. I then have to come off the voriconazole for a month and then go back on it for a month and keep that cycle to see if it keeps me stable. I wish they could just give the fungus' a good blast and get rid if them completely but I know they can't as the fungus' have taken over too much.

On Monday night, Pete and I got stuck at the bottom of a hill after trying to go visit my Nana who wasn't even in! To rub it in a golf VW drove up the hill no problems whilst we sat there waiting for my dad to come and rescue us. My dad drove the car and Pete pushed and got it up fine, so when we went back later we just parked at the top of the hill and walked down, it was not much fun walking back up but I lived...!

Evilness of the Chest

Lidl is ace!

I just went to get a few bits and bobs and it only came to £5 and a few pence.

I got:

Some garlic and coriander nan breads

Tikka Massalla Sauce

Onion Bahjis and Samosas (guess what we are having for tea tonight...?)

Kingsmill bread

Pitta breads

Spready cheese

chicken with herbs (for in sandwiches)

Not bad ey?!

My chest is been an arse this week and that's me been nice. I keep getting pains, then my lung felt like it had unstuck its self from my rib when I was driving Wednesday morning, it was not pleasant and it hurt. When I lay in bed it feels like there is a weight on my chest and then today I have been finding it harder to breathe. I'm not gasping for breath or anything but I am aware of my breathing which is always a sign I am struggling abit and feel like I've just done something to make me catch me breath when infact I am sat doing nothing atall. I have even had to put my acapella on a lower resistance as I can't seem to blow into it hard enough, I've lost my puff!! Nooo!!

So anyway I have done some salbutamol through my I-neb, I kind of guessed how much I needed. I estimated half of the neb as that's how much you use for dnase and tobi and its how much salbutamol I used to use when I mixed it with promixin. I did it though my chamber I use for dnase. Anyway now I feel all shaky as it tends to do that, and my chest feels no different. So load of good that was!

It could be the weather, or maybe my chest is recovering from all the walking when we were in London plus I did get very warm. I am also blaming myself because I didn't do my physio or nebs on Monday night as we didn't get home until half 10 and I was way too tired and just went to bed. But surely missing one lot isn't going to make a massive difference?!

I am also coughing up sticky sputum, the kind that hangs from your mouth as half of it is still stuck in your throat. Yes it is lovely.... and I seem to be spending alot of time over the kitchen sink! I'm not calling my cf team, I shall see how it goes over the weekend. I have a feeling this will pass so not going to kick up a fuss, I'm sure I shall live!

Anyway putting all this aside I decided to go swimming this morning since I have not been in awhile, I have been abit naughty with my exercise regime the past few weeks. The first few laps I usually struggle then I'm ok, today it took about 15 laps before I stopped coughing my guts up, I was seriously ready to give in. At least people kept out of my way in the pool which can only be a good thing! I managed 24 laps in the end which wasn't bad.

I've not really done much this week, just been sat in the front room appreciating the rays! I did go cruising with my roof down to JTF which is this wholesalers. I bought some photo frames as I am putting some photos up of Henry and his wives (that I got on my trip) above Alfie's basket, Alfie is a big fan too.....!! hehe. I bought a few other bits and bobs, its one of those places you go and buy stuff you didn't even realise you needed. For example I bought some marshmallows, who knew I would need some of those? I have been doing quite alot of napping too, I blame the heat! Not that I'm moaning about it, I love the sun. Its cheers everyone up! Don't be thinking I'm lazy though, I did a load of cleaning yesterday!

Here's a picture of my mini in her element i.e. with the roof down. Isn't she pretty? :o)

I doing my presentation on Monday about CF, wish me luck! I'm very nervous!

Flight Test part 2

Well I received a nice letter this morning informing me I needed to call the doctor as my flight test was borderline. My oxygen level in the blood sample fell from 9.5 to 7.1, a value of less than 6.6 means you definitely need oxygen and between 6.6 and 7.4 means borderline. He said it would depend on if my flight was long haul or short haul to whether I would need oxygen.
Since I am going to Thailand I wasn't holding much hope!
So it turns out the lady lied at the flight test, she said I'd be fine. Peh!

I have contacted Emirates and oxygen is free (I checked this before we booked just incase), they have sent me a form to fill in which I have to send back a month before we fly. The form looks abit complicated! There is a part the doctor has to fill in so I'll take it to outpatients next week.

