Donating Blood

Pete gave blood last week, I'm very proud of him!

The needle they use is about the size of a venflon so quite big but the nurse got in easily after cleaning his arm for like 40 seconds, they don't even take that long cleaning my port before it's accessed! It didn't take very long for his blood to fill the bag compared to other people, less than 10 minutes I'd say. Then afterwards he got a nice big dressing and some round thing that they tape over the hole whilst applying pressure, I assume it's to try stop bruising. Jeez when ever I've had needles I'm lucky if I get offered a plaster..! Then he got to have a drink and some biscuits. Apparently he can give blood every 4 months, not sure if he is planning to do that or not. I wish I could give blood but it's not possible since I have CF, as well as being on antibiotics all the time.

If you would like to look in to donating blood, click here

Yesterday was Mothers day and since I am feeling quite well at the moment we had my Mum and Nana round to ours for Sunday lunch, there were 7 of us in total. It was cosy around the table but never mind! I had the left overs in a sandwich today, ummm Sunday dinner sandwich!!

The only complaint I have CF wise at the moment is I keep feeling really tired afternoon/evening time and falling asleep. Last night I fell asleep for about 30 minutes in a uncomfortable position on the sofa, not sure how I managed to nod off! I didn't go the gym at all last week as I have naps instead. I don't really understand it as I am finding it difficult to sleep in on a morning past 8-8.30am, surely if I was tired I would sleep in until later? Who knows?!

Alfie has being having some toilet problems, in that he keeps weeing in the kitchen on a night even though there is a puppy pad down for him (which he doesn't use very often) and we spray the areas where he wees with a repellent. Therefore when I wake up during the night I am getting up once or twice and letting him outside, it seems to be doing the trick however I feel like we have a puppy again not a dog that is nearly 5 years old! It seems to be working though so I shall keep doing it for the sake of our curtains!

I have being taking Alfie to dog classes every week as part of his behavioural training, mainly to try help him behave better with other dogs and for the trainer to see how he is progressing. Last week we had to get our dog to sit on some cardboard, then walk over some poles, sit on some bubble wrap, walk on a plank of wood that was like a sea saw, walk over some hoops and sit on some more cardboard, the aim was to try get them used to obeying commands on different textures. Alfie was really good at it compared to the other dogs and he is a nervous dog, so I was very happy with him.

Goodbye Steroids

Today is my last dose of steroids and I'm quite glad really as a few of the side effects starting now aren't that great. I really enjoy the energy they give me and 'the false sense of being well' , however I am not enjoying the indigestion problems (constipation and now the opposite!), mood swings, waking up at 5am and not being able to get back to sleep, greasy, spotty face, dry mouth/thirst and sweaty hands! Luckily my face doesn't seem to have gone all bloated, but I know it would if I stayed on them for longer as it has in the past.

As I have been reducing the dose I have felt more and more irritable so I am dreading the first few days of been off them completely. It doesn't help when people annoy me, like the woman who stormed out of her house on Monday to have a go at me for Alfie weeing on her plant when all he did was sniff it or the woman who when I asked her to recall her dog away from me and Alfie as it was jumping all over us and getting tangled in Alfie's lead and she was just ignoring it, told me 'he just wants to play' 'this is a park you know'! These type of situations do not help!

I am worried that I will start to feel unwell again though, I'm still coughing sputum up during the night and I keep getting this horrible rumbling in my chest and crackling day and night but then I don't really cough anything up! I tend to cough lots up in my morning physio but not much in my evening physio but then as soon as I'm in bed its crackle, rumble and then I sometimes wake up choking on sputum!

I am trying to go to the gym lots and I went four times last week so very impressed with myself! Will be interesting to see if I can keep this up once I'm off the steroids!

Weight wise I have no idea as one day I weigh 53kg another day I weigh 55kg, but I am eating more and having my supplements so trying my best!

