Avoided IV's!

I had Outpatients today, I was expecting to be put on IV's but I have managed to escape!
I discussed how I think I may have picked up a virus. I've been sweating buckets during the night, waking up with soaked hair, since we got back from the lakes I have been sleeping nearly all the time and I have a pain in my throat/ear. In addition to this I have developed about four cold sores on my bottom lip which is an indication I'm not feeling great.

My lung function was has stayed stable and my exercise tolerance is fine as displayed when I went to the lakes, the cough I had also seems to have calmed down. I was coughing some thick, dark green mucus up when we were at the lakes but now it is bright green and thinner but increased in volume, not sure what this means. My weight is stable at 56.3 kg, my appetite has been abit funny the last few days so good to see I have lost no weight atall.
The doctor felt my throat and he says it feels swollen, he has put me on aciclovir which is an anti viral for cold sores i.e. herpes as he thinks that is what may be making me feel ill. If I don't feel better in a few days I have to start some ciprofloxcin (and make sure I stay out of the sun!), if still no improvement then IV's will be the way to go. He doubts it will get to that though and thinks I will get rid of the virus myself. I also had my port flushed and they took some blood from it to measure my crp levels.

It's my mum's birthday today so my brother and I are taking her out for a meal later, we got her a vintage mannequin for her birthday present. She wanted one to hang her clothes on and they look good in your room if you're lucky enough to have the space!

My bridal shoes arrived today, they are beautiful! They are champagne colour, lace, peep toe with a bow at the front. I'm getting so excited now!

On the CF forum we wanted to make some videos to put on youtube that were positive about CF for parents of children with CF and younger people with CF. Here's mine I put together

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!

Blurgh!

Well hello there! I've been feeling abit blurgh so haven't been bothered to post for a few days!

Alfie hasn't been too great either, his gut keeps making some freaky noises that are really loud, I also listened to his gut with my handy stethoscope and there is some weird bubbling and popping sounds going on. No wonder the poor fella has been mopping around, shivering and not eating. It always seems to happen on a morning and then it goes by the afternoon. I have thought of several reasons for this
A) he is hungry, but he won't eat once the sounds start to freak him out
B) he has constipation
C) he has some kind of indigestion problem
D) he has some foam trapped inside him
I shall elaborate on D.... Alfie has been staying in the kitchen on a night die to extreme whining which has been keeping us awake. To keep him in the kitchen we have been using my physio table propped on its side as a wall. Alfie decided to open one of the cushions on the table and pull all the foam out. Result, Pete goes into the kitchen in the morning and it's covered in green bits of foam and I am left with a rather flat cushion! Luckily I had a spare at my mum and dads!

Anyway I took him for a long walk yesterday as exercise can help with tummy problems (me been the expert here...) and he was sick. Not great but at least something is happening! On our walk we were nearly attacked by some protective geese parents, the hissing sent us on our way needless to say.
Alfie was very quiet at the dog training and kept not eating his treats which doesn't help when you are trying to train them! He also didn't eat his tea until just before we went to bed which is very strange for him!
This morning I gave him some weetabix, a good source of fibre! Then he went to see Murphy for a while when I went shopping. He is drinking again and seems fine, so hopefully it has done the trick! I think I shall start feeding him two small meals a day rather than one big one and might carry on with the weetabix.

So enough of Alfie, sometimes I think he should have his own blog or something!
As I said I've not been feeling great, on Tuesday I felt terrible and started crying in the evening, it didn't help that Pete was been nasty to me in my time of need! I think he gets sick of me been whiny but I can't help it!
My prescription for my amoxicillin didn't arrive until Wednesday, luckily the pharmacist agreed to lend me some until the prescription arrived. I think its helping abit, I've been on it just under a week now. My cough is less dry but more productive, is this a good thing? I'm not sure! I'm still very tired though.

Yesterday I got my haircut to try make me feel better, it didn't work... as already mentioned i went for a walk too which was nice. Today I went to Meadowhall with my friend to look for bridesmaid shoes, I HATE shopping. After been there about 10 minutes I felt hungry and tired, luckily we found some shoes in Next which was about the 3rd shop we went into. I didn't find any bridal shoes, going to have look somewhere else, there were some OK ones in bhs but they didn't have my size.