I guess there are positives and negatives to needing oxygen:
+We will get to sit at the front so have extra legroon
+I will get my own air supply so less likely to breathe in any bugs etc in the air
+I will feel more refreshed and less tired at the end of the flight
+The air attendants might be extra nice to me
-I wont exactly look sexy at the start of our honeymoon
-I have never needed oxygen before in my whole life so have no idea how anything works
-Its an extra worry when checking in etc

I have felt abit groggy these past few days. On Tuesday morning I felt randomly sick and thought I might pass out, I laid down for half and hour and it went away. How random!
Then yesterday I developed a headache which seems to have carried on into today, not very impressed!
The physio three times a day hasn't really worked out, my sputum also seemed to get better so I didn't bother trying to pursue it. However it now seems to be all thick again, oh joy!

The front tyres on my car seem to be going bald so I took the car to Kwik Fit yesterday, they have ordered me in some new ones and are going to call me when they get them in. On motability you get 2 free tyre replacements and you have to take the car to Kwik Fit to get them replaced. I always get nervous going as I think they are going to think I'm an idiot, but i think I sounded like I knew what I was talking about yesterday. The guy seemed to take me seriously anyway!

Its arrived....drums please!!

I've had a good weekend, probably like everyone due to the fabulous weather!

Saturday night Pete and I stayed in, we watched Seven pounds with Will Smith in (who I swear gets more hunky by the day). It made us both cry although Pete said he had hayfever and only cried because I did! I think they did quite well with the whole transplant issue, for a start I think it was good the way they portrayed the woman as needing a transplant but not looking like she is about the keel over any minute which is how people always expect people needing transplants to appear. I wasn't sure about the bit where they told her she was going on the list, they were kind of like 'here's a beeper, good luck'!!!, I would hope they give you abit more information than that! I won't say anymore anyway as don't want to ruin it for those of you that haven't seen it! I'll just mention that even though I have labelled this post with lung transplant the film is not actually about lung transplant, it just fits in with my categories thats all!

On Sunday we went over to a bbq Pete's parents were hosting, it was a nice day as you know! So we drove over with the roof down on the car. I put my cardigan over my hair like a scarf as it blows everywhere when the car goes fast! I looked an idiot but do I really care?!

Today I have done some weeding in the garden, those pesky buggers! I've sat indoors the rest of the time, I don't want to get sunburnt!

I am quite liking doing these videos on moviemaker, now I'm getting abit more skilled (if you can call it that). Here's a video I thought might tickle some of your fancies since I know you all like Alfie more than me!

Here it is..... drums please!!!!

The Lakes

Hello!

I've had a great bank holiday, Pete, Alfie and I went to the lake district!

We stayed in a B&B in Ambleside, we were supposed to stay in Pete's parents house up there but it currently has no working kitchen or heating so they kindly paid for us to stay in the B&B. We stayed for two nights and the weather was gorgeous, after last weeks rain I was worried and even went and purchased a raincoat on Friday but I didn't need it in the end!

You would think a person with cf would not want to go to the lake district as it involves walking which is not our forte but I actually quite like it. You are walking for pleasure and have all the appropriate footwear etc and you can choose a nice route with no hills which are our mortal enemies! Obviously there will be a few slopes in places but I can cope with that as long as I get to catch my breathe! Also completing a walk makes me feel quite good about myself and reminds me my body is not totally useless! On Sunday we walked for about 4 hours and did about 5 miles, which I was very proud of!! We walked along the river Esk, its a good walk, quite flat and lots to see. I felt a great sense of achievement at the end.

Because it was sunny we had the roof down in the car and spent alot of time driving around admiring the scenery, just what soft tops were made for! I think this is a sign I am getting old, when I start to appreciate scenery!

Alfie was very naughty at one point and chased after a load of sheep, Pete had to run through two fields after him, if it had just been Alfie and I, I think Alfie would had regretted his actions as there was noway I could have run that far! However Alfie made up for his blip by been very good in the hotel room regarding needing the toilet. He was like a little celebrity in the hotel as everyone kept looking at him and making squealing noises when they saw him, that's the problem with having a chihuahua, they attract attention and chihuahuas don't like getting attention, screaming people scare them. Its a problem! He shouldn't be so damn cute!