I have a busy few weeks coming up so not really done much the past week. I did take Alfie to a dog class last Thursday, one of the tasks was to get your dog to sit on eight mats one after the other all in a row and Alfie managed it in 28 seconds, yeay!

I've got to have a filling next Monday and I'm scared, I've never had a filling in my life and no idea what they do, so wish me luck!

Happy Yorkshire Day!

Ah smelly wee, constipation, dry itchy skin, sore, crusty eyes, wanting to sleep all the time, thrush, daily headaches and sweaty nights, that right it's IV time! One week in and the tiredness is slowly reducing after me basically hibernating for a week and the other side effects are going up now the drugs are well and truly into my body.

I fell asleep one afternoon last week and seriously I could not wake up, I was actually laid on the sofa thinking 'Gemma you need to wake up, you are covered in sweat and you need to make tea' and I tried to open my eyes and they wouldn't open, it was like they were made of lead. So I went back to sleep and tried again, and again and after about 4 attempts I finally opened them and realised I'd slept for about 4 hours. I've slept like a log every single night, even Pete's snoring hasn't bothered me, but I've woken up at 5.30am every morning which is rather convenient as I put my IVs on at around 6am. I've then slept again until about 10am.

I've got a headache every single day, mid afternoon time, in fact I'm probably due one now. I got a lovely one yesterday that only went this morning once I'd been awake an hour or so. Yes I am taking pain killers and sometimes it gets rid of it, sometimes it doesn't.

I also realised I have constipation on Saturday after thinking I was just getting fat over several days. I had stomach ache on Saturday night and then Pete said something or other about toilets and that's when I put two and two together and realised the problem! After a few movicols I'm feeling less fat now!

So yes IVs are upon me and I have one week left now of the joys they bring, then I can return to normality were my pee doesn't stink like cats wee, I can wear makeup on my eyes and I can sleep without waking in a pool of sweat.

On the plus side, the cold seems to have buggered off and I'm coughing a lot less, so objective achieved! I'm also eating like a horse (where does this saying come from? Do horses eat a lot?) which will keep the dietitian and Asda happy..!

Its Yorkshire Day today so Happy Yorkshire Day to all you lads and lasses!
Here are a few Yorkshire words for you: ginnel, lug, larking, reeks, kegs and my very own word I created 'wang', oh and apparently 'foisty' is a Yorkshire word but I think Pete is lying!

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

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!

What a Difference a Week Makes

I've been a very naughty girl, I ran out of pulmozyme on Tuesday and didn't go collect the prescription from my GPs until Thursday. Which meant my pulmozyme wasn't really for collection until yesterday, so I haven't had pulmozyme for almost a week. It's mostly my fault but also the GPs and drug suppliers fault for being so slow and taking 2 days to do my prescription and then 4 working days to deliver it. If I'm going to run out of something I literally have to realise a week in advance so I can get the prescription and have it in the chemist, it can be difficult to be so organised, especially when my GPs is not around the corner and closed on a Wednesday afternoon. At least I can now email my prescription requests, I used to have to drop the request off and go collect it 2 days later, why it takes 2 days to write a prescription is beyond me...

Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!

Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.

I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!

Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.

It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him



Here he is now, what a handsome boy he turned in to!

Busy Weekend

I've had a busy few days so think I'm just going to relax today and take it easy, I might attempt to go food shopping and walk Alfie, but we'll see!

On Friday night we went for a curry with my dad and his partner and my brother and his girlfriend which was very nice and I also had a few glasses of wine.

Then on Saturday we went to a surrogacy social event, which involved doing a two hour walk. Not the greatest idea for me to agree to take part in, but needs must and all that! As we got closer in the car I kept commenting to Pete how hilly it looked and started to panic! I really don't need to be coughing my guts up for two hours in front if people I hardly know and when I'm trying to make a good impression! At the start of the walk there was an easy route and more difficult one and we were all to meet up about 15 minutes later, I do not think labelling it 'easy' was the correct term. There were two really steep bits so not easy (!) but I managed OK and then once we were on flat and going back downhill it was even better. I think I would have struggled if I wasn't feeling great, but since my chest is feeling good at the moment I managed. I slept well on Saturday night anyway and coughed some very thick sputum up in my physio session that night! I really had to push myself to do my physio, I hate doing it when I feel really tired, it's the last thing you want to be forcing yourself to do!