This afternoon Alfie and I went to see my Nana and then I came home and had a little afternoon sleep!
I haven't done my voluntary work for ages, I keep putting it off. Its because it involves doing a social activity and I just can't face it at the moment. I feel bad but theres nothing I can do really. I feel like I've been really busy this week but really I haven't done that much, that's what its like when you don't feel well. Everything is such hard work when in reality it's just a small chore to other people.

I received the newsletter today from Scope who I volunteer for and my piece is in it on cf, there is also a note about the training I'm going to do! Argh! Abit scared now! By the way thanks to everyone who has helped me with that! xxx

Fun Packed Weekend

Girls Aloud on Friday was BRILLIANT!

After about 2 hours of been there just before Girls Aloud came on some people accused us of been sat in their seats. Turned out we were haha! We were in the wrong block! It turned out our seats were actually better, we couldn't stop laughing. The block was completely full apart from these 3 empty seats in the middle, ours surprisingly!!

We didn't stop dancing all night, it was so warm, when Girls Aloud came into the middle we got really close and I got some great pictures. Its so weird to see Girls Aloud so close up, they are so petite they look like you could snap them.

I didn't get to bed until 1am because of all the traffic been diverted, pain in the arse!

Nicola is my favourite. She always get all the nasty comments but she is gorgeous and she has the best voice, she sings most of the hard notes etc

The next day I had to get up early to go to work but I ended up leaving after awhile as I was so tired and my cough was giving me headache. Also I knew I was going out that evening so I wanted to have a rest to prepare myself, they didn't really need me at the shop so I figured it was OK.

I slept all afternoon whilst Pete went for his toenail removing (finally). He has it all bandaged up now, apparently they have put something on it to stop it growing back, how weird is that? Having no nail on your big toe??!!

We went into town on Saturday night. I didn't think I was going to be up to it really but I am tough! We had an argument with the taxi driver as he claimed the centre of town was this random street he just stopped on, he said to go any further would cost more even though we had arranged on a price. Everyone was debating whether we should just get out there and I said there was no way I walking that far, I hadn't even brought a coat as we were planning to get dropped off outside the bar. Eventually he agreed to take us to the bar, he had no idea where he was going and didn't follow our instructions, we finally got there and he tried to charge us more and wouldn't open the doors. In the end we didn't pay more, bloody taxi drivers trying it on!

The night was OK but I got abit annoyed as two of my friends left early because one of them was exhausted, its annoying when I'd made such an effort to go even though I've not been feeling great. I went to Girls Aloud and I drove then I had to get up early the next day, so if anyone is exhausted it should be me! But like I say, I'm tough!

I also commented to my friend (who smokes) that I don't know the point in smoking (as I don't) and I got told I had no right to be judgemental about people smoking as I have never had the choice to do it. Surely I have more right than most people? And surely someone who smokes has no right to have a go at me?

In the end there was only me and my friend who was staying at mine and she was really drunk, my other friend got her boyfriend to pick her up as she didn't feel well and her boyfriend lives in town so wouldn't take us home. So then I had to walk around with a drunk trying to find a taxi, I was not impressed! Especially when some guy thought it was funny to lift my dress up! He got a mouthful of verbal abuse, he's lucky I didn't punch him! I find it quite ironic that I was the last person standing of the night even though I was probably the least likely to achieve this. Wusses the lot of them!! I even did my nebuliser when I got home at 2am, that's compliance with your treatment for you!

So today I am even more exhausted, I couldn't even lounge around in my PJ's as I had to take my friend home that stayed over. Pete and I are going to register our wedding list at Debenhams later on, I am hoping I get to zap things with a zapper Its whats keeping me going lol

Dodging game!

I called the hospital today to ask for some oral antibiotics as I am going to dodge IV's until at least my outpatient appointment. I'm getting a dull pain in the bottom of my chest and my cough is becoming ever more annoying. I'm getting tired so easily, like yesterday I went to the gym and I felt flattened for the rest of the day.