We got back last night and were all exhausted so had a nice takeaway curry for tea! On a positive note I am feeling so much better, I think the exercise and perhaps cleaner air? has helped me feel better and I'm feeling so much better than last week, I'm sure the antibiotics have helped too. Hopefully I won't need IVs afterall!! I'm so glad I had a good weekend because to be honest I was dreading it with how I was feeling last week and was thinking of suggesting we cancel but I persevered and it seems to have paid off!

Alfie having a rest! Shame I couldn't fit in there!

A tiny bit emotional

On Saturday Pete and I were supposed to be going to the cinema to see the Young Victoria, instead we ended up dog sitting and watching The Departed on dvd. Why? Because both the stupid cinemas have decided they are only showing the Young Victoria on Mondays and Tuesdays and the other film we were willing to go see instead (Knowing) was on at either 7pm which was too early or 9.30pm which is too late, at both the cineworlds close to us. The 7pm was too early as I worked at my mums shop and so didn't get home till about 5pm and I needed to have a little rest, get a bath, have physio, do tea etc. Helping out at my mums shop is going to become a regular thing as I can manage a few hours, I'm allowed to do it and still get my incapacity benefit, I won't get bored just sitting at home and going out of my mind and of course my mummy is flexible and won't be like a proper boss :o)

So anyway I was annoyed about the cinema thing as I was really looking forward to it and I wanted to keep my mind busy with Louis passing away. It's not like I knew him really well or anything, but it's abit scary when someone you have spoken to suddenly dies, it reminds you how it can just happen, it's upsetting and you have no control over it and it's just heartbreaking to know a nice, young person has passed away. It could have been so different if he had got his transplant! So anyway I was miserable and fed up and I started crying for no reason and once I started I couldn't stop, I'm abit emotional at the moment, that time of the month and everything... Sometimes you just got to let it out! Pete asked me a few times what was wrong and I said I didn't know so then he just left it and stroked me because he knows I like it :o)

On Sunday we went to this warehouse place called JTF and we put the roof down on the car because it was sunny. However not sunny enough, I was freezing my arse off when we were on the motorway! We looked in the wedding bit for ideas and bought some stuff for Alfie, including a new box thing for him to sit in, in the car and a travel water bowl (70p, bargain!). We also bought a new mop incase your interested....
My cousin and friend came around in the evening to arrange the hen nights, remember I am having two! Booked travelodge for both of them, bargains!

I have been asked to do some training on cf at Scope where I volunteer, I feel quite proud I've been asked and appreciate the opportunity however.... I'm still thinking about whether I am brave enough to do it, as I'm abit of a wuss when it comes to speaking to a group of people! I don't know why, because when I was at uni I did it all the time for the law part of my degree, we had to moot, where you stand up and put your case forward for your client etc. Telling people about cf is way more scarier though! I've been thinking about what I could do and so far I have thought I could (not in this order):

-Get people to say what they think know about cf, more out of interest for me lol, but also to show it is an unseen disability and so people tend to know little about it
-Do a day in the life of me kind of thing with acapella to show etc
-Display the variations in cf (if you know one person with cf you don't know us all!) by showing different examples of people I know with cf (if you guys would let me obviously!)
-A picture of me with arrows showing all the ways cf can affect a person
-Explain the genetic side of cf
-Abit about transplant
-Go through problems/obstacles people with cf may have and how a mentor may be able to help them (afterall this is training for people who want to mentor others)

Speaking of Scope, I saw my mentee this morning and we had abit of beauty session. I did her hair, make up and nails, it was good fun! I don't really say much about my mentee or voluntary work as it is all confidential but I think I'm allowed to disclose we had a fun pampering morning. I never use my ghd's so it's nice to actually put them to some use!

Fun but exhausting weekend

Firstly I'd just like to say get well soon to one of my friends Vicky who is not doing so well at the moment, I hope you get well soon honey even if it means you have to stay in hospital for Christmas! She's a little fighter so I know she will be fine, she's on oxygen etc though so it's pretty scary, so please keep your fingers crossed for her.