On Sunday we went to a barbecue at Pete's parents as it was his sisters birthday. The weather was beautiful and we had a good day just sitting in the garden. Here are some pictures

Pete's sister the birthday girl!

Pete's sister, baby due in 11 weeks :o)

I couldn't sleep at all on Sunday night and managed to get about an hours sleep, even though I was so tired. I hate it when I can't sleep but then I'm too tired to try and do anything else! I can't understand how your body can not fall asleep when it's so tired!

On Monday my mum and I went to this barber workshop that was supposed to be on 3D patterns but it was like a basic barbering course, we managed to sneak out before the end. We sat there for two hours and didn't even get a break or offered a drink and the chairs were so uncomfortable! Couldn't wait to get out!

In the afternoon I had a flight test as we are going on holiday in a month, wahoo! I just managed to pass the flight test. When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it , and collect some blood from it in a thin tube. They put the blood in this machine and it sucks it out of the tube it then gives some numbers about blood saturation levels and CO2 levels. They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 94% at the beginning and the lowest they dropped to were 88%. After 20 minutes they cut your ear again and take some more blood and take the same measurements in the machine, they then remove the oxygen until your stats have returned to normal.

I am still sitting on borderline, which means on short haul flights I'm OK and don't need oxygen, but anything longer than 5hours+ and I'm going to need oxygen as I could start to feel unwell such as feel very tired, sick and get headaches due to low levels of oxygen and even end up having a collapsed lung.

I then had an outpatients appointment but they had arranged to see me on the ward at St James since I was already there for the flight test. My lung function is 41% and my weight is 55.7kg. So overall I'm stable and although my lung function isn't the highest it can be, it's sitting at about my average so they are happy with me and I don't have to see them again for 6 weeks, fingers crossed! I also had my port flushed which went fine, got my letters to take with me on my holiday (one says I am fit to fly and one says I need to take my medication with me for medical purposes i.e I'm not a drug dealer!), got a prescription for salt tablets for my holiday and off I went very happy! I need extra salt when I sweat as people with CF lose alot of salt and can get ill if it's not replaced, so whenever I am in a warm environment I need to take salt tablets. I took some at the weekend too as it was quite warm then. If I don't take them I tend to feel very tired and my body aches, especially my legs!

Ps- Sorry about the massive gaps between paragraphs, blogger is a pain lately and I can't get it to leave smaller gaps!

Revenge of the Sputum

Well I'm starting to feel slightly better in myself but I can't really say things have improved chest wise yet. I'm coughing less but when I do cough it's so productive and gloopy that I can't budge it especially since my airways seem to tighten up. I went to the toilets in Wetherspoons today which were upstairs and when I got into the cubicle I coughed so hard I started retching and proceeded to bring up some sputum unexpectedly. Luckily none went on my clothes and I grabbed a tissue before it projected out of my mouth! Not the highlight of my day but never mind!

I also kept waking up last night feeling like I couldn't breathe and taking big gasps on air in. It felt like there was a blanket of sputum over my airways, and when I breathed in it made a really loud wheezing noise and loosened the blanket but then when I tried to cough the sputum up I couldn't! In addition to this my sputum has had tiny dots of blood in it, nothing serious but it's still worth noting. Needless to say there is some freaky stuff going on and I just want to get back to normal please!

Yesterday I went to Scope and got a free mini massage. They arranged for a lady to come and do a taster session and I asked her to focus on my shoulders and back as they are tight from all the coughing. I'm thinking about booking a session as it might help with my posture and help me cough better. Just depends on if I can afford it really! My yoga teacher suggested I get a massage to help relax the tension since I can't go to yoga classes whilst on my IVs, so maybe I will!

