Housewarming Party

The house party went well on Sunday. I cooked a chicken curry, some saag aloo and creamy garlic mushrooms for the buffet to go alongside the cold stuff, was quite proud of myself!

About 18 people came in total which was plenty and I didn't get too stressed so all was good! I ended up going to bed before all the guests had left, I'd been drinking since 4pm so by half 12 I was ready for bed!

I missed my afternoon physio, I just couldn't figure out how I was going to do it. I really don't think doing physio when drunk is a good idea, it's a recipe for being sick! I still did all my nebs though, not bothered about doing those infront of people.

Had a big argument with Pete the day after. For some reason he seems to think he can sit and watch TV whilst I tidy up, then have a big tantrum when I make him tidy up as well! Lets just say two wine glasses were broken because of him storming around like a spoilt brat...! Anyway we have made up now so it's ok.

Pete still has his cough, he is supposed to be booking an appointment at the GP's but never seems to get around to it. I'm getting pretty annoyed to be honest, I don't want to catch what he has! Infact we have all been in the wars lately, Alfie managed to catch a claw on something and rip it too low down (dogs have a vein in their claws), the ripped claw was dangling off so I had to attempt to cut it off fully. It was like an operation! I cleaned the nail clippers with a steret and Pete had to hold his leg, then I had to have a very steady hand as it was so close to his foot, I didn't want to cut his skin. Once removed we bathed it in some salt water and I have been spraying antiseptic wash on it to try stop it getting infected, doesn't help when he keeps licking it off though! Hopefully it should be OK now.

I have being doing my voluntary work today, I'm in the process of setting up a blog for them (http://awakementoringservice.blogspot.com). Just call me the blog lady! I also picked up my prescription from the GP's, can you believe my mum found out that repeat prescription requests can be emailed to the GP's rather than dropped off?! Why have they never told me this before!!!! Now I only have to make one trip to the GP's to collect the prescription rather than two trips, one to drop the request off then another in two days to collect it. Madness!!

Here are some pictures from our housewarming party

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!!!

Ancient Nebulisers

I had outpatients today and had to have my annual bloods done. This meant I had to fast from 9pm last night (not really sure why I have to do this!). They then took 15 tubes of blood from me, I have no idea what they are all for, I know one is to check for clotting and some are to check vitamin levels etc. It took her three attempts to get blood from me, they can't be taken from my port, again not sure why! First she tried in the crook of my arm, then in my right wrist and then my left wrist where she was successful. She said often when people have fasted it makes it harder to take blood, she thinks it might be because they are dehydrated. Anyway we got there in the end!

I also had an ultrasound to check on my liver etc, I have one of these about every 2 years. I had to wear a gown which I have never been made to do before, but it turned out better as no jelly then got on my top or bra. The stuff gets everywhere because she moves the scan thingy over your ribs and back and you end up covered! It doesn't hurt, infact it tickled when she was doing it over my ribs. The only time it hurt abit was when she was ramming it under my ribs to try to get a picture of something, but it wasn't exactly painful.

My fev1 is down to 36%, I can't believe it! My stats are 97% which is good and my weight is down abit at 53.3kg, not surprised really, my appetite has been abit poor lately. I have come to the conclusion that my appetite just goes whenever I am stressed or excited. Because I don't feel unwell the doctor said to just see me in 4 weeks and to call them in the meantime if I start to go downhill. I might just be having a bad day or it could be because I have missed two days of nebs...

Yes you read it right! I-neb nebulisers require disks for them to work. The disk has so many cycles on it and each time you use it, it goes down one, when you get to zero you need another disk otherwise it won't work. I use 5 cycles a day, 4 for my tobi (each tobi dose requires two cycles on the I-neb) and 1 for my Dnase. So a disk with 120 cycles lasts me just over 3 weeks. I have to call the company when I need new disks, can you see where this is going....? In all the moving house madness I didn't realise I had gotten very low and on Saturday I noticed I had 2 cycles left. Whoops! I left the company a message to pick up on Monday and some more disks arrived on Tuesday. But that left me the weekend and Monday with only a Porta-neb to use and one chamber when Tobi and Dnase should be done through different chambers as one stops the other working.