Today I went to order our wedding cake with my mum (Pete had little say in the cake) and then I went to the bridal shop to order my veil. This meant I had to try my wedding dress on again, oh what shame....!! It's still as beautiful as ever, I am going to look amazing on our wedding day if I might say so myself! Then my mum and I went for some lunch then onto JTF to look for vases and ribbons of which they had none suitable. I ended up buying some cleaning stuff for the bathroom, how exciting!

So then I came home and fell asleep, I felt so tired I couldn't focus properly. I've just woken up as the doctor called me back and the pain in my chest is even worse but I'm not in agony or anything, its kind of a dull stabbing, I don't think I'll be going swimming as planned, just too tired. The doctor is sending me a prescription for amoxicillin, he was going to put me on ciprofloxcin but I am going to the lake district next weekend and cipro makes you burn in the sun and so does voriconazole so together i think I will be a walking lobster. He said amoxicillin doesn't actually fight psuedomonas but it will fight everything else and i'm on my nebbed antibiotic so it should keep me going for abit (it's like i'm a car or something!). If I still feel rough he will give me a prescription for cipro if necessary. However I remember the amoxicillin worked quite well at Christmas. Apparently my last sputum sample showed up 'psuedomonas, psuedomonas, psuedomonas, psuedomonas', alright how many times does it need to say it!??!! I get the point! Damn psuedomonas, one day I shall have my revenge!

On another note, Alfie is doing very well at the dog training. He even went up to another dog (the trainers very well behaved dog) and got really close and sniffed it without growling which is kind of a big thing for Alf. When we were practising 'leave', the trainer said Alfie was making it look easy. Well you know I do have a super dog. I shall have him jumping through hoops of fire next!!

Will never get there

Along with the tiredness I am now developing a productive cough (lots of mucus) and also a dry, tickly cough when I'm out of breathe which I assume is me doing some form of wheezing, this morning I thought I had some kind of bird in my throat with the noises it was making! I'm not sure if its wheezing, my chest doesn't feel particularly tight, it did when I was swimming last week though. I get so many different things I lose track of what is what.

I am really getting sick of it all, I'm going to the gym and swimming and walking, getting rest, doing all my nebs and physio religiously. What more can I do?!

Pete commented I must be due some IV's, my last lot finished 19th March. Am I really supposed to be happy I have gone 2 months without any and now I'm slowly slipping again?

I'm never going to get my lung function up, I see this now. There is physically nothing else I can do. Maybe it went up the other week when I was feeling good, but what good is having a higher lung function for about seven days? I have done nothing differently since then, I never miss my treatments or anything.

My outpatients appointment isn't until 29th May so I will see then how I am doing, might be all in my head.

I'm going to see Girls Aloud on Friday, here are some pictures from when we saw them last year!

Sadly we won't get as close to them this year, tickets sold out so quickly compared to previous years and the seats I got are pretty rubbish. They are really great to see live whatever you think of Girls Aloud, they put alot of effort into their performances and are really entertaining.

Ducklings!

Ive taken Alfie for a few walks over the past few days and went around the lake nearby. Its really amazing at the moment, the ground under the trees is covered with this purple/blue flower and it looks really pretty. Then there are ducklings and birds sat on nests all over the lake. One bird's nest is directly under the bridge so you can see the chicks up close, my friend and I were stood there for ages just watching as it's fascinating. She had three chicks and at first we thought she only had two because she was sat on the other two, then another bird (the dad I assume) was bringing them some food and the chicks were swimming over to him and making little noises as he fed them.

Then further down the bridge there is a small waterfall that goes under the bridge into a small stream. On the ridge of the waterfall were eight ducklings and their mother stood at the top, the ducklings couldn't get over the ridge but they didn't seem distressed and the water is too weak to push them down the waterfall. They were there on Thursday and still there on Sunday, there is a little gap which they seemed to sit in to get away from the water.

I have also been to the gym which was so warm I only managed 10 minutes on the treadmill and i was sweating loads so gave it up as a bad job. I hope they have air con they put on in the summer else I don't think I will be able to go there, since it's already getting warm. I've also been swimming and was coughing loads, the lifeguard asked me if I was ok and then was watching me for the rest of the time. How embarrassing! I only managed 20 lengths as my chest felt really tight and I though I was going to sink (so perhaps a good job the lifeguard was watching me!).