Today I was supposed to meet my new mentee for an introduction session which is why I was at Wetherspoons, but she didn't turn up. So instead me and the other lady from Scope had some lunch so it wasn't a wasted journey! I had a curry that tasted more like a chinese, very strange!

Other than that I've been reading my book and learning quite abit about the first world war in the process and doing my knitting! I'm ashamed to say I haven't taken Alfie out for a walk yet this week, but at the end of the day that's why we got a small dog that doesn't need much exercise. A good run around the garden after the birds keeps him fit and I have promised him I will take him for a walk tomorrow! That's about my week so far! See you later folks!

Birthday

Gosh, I don't know where the time has gone!

It was my birthday on Wednesday and it involved quite alot of eating! I went over to Hull with my Mum to see my youngest brother as he is at University there. We had a nosey around his accommodation and then went out for lunch. Then in the evening Pete took me out for Chinese and I ate loads! I think the lunch must have expanded my stomach in preparation.

I got a new charm for my Pandora bracelet, its my birthday stone which is purple and also my favourite colour, coincidence or not?! I also got some pj's, slippers, blu ray dvds, little purple clutch bag and then Pete is taking me to Hever Castle in April as my present, can't wait! I also got some money which is just going into our surrogacy savings.

On Thursday I went to Scope to end my latest partnership and look at starting a new one and then I had my knitting lesson in the evening. I can now pearl stitch although not very good, I keep making it too tight for some reason so got to work on making the loops looser. I'm really enjoying the lessons, it's nice to have a good chat with the lovely lady who teaches me as well as learn something new!

On Friday Pete and I went to Manchester to see a solicitor about surrogacy and then for some strange reason I went to bed at 9.30pm as I suddenly felt incredibly tired and literally as soon as my head hit the pillow I was asleep! No idea what that was about as I'm feeling pretty good at the moment. Sometimes I have lots of energy and feel great and wonder what it must be like to have this much energy all the time, I think I'd be running around like a loony! No wonder other people can do so much in a day!

On Saturday we went out with some of my family to this pub that was having a band night and raising money for CF. There wasn't much awareness raising, just a few posters and money collection tins, we entered a raffle but moved on to another pub before announced the winner! Damn it!

My skin is so bad now though, I have all red bits around my eyes and on my forehead, must have drunk too much and now I'm old it affects me more! My skin has been really dry around my eyes though since I was on IV's, I'm using aqueous cream but it doesn't seem to be doing much! So now I have dry and red skin, argh! I'm also sick of been blocked up, movicols don't seem to be doing much, think I'm going to have to up my dose to two a day instead of one a day.

Here are some pictures from Saturday night

Knitting Lesson no 2

On Sunday we went to Pete's Grandad's birthday get together, we got to meet Pete's new cousins too which was nice.

I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.

So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.

I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.

Pete with one of the twins

Pete's sister with the other twin

Pete's mum (also the twins aunty) and I with the twins

The twins with their mummy and aunty

I met up with some friends last night which was great as I feel like I haven't seen them for ages! We were talking about disabilities and adoption/surrogacy as one is training to be a psychologist and the other is a social worker. It was really interesting as my friend says that I am very honest about my CF and realistic but yet see the positives in my life and cope well with the problems I face. It's nice to think that's how I am or at least how people think I am. I keep doubting myself as to whether I am going to be able to cope with a baby and wondering if I am silly, but I know in my heart I wouldn't be doing it if I didn't think I could.

I had some training on MS (multiple Sclerosis) today as part of my voluntary role at Scope. It was good to learn about another unseen disability and interesting to see the similarities of the problems associated with the condition and my own. I have another knitting lesson tonight, hopefully I might be allowed to bring it home with me this time and do some on my own, haha!

Half Way There

7 days down and 7 to go!
IVs seem to be going OK, my chest is feeling alot better, I'm coughing up less sputum and it doesn't feel to be rattling around my chest as much. Although my IVs seem to be making me quite tired this time around, I think I could sleep all day given the opportunity!