I've not been feeling great myself but nothing compared to other people. I had a pretty busy week last week and didn't really get any lie ins which means I didn't get as much sleep as I need, this mixed with been on the go alot has left me feeling pretty exhausted. On Friday I went to the cinema with a friend from my old job who i haven't seen for awhile so it was good to catch up. We saw Changeling with Angelina Jolie in, I would highly recommend it, it almost had me in tears in parts and to know its based on a true story is terrible. I had my usual popcorn combo and so was satisfied with the evening as a whole :o). The film didn't finish until about 11.15 pm and it was so foggy driving home, it was pretty scary as I couldn't see at all where I was going! I didn't get to bed till about 12 because of nebs etc.

I then went to a body shop party on Saturday at my cousins so had a quick nap before I went (which meant I was late), I drank abit too much and spent too much money lol, my cousin and I went to the pub after to meet our fellas and drank abit too much more.... When I got home we watched abit of the x factor whilst I did my tobi nebuliser and I realised I had no re hydration sachets which wasn't very good as they are my saviour to prevent hang overs!

The next morning I couldn't even have a proper lie in as for some stupid reason I agreed to take the dogs for a walk with my cousin (I must have suggested this when in my drunken state) whilst the boys went to watch the football. So I had to do that and then go out for lunch with my friends which I arranged last week. So anyway by Sunday afternoon I was knackered and extremely grumpy, Pete got most of the wrath of tired Gemma to which I apologised to him the next day, he says I wasn't grumpy atall, I know he's lying...

So anyway Monday I had a nice big lie in and didn't get dressed till after lunch time. I did go swimming and did abit of vacuuming up, but that's about it. My lesson for the week is not to do so much, but it's so difficult when all these things are going on that you want to do, especially near Christmas!!

The acapella and I are not getting on so well, it hurts my cheeks! Because of the resistance I have to hold my cheeks in so they don't puff out and they are really aching and I actually have jaw ache today. I think it's also making me get a dry throat and so it's abit sore, or I'm getting a cold or coughing too much in the cold, who knows which is the cause?! So I have used the pep mask this evening and decided I need to ease the acapella in rather than dive straight in to using it all the time.

I nearly crashed my car this morning because of the ice! I reversed out of the parking space and then the car started sliding towards the other parked cars as its on a slope! I just sat there pressing my brakes wondering what the heck to do! So I put my foot down on the accelerator and there was loads of smoke coming from the back of my car and the car was not moving and then eventually it shot off, phew!!

don't drive your car over a bolt....

Well on Friday I went out for some tea and a few drinks, and on Saturday night Pete says he read someone got arrested there because of a car chase and there were forensics there and stuff, I knew I should have gone on Saturday!!

On Sunday I sent to a wedding fayre, which is basically loads of stalls with People trying to get you to use them for your wedding. We were looking for a photographer and spoke to a few. I was expecting some free champagne but didn't get any which was abit disappointing! I got a free magazine but it's not the same!

We then went food shopping and when we went back to the car the AA guy that was selling breakdown recovery outside informed us we had a bolt in our tyre. I thought he meant we had been clamped because I had forgotten to put my disabled sticker out (which I hadn't)! But no, he meant that a big bolt was stuck in my back wheel. Why he was looking at the wheel I don't know, but nevermind, I would have never noticed it if he had never mentioned it!

I then spent the afternoon sleeping (my speciality) and then cooked a roast, although i'll admit we bought a ready cooked chicken, but I made the roast potatoes myself! It was very nice, Alfie enjoyed the chicken too as Pete 'accidentally' dropped some on the floor. There was a special offer on hagen dazs icecream, so I had half a tub of that and didn't even feel guilty about it because I can eat whatever I want and don't get fat. yeay! I shall finish the other half when I have finished this blog.

I took my tyre to be fixed today, I took it to kwik fit and it only took them 10 minutes. They didn't even ask to see anything to check I was a motability customer (getting the tyres fixed is covered by motability), they said they trusted me. I must have a genuine face..... :o) I was abit scared going there as I always feel abit stupid when it comes to cars and bunches of mechanics scare me! They were asking me if I have run flat tyres and where my wheel key was or something, I just played dumb. No, ok there was no playing, I am just dumb when it comes to my car.... I know how to drive it and put petrol in and thats about it.

busy old me

Well I have been rather busy over the past few days.