This is me not looking very impressed using the stupid porta-neb to do my Dnase, it took about 20 minutes. I then gave the chamber a good wash and used it to do my Tobi the next day. When you do tobi through this ancient machine, you have to sit with a tube going out of the window which isn't very long, so other people do not breathe it in. Well it took over half an hour to go through, I got bored of sitting right next to the window looking like I was smoking a bong and turned it off in the end. You don't get these problems with the I-Neb! Anyway I decided I wasn't doing it anymore, it takes the mick, no wonder people never used to be compliant with their nebulisers! So I threw the thing back in the cupboard and I hope it never makes a re-appearance anytime soon!

I went out on Saturday night and had a great time. Then went to my Nana's for lunch on Sunday, I was so tired, I just wanted to sleep! Pete's cough is not going, infact it seems to be getting worse, I am terrified of catching it. I have a weeks worth of Amoxicillin in 'Gemma's pharmacy' cupboard which he is taking. When I was on it I had 1g (1000mg) three times a day, I've given it to Pete and even though the instructions say the average dose it 250mg a day with severe infections at 500mg (what the heck are my infections then?!), since the tablets are in 500mg that is what Pete is having three times a day. If it is an infection it should hopefully clear it up and before anyone lectures me on giving someone else my medication, Pete was put on amoxicillin for a manky toenail he had and my dad was put on it for sore tooth, they give it out for anything and everything! Just call me Doctor Gleave..!

We are having a house warming party on Sunday! I hope I don't get too stressed! If it goes OK we might have one for family towards the end of May, this one is for our friends.

Come on in

Pictures of our new home!

The Bathroom

Front Room (Next on the list to decorate)

The Kitchen and Dining Area (still abit of a mess! Although we have tidied it abit since I took these pictures)

Our Bedroom

The spare room which is currently a junk and physio room

The garden, the neighbours are very quiet since it's a graveyard behind ;o) Although the same can't be said for the church and it's bells, although it's not an annoying sound. It's the church we got married at which is nice, I will take a picture to put on here later

New Address!

Thought I'd do a blog whilst watching the live leaders debate, quite enjoying these debates, I am actually learning what the parties policies are for a change. No idea who I am going to vote for though, not too keen on Nick Clegg, think he is abit cocky and is all talk!

So we are all moved in to our new home and I finally have the internet after not having it for 8 days, the fiasco with BT did end up with me losing internet connection in the end, talk about speaking too soon!

The past week has been hectic, stressful and tiring. Surprisingly I still feel really well, I don't know how I would have gotten through the past week if I hadn't.

We got quite alot of stuff packed up before we got the keys on Friday, infact one side of our living room was full of boxes and the flat still looked full and nothing missing! We got the keys Friday afternoon and started painting the bedroom straight away. I must point out here that Pete and I have never decorated before and we didn't have much of a clue, infact we stood in Homebase for abit before we even knew what to buy! Anyway we got started and it seemed to turn out ok. The room was originally baby blue and we have painted it lilac and a very pale yellow, almost cream colour. We then painted all the skirting boards and wardrobes with white gloss. The paint didn't seem to affect my chest very much, we kept the room well ventilated, however Pete's chest seems to have suffered quite bad, it could be from dust though when moving furniture. He has developed a terrible cough, he says its a pain coughing all the time and not being able to breathe properly, yeah I know that feeling... I must admit, his coughing is annoying me, how is that even possible?! I've am even letting him use my salbutamol inhaler as he has been wheezing, bless.

We finished on Sunday and then moving day was Monday. When we got home on Sunday Pete packed the rest of our stuff, I was told to stay out of the way and prepare myself for tomorrow, well I didn't need telling twice!

Monday was all day moving and unpacking stuff. My mum, Nana, her husband and brother helped out, and my cousin owns a removal company (how handy!) so he helped us with the big stuff. Our sofa wouldn't fit through the lounge door so we had to take the window out and pass it through there!

It's now Thursday and we are pretty much settled in, just need to get some plumbing work done so we can have a dishwasher as well as a washing machine. Alfie is still abit unsettled, infact I still don't feel like it's 'ours' yet but I'm sure I will in a few days. I'll try take some pictures tomorrow to post on here.

I've tried to be complaint with my treatment and I have been, apart from one tobi nebuliser I missed and that was because I forgot to do it, not because I skipped it on purpose, I was just so busy I forgot! I even did my physio on Tuesday night at 10.30pm after a meal out with Pete's parents, I admit it's bloody hard work trying to fit it in when so busy and tired, but I think I've done well.