The nurse came to see me today and make a very valid point when I told her about my tiredness and that Pete has had to make tea alot. She pointed out that if I was in hospital which most people normally would be when having IVs, I'd get everything done for me. But as I'm at home everyone seems to think (including me) that life goes on as normal, when in fact I actually need to get some rest to help the IVs work.
The whole point of home IVs is so they don't interfere with my life, but at the same time I still need to rest. I guess it's a balancing act!

My silly port didn't bleed back when she changed my needle, so I had to have some blood taken out of my hand. The needle vibrated when she started pulling the blood out, it was weird but cool! She said it must have touched a nerve but it didn't hurt, never had that happen before, very interesting..!

I've lost abit of weight which is quite funny because I was moaning to Pete last week that my belly was getting fat and I was going to go on a diet, I then enquired as to what you can eat on a diet and when he told me I decided dieting wasn't for me. However it would seem I have lost a kg in a week anyway. My belly isn't as fat anymore anyway, I think it was more all the bloating from those damn iron tablets that are still causing me to have painful constipation. I'm up to two movicols a day to try get things moving, but it's still a struggle! The nurse says if my levels come back OK, I can stop taking them, wahoo! I swear last week I could not fasten some of my jeans my belly was sticking out so much!

I started my knitting lessons last night, it's a lady I know from Scope that is teaching me. I went to her house and spent about an hour there and lets just say, I don't think I am going to be a natural! We are starting with a scarf and I got about two rows (if that's what you call them) done, even then I managed to get a big hole in it somehow and she had to correct it! Her cat is so funny, he only has three legs but you wouldn't know with the way he jumps around. She herself has cerebral palsy and cannot walk or move herself around, amongst other things, it sometimes puts your life into perspective when you see how other people with disabilities live, I may be poorly but at least I have quite alot of independence compared to others.

Hello Good Week?

Well last week turned out to be a pretty horrible week really!
We already had the problem with the damp and the boiler and now I seem to have lost my sat nav! No idea how, but I usually keep it in the car, went to get it out and it's gone! I've looked everywhere I can think of and it's nowhere to be seen! I haven't left it in the Mini, as I've used it since then so who knows where it is!
The boiler is definitely broken, luckily a friend of a friend is fixing it for us, it needs a new valve or something. They were going to fix it on Sunday but had the wrong part, so now it will be getting fixed on Wednesday. In the meantime we just have to keep topping up the pres sue when it falls below 0.5 which is happening about 3 times a day now. Also they are going to sort out the radiator in the bedroom hopefully as it has never worked since we moved in, heat in the bedroom! Wahoo! Going up the world...!
My brothers friend came to look at the damp on the wall and he thinks its nothing serious and needs to do some pointing on the wall outside, so he is going to get back to us.
So fingers crossed, we won't end up shelling out loads of money to get things fixed which is a huge relief!

On Friday night I had to take a sleeping tablet as I just needed to get some sleep! They are some tablets my CF team gave me ages ago and I never took them. Sleeping tablets are quite addictive and not good for people with breathing difficulties so they don't like you to take them really. I'd never get some over the counter ones as I don't know what I can and can't take. Anyway it helped me sleep and I only woke up about twice, compared to about 10 times and then it taking me about 2 hours to fall back asleep each time or not falling back asleep at all! I can't understand why I have become such a bad sleeper, I used to be the opposite and sleep all the time and quite deeply, now the slightest noise wakes me and I just can't nod off. On Saturday I was tempted to take another tablet but I didn't and I managed to sleep quite well last night, so hopefully things are improving. Laying awake in bed for hours makes you so miserable, then the next day you are so tired, it makes no sense!