I have been feeling so tired, I've been sleeping like a log straight through the night, not waking up once, feeling quite zombish the rest of the time. I think my body is exhausted. Quite alot of stuff has been going on with my family which has stressed me out so that probably isn't helping.

I got my eyebrows waxed on Friday (wahoo!), hardly hurt, I must just be immune to pain :o) I have also finished the final Twilight book, I must say I was very disappointed with the end. I think the author lost track of the overall feelings of the books and the characters and she got carried away, leaving everything behind that I love about the books, it all felt abit rushed.

Trip Down South!

Over the bank holiday weekend Pete and I went to see our friends who live in Cambridge. They are a couple that we made friends with at uni, they both lived with Pete and it's because of the girl that Pete and I got together as she was on my course so it's how I met Pete. Unfortunately they moved back down south after finishing university in 2007 which means its hard to see them regularly. They came to see us in 2008 for my birthday so it had been over a year since we had seen them. So I had the usual worries of would they have changed? Would we find enough to talk about etc? But it was fine and we got on just like before, except we are now more mature of course ;o)

They live in a place that is kind of in the middle of nowhere but we went into Cambridge and did some punting of course. How can you go to Cambridge and not go punting??!! I did not actually have a go, Pete said I am uncoordinated and would fall in the water, which I did not fancy at all so I decided to relax on the boat and went through three toffee crisps in the space of 45 minutes, I didn't even feel guilty about it :o)

We found the punting fun, bashing into walls and other boats, getting stuck in trees, that kind of thing. It would seem however that punting is serious business and other people were not impressed with our antics and chose not to join in our fun, infact one guy insisted in giving Pete a lesson, we were like 'erm we don't care!'. We were so slow people went past us like three times, nevermind! Guess some people don't like to have fun, we must not be as mature as I think.....

We went out in the evening but I was so tired that after a large meal I was struggling to keep m eyes open. I've been feeling tired all week, not helped by the fact Alfie has decided he is going to sit by our bedroom door all night whining and scratching at the door. Last night we had to put him in the kitchen to get a decent nights sleep, I will not give in and let him on the bed because then he will be getting his own way!

So we had the meal and went to a bar and it was about half 11 so we decided to call it a night as we were all tired, I told you we are getting old!

The next day we went bowling, I am rubbish as bowling and came last. I don't like playing it as I get mad at my uselessness!! We then went to see Wolverine at the cinema. The cineworld in Cambridge has much better seats than the one near us, I'm jealous! I ate a large popcorn (Pete stopped after a while) and I could have eaten more, I have no idea what is wrong with me, I am eating LOADS at the moment.

I was tired yet again and slept in the car on the way home, I always sleep in cars anyway. I must find it soothing or something because as soon as I'm in a car I want to go to sleep, it's the same on planes, I can't stay awake!

I did all my physio etc whilst visiting our friends, I did it in the spare room rather than subject them to watching me cough my guts up. It's obvious they could still hear me though and it's kind of embarrassing, especially in the morning when everyone was waiting around for me. I also did my physio in the car on the way home, I don't know what people must have thought driving past. Maybe they thought my acapella was a bong or something haha.

I have been thinking about what I'm going to do when we go on our honeymoon, it's likely we will be travelling for about 24 hours in total and I really don't want to miss physio, nebs etc as I will already feel pretty grotty after such a long journey without having missed my physio. I don't think nebs will be a problem (although washing the stuff might be) however I don't really fancy doing my physio on a plane, coughing up mucus is gross and loud and everyone will look at me and think I'm disgusting. I thought maybe in the airports they might have a medical room where I could do my physio, but I don't really know how I could look into that.

I've finally talked Pete into watching Twilight, I don't think he was very impressed but then he was looking at it on the internet afterwards so maybe he was...... I've finished the Eclipse book and I'm on the third section in the final book Breaking Dawn, it's so good I can't put it down. I feel like it's a crime to stop reading it, infact are lucky I am breaking myself away from it to write this blog!!