Sunday, Pete and I went to choose our weddings rings, abit early I know but we had a money off voucher from when Pete bought the engagement ring, so we wanted to use it before it ran out. Got to save the pennies! We then went to a bbq in the evening at my parents friends. I was planning to drive home but ended up drinking quite abit and leaving the car there and collecting it the next day. I dont know how these things happen....! I ended up wearing a padded sumo outfit and fighting with my brother (also in a sumo outfit) on a mat outside in the garden (the hostess of this party likes to set up unusual things at her parties), he kicked my arse, he knocked me over and I couldnt get up because the outfit was so heavy plus I was laughing so much I was coughing my guts up. I actually nearly passed out from been so out of breath but it was so funny I didnt care. He rolled me off the mat and then the second time he grabbed my foot and pulled me off, the third time I think he didnt even bother knocking me over, I think I just fell over by myself! Then Pete and I ended up dancing for ages in the front room, at the time I thought I was dancing really good but I think the alcohol may have made me believe this.....

Monday, Pete, my mum and I went to to look at a wedding venue. Didnt like it, it was like some dingy back room with a low ceiling and cheap knives and forks. When something ends in 'hall' I envisage a large room with a high ceiling and big windows, not a room in what only I can describe as something like a basement. We went to look at this other place which was gorgeous but the room I liked only has a minimum of 120 guests, well I dont know that many people.... so dont think we will be having it there.

This wedding venue thing is stressing me out already, im sick of trying to find places and organising to look around them. We looked at this other place last night that was really nice but it has no hotels nearby and all Petes family will be coming from quite far away so will probably want to stay over. There is always something wrong!

My cough is also starting to stress me out and give me headaches, if I dont move its ok but once I start moving etc I can feel it brewing up. Stupid thing, why cant it leave me alone?!

Pete managed to break 2 lawnmowers on monday, firstly ours then my dads that he borrowed but my dad thinks he can fix his (hopefully!). Luckily the neighbour lent us hers, I have gone and bought a new one today, I got a free hedge trimmer with it. Great! My car has gone in for a service today and so I have a courtesy car and its a new bmw, they called to say they need to keep my car until tomorrow. Oh thats a real shame... It was quite handy as the lawn mower would not have fitted in my car very well. You should have seen me carrying it into the flat (the lawn mower not the car), jeez that thing was heavy.

Decisions to make

Well I felt bad for my car so I took him to the hand car wash where some very nice gentlemen washed my car for me whilst I sat inside nice and comfy with Alfie who was petrified the whole time. My car is now lovely and clean, well it was until it rained this afternoon, its probably dirty again now.

Yesterday I found out I cannot claim incapacity benefit as I have not contributed enough NI, which is abit of a bummer. Ive been practically working part time or full time since I was 15 years old, even when I was doing my degree (apart from one year I took out) so don't see how its possible I have not contributed enough, but there you go. Anyway she has said I can apply for youth incapacity benefit but have to wait 6 months! Erm so I have to live on thin air until then.... I've applied for income support anyway but not sure if i'll get anything as Pete works full-time, he's an assistant town planner incase you were wondering what he does.

I got a call from the university today saying they have found me a work placement in Rotherham which is about 40 minutes away from where I live so quite far considering petrol and time it will take travelling. I still don't know if I want to go back to university, I dont know if it will make my health deteriorate with all the travelling, work load etc and if I can afford it. I'm not sure if I even want to be a teacher or could manage being one, I would like to do the course to give me something to focus on and see if I would like to be a teacher but its a waste of money if I don't become a teacher and if it makes my health worsen! Stupid cf getting in the way as usual, i'm just stuck with what to do. Plus now i'm worried if I do go to uni and my health worsens so that I definitely can't work I won't be able to get any incapacity benefit as I only qualify for this youth benefit because i'm under 25! Cf is a pain, you just don't know if you can manage things until you do them and you can feel great one day and rubbish another day. Im at a stage where I can still do some things but if I push myself too much my health will get worse like it did when I was working full-time. I feel so much better not working but feel abit useless and like I should be doing something but then I don't want to jeopardise my health. Its very tricky, very tricky indeed and also hard explaining this to people. I get sick of people asking me what i'm going to do with my degree and I know people think it was a waste of 4 years if I don't do anything with it even if they don't say it, but I didn't know what my health would be like in 4 years when I started university plus my health was great back then! Also I enjoyed univeristy and I love studying so would have still gone. I also know people think i'm lazy or whatever when I say i'm not working because of my health, because to look at me I appear fine, maybe I should walk with a limp from now on so people believe me...

ps- I did not mean to offend anyone who has a limp xx