Yesterday I didn't feel too well, my whole body ached and my sputum tasted horrible which meant it was affected my taste buds and I just didn't fancy any foods. I make a skandishake and the stupid stuff sprayed everywhere so then I had a strop! We did manage to take Alfie for a walk but ended up getting takeaway rather than cooking a risotto which is what was planned. Today I feel better so hopefully it was just the end to a bad week and today will be the start of a good week!

Oh there is one piece if good news, I finally have my flu jab booked for the 1st December! Miracles do happen! Also I got my first delivery of Christmas presents that I ordered last week, I tend to try do most of my shopping online as I hate shopping, all that walking and carrying stuff is too tiring and it's too busy!

Attack of the Mould

Well the title says it all really, we have a bit of a problem!
It was discovered yesterday they behind our sofa in the living room, which is an external wall, there is damp and the wallpaper is peeling off and underneath is some lovely black mould. The wall actually had water on it, so there is defiantly a problem. My brothers friend is a builder and we are hopefully going to get him to look at it to see what needs to be done, although I'm not sure if we should contact a larger company to get a proper guarantee from them?
This also means we are going to need to redecorate at some point and I will not be able to help Pete strip the walls as it will release all the fungus spores into the air and with all my fungus issues, I'm just not risking it, even with a mask on! In fact I probably shouldn't go into the room for a few days after? Call me the over the top but it is clear my lungs like to let fungus' breed on them and it's clear they cause me a lot of problems so I'm sorry but I'm just not going to risk getting anymore. Therefore Pete is going to have to receive some help, any family members reading this, please feel free to offer...!

Ok so that's the first problem, the second is that Pete found some suits that he never wears were covered in mould last night. I can't understand this, the wardrobe looks fine and it's not on an external wall, all the other clothes seem fine too? I'm freaking out to be honest, I mean where we will find some next?!

I'm also freaking out, because anything we need doing is going to take money out of the money we have been saving up for our surrogacy fund which isn't much to start with!

Then to top all this off, our boiler hasn't started properly for the past two mornings! It comes up with a fault which has happened before and all you do do is twist two taps underneath to increase the pressure as the fault means low pressure, then it works again. But why does it keep doing it that's the question?!

Needless to say, I didn't sleep very well last night and so don't feel great today. I was awake for nearly 4 hours before I feel asleep and had to sleep on the sofa because every little noise Pete made was annoying me.

Alfie has been sick this morning so I hope that is nothing serious, he is quite often sick on a morning and I've read I should feed him more often in small amounts, but he already gets fed twice a day and if his stomach hurts he won't eat anything anyway! It is apparently acids building up, which sounds about right as natural yogurt always seem to settle his stomach to some extent. I think we are going to have to start feeding him natural yogurt on a regular basis.

Oh and I still haven't had my flu jab because my GP's are completely useless! Every time I ring they are either fully booked or have no clinics on, I have been trying since mid October! ARGH!!!!!!!!

Halloween Party

Well my nose is back to its normal self, wahoo! Although its very shiny so I'm going to give myself one of those mud facial things tonight to see if it helps!

On Saturday it was our Halloween party which went really well. No-one was a party pooper and didn't dress so that was good! We had seven people sleep over which was abit of a squeeze but we managed it! By the time I woke up the next morning Pete had made them all bacon sandwiches and tidied up alot of the mess, he's such a good husband! Although I do think he has learnt from the last party we had when I had a go at him for doing nothing...

I've been tired ever since the party though. You don't realise at the time how much energy you are using getting everything together and making the food, sorting people our etc, because of your adrenaline. But then once it's all over it catches up and even though I just laid around all day Sunday once we had put all the decorations away and cleaned up, I'm still feeling tired three days later. This weather isn't helping, I officially hate winter. The thing is, I quite like autumn because of the colours and also loads of good stuff is on the TV hehe, however every time I go outside it's 'cough cough', I feel so wheezy today after taking Alfie for a walk and coughing so much. I felt sick yesterday after coughing all the way to my car which was literally a five minute walk. It's not like I don't get wrapped up, it's just the change from warm to cold or vice versa, it's like it freaks my lungs out and they have a fit! It's also depends on how long ago I did my physio, like if I go our first thing after doing my morning physio it's not as bad as say if I went out at 5pm so due my evening physio in a few hours.

Another thing that's bugging me and I have no idea why it's happening, is that I keep waking up in cold sweats during the night. I'm not warm but I wake up and I'm dripping from head to toe and my pillow and sheets are all wet, it's totally gross and uncomfortable and I don't know what's causing it!

On Sunday we found out that my mums car has been stolen. They broke into her house whilst her, my brother and girlfriend were asleep upstairs. Luckily Murphy was in bed with my mum and not in the kitchen, because that's where the keys were, as who knows what they would have done to Murphy if he started barking at them. When my other brother came home with his girlfriend, the front door was wide open which is when it was discovered what had happened. It's scary to think that someone was in the house, one of my brothers could have come home whilst they were still in there or Murphy could have barked and my brother gone down to investigate. Some people are just scum!

Anyway here are some pictures from the party

Random Events

I went out on Saturday and had a really good night, I'm very sensible on nights out and take a coat and scarf with me when it starts to get cold. You will notice alot of girls are not so sensible, apparently it is a northern thing but I don't know really.

Something random happened that night when I went to sleep. I woke up the next morning and saw Alfie's collar was on my bedside table. Alfie had slept in the bed with us that night as a treat but I have no recollection of taking off his collar! I know I had alot to drink but I don't do weird stuff when I'm drunk and I certainly don't forget things that I do, do! So I think I must have removed it in my sleep! Or Pete removed it and is playing with my mind! I asked Alfie what happened but he is staying quiet on the matter...

It gets more random...

Sunday my face was hurting and I just assumed it was due to dry skin from drinking too much. However on Monday my nose really started to hurt, not the nostrils but the actual bone and by Tuesday I had a small swollen area and it was very painful. I was finding it difficult to do my physio as the pep mask hurt when it pressed on my nose and my nose also hurt when I coughed! So today I went to the GP's thinking I would be informed I must have punched myself in my sleep (I wouldn't be surprised after the collar incident). But the GP thinks I have the start of an infection, he said it looked red and felt hot. So he has put me on a weeks worth of flucloxacillin to help calm it. How random is that?! He has no idea what has caused it and neither do I really! The only thing I can think of, is that I could have used water by mistake that hadn't been boiled when I did one of my sinus rinses at the weekend!

The good news is that I still don't have diabetes, my glucose tolerance test came back fine. So that's a relief like it is every year!

Treatment Regime

I'm feeling better this week although I'm still having problems sleeping. I don't know what it is really but I'm having crazy dreams and waking up every 1-2 hours and every time I wake up I have to go to the toilet, that's just a thing with me, if I wake up, must make a visit to the bathroom. I don't know if I wake up because I need the toilet or its some compulsive thing I have! Anyway.... I'm still sweating but not because I'm warm and I can hear weird noises in my chest which isn't helped by the fact I have to use ear earplugs. I didn't wake up until 12 on Sunday and then it's been about 9.30 the other days, I have to be careful though because you can fall into a pattern of getting up late all the time and end up going to bed late, then before you know it your whole sleeping pattern is messed up!

I went to Yoga this Monday as usual and I didn't struggle as much this week, so maybe this is a sign my chest is slightly better? Or the class was easy, who knows! I really need to get back into swimming, I didn't go last week as I didn't feel up to it but I'm determined to go tomorrow, no excuses! If I don't go, tell me off!

I've altered my physio/neb regime as for the past few weeks it's hasn't been working for me. I usually do my saline before my evening physio, then my pulmozyme after, then tobi before I go to bed. However sometimes I don't do my physio until 9pm, then the pulmozyme is afterwards so say 9.30pm, which means then I can't do my tobi until after 10.30pm as there has to be at least an hours gap. Well we usually go to bed about 10-10.30pm so it was causing problems! Also if I do my physio too early in the evening I find my chest is full again by the time I go to bed, so doing it later is better.
So instead I am now doing my pulmozyme at about 6-7pm then my saline and physio an hour later or more later (you have to leave an hour after doing pulmozyme before you can do physio to let it work), then I can do my tobi straight after my physio. So now my physio regime is like this:

AM
(whatever time I get up) Saline then physio then tobi

PM
6-7pm Pulmozyme
8-9pm Saline then physio then tobi

I swear it is seriously starting to feel like a military regime, there is so much stuff to do and think about. The good thing about this new regime is that is gets everything out of the way if I'm going out somewhere, like on Saturday with my old regime I would have had to do my Tobi neb when I got in from my night out. But this way I got it all done before I went out as I did it at around 5-6pm, I don't know why I've never done it before really!

Busy Bee

Hi, I'm sorry I haven't blogged in a while. I have some good excuses I promise!

First my laptop charger that has been trying to electrocute me for the past few weeks has now decided to die altogether, it decided to do this when I had 4 minutes of battery time left. Therefore I can't use my laptop and due to my laptops old age I have been struggling to find a new charger for it. I have hopefully found one on Amazon after a few emails with a seller and I've just ordered it now. I'm currently using Pete's laptop but it obviously doesn't have all my settings etc so I haven't been going on the Internet very much.

My second excuse is that I haven't been feeling great and I have been very busy, so any spare time I have, I've been sleeping and trying to relax, poor Alfie hasn't been walked once this week. I just feel tired and my chest isn't feeling that great, I've been wheezing on a night, waking up covered in sweat and my sputum is thicker.

I went to see my friend from University on Thursday, she's just had a baby and lives in Derby. I really could have done without the drive there and back, especially in a new car I'm not 100% comfortable with driving yet, but I've been arranging to see her for ages so I really didn't want to cancel. At least I got to have a bonding session with my car and it was obviously great to her and her little boy.

I also went out last night, it's been arranged for weeks and I've had a nightmare getting a new dress for it. Basically alot of problems with ordering online etc so with all the hassle, plus I've been looking forward to the night out for ages and everyone was meeting at our house, I didn't want to cancel this either. Had a good time anyway and I will put some pictures up when I am back on my laptop and can load them on!

There is loads of other stuff I have been doing, I'm not going to list everything because I can't be bothered! I feel like most of what I am doing, is to keep people happy, because I don't want to let people down. I sometimes feel quite angry inside because I feel like no one understands that I am struggling to do these things, it's partly my own fault for not saying no but also I feel people put pressure on me. I have a hospital appointment on Thursday so I will see how I am doing, I think I'm going to need IV's however it could just be because I have been busy, I feel like I can't even fit IV's in! Even when I go on IV's no one seems to give me a break, even Pete seems to expect me to be able to do everything even when feeling run down or on IV's. I just get so frustrated, how can you show people you don't feel good and make them understand, if I'm quiet I'm moody, if I don't do things I'm lazy, when I put a happy face on and get on with it, then I'm not really that bad. Just can't win really....!

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!

Good while it lasted

The past few days I have felt abit rubbish, I guess it's all catching up with me and I fear I may have caught Pete's whatever he has. I'm not coughing loads but I am feeling very productive and so tired! I slept all yesterday afternoon and I'm not eating much which doesn't help with my energy levels. It doesn't help when the pharmacy ordered me the wrong flavoured skandishakes, I've got some strawberry, vanilla and banana, they are all yak! I wonder if the strawberry one is classed as my five a day?! Doubt it!

My washing machine is all up and running so I am testing it out today, there was incident yesterday when my brothers friend was drilling the wall to put the waste pipe through. A photo fell off the wall and glass smashed everywhere, luckily it didn't fall on him! Whoops! Here is my new washer all fitted, I must be getting old if I am excited about things like this

Here is a picture of the church from our back garden as promised. There is a guy at the moment doing some work right at the top, it looks so scary!!!