Normality

On Saturday we stayed over at the inlaws as it was little sister in laws birthday, last one as a teenager! We went for a meal and I had an amazing vegetarian pizza, yummy!
Then on Sunday we headed to Headingley as somehow Pete talked me into going to watch a rugby match with him, it may have had something to do with Olly Murs performing before the match, still not sure how even that persuaded me to be honest! I'm not a sports fan really. Luckily the weather was nice and I even wore a Leeds Rhinos top to get into the spirit of things, I'm just super cool! Some people who go to watch rugby have foul mouths! It's not a place for such a lady like myself! Sadly I forgot to take some pictures, so you will just have to imagine what I looked like in my Leeds Rhinos top.

I'm feeling really well at the moment. I'm not cured or anything! I still have the normal CF complaints, however compared to normal, I'm feeling pretty good. I feel less productive, more energetic, less breathless and the headaches are little and not often. I know I feel good when I can go a few hours without having to think about anything CF related, such as, ouch my chest hurts or ouch my head hurts, or jeez this cough is so hard I think my head is going to blow off, or 'do I have enough energy to do that?'. Those type of things! I actually feel normal and not suffocated by CF with whatever I do.

We are getting the keys for our bungalow on Friday! Wahoo! Therefore I am preparing things now. I've already had problems with BT. I called them this morning to tell them I did not want to renew our contract and for it to expire when it ends. I then tried to call our broadband provider afterwards and the phoneline had been cancelled! So I have spent all morning trying to get our phoneline reconnected, what a farce! I then have to call back again tomorrow to advise I want the contract to end next week (which is what I wanted in the first place!), talk about back to square one! For some reason my internet is still working even though I have no phoneline, very strange!

Going to start packing things up today and also I have bought this massive file for me to arrange all our letters etc in categories which is what I am going to do next.

You don't know how good it feels to just be able to blog about normal things and not have any CF complaints or news. I might not blog for awhile as it's going to be a busy week, you never know, the next time I blog I might be in our new home! Wish me luck!

Sinus Rinse

I received the sinus rinse in the post yesterday and both Pete and I have had a go with it. So far we both think it is quite good! You fill it up with boiled water (obviously you let it cool down first!) and mix it with a sachet of the saline granules (you get 60 sachets in the pack and then can buy them on their own).

Then you gently squirt it up one nostril until half of the solution has been used (120ml per nostril). As you squirt it up, you continue to breathe through your mouth and then the solution starts the come out of your other nostril and even your mouth. With the solution comes out snot and anything else you have stored up there, it's ace! You give your nose a blow and then do the other nostril.

I haven't woken up with a headache this morning and my nose does feel clearer, Pete said the same. If once a day isn't enough, it can be done twice a day too.

Obviously we need to use it longer to see if it helps long term, but so far so good!

Click here for a link to the product

Poor Port!

I went for my port flushing yesterday, it has to be flushed every 4-6 weeks and my outpatients appointment isn't until the end of April.

I rang up on Tuesday and they booked me in for Wednesday at 5pm. I got there at 5pm and noticed they have put a nice smoking shelter right by the disabled spaces and hospital entrance, which I also noticed hardly anyone was using, it's obviously too hard to walk the extra metre. I was confused though, I'm sure there are signs saying no smoking on hospital grounds... anyway... enough smoker bashing for one day...

I had to wait 20 minutes in a room before anyone came to see me, then when she did it was a ward nurse I didn't know and she said she just needed to do someone elses port and then would be with me. Panic set in, someone new doing my port!!! All the memories flooded back of strangers doing my port before, jabbing me, using the wrong equipment, having a million goes determined to get it in. My palms started to sweat and my anxiety kicked in. If you know me, you will know I hate having my port touched as it is. I can't touch it myself, I scream inside my head when I have to touch it to put suncream on etc. I can touch around the area but not the actual bit where the port is. When the nurses are cleaning it and putting the needle in, I wiggle my toes and touch my face with my hands, I turn into a nervous freak. I actually wanted to run away, I can't even run!!!

She came in at about quarter to 6 and took ages to set up the stuff, whilst doing this she chatted to me about everything she could possibly think of. A chatty person, taking forever to set everything up. Not good signs, signs of nervousness! Seriously my hands were covered in a layer of swear and I think my forehead might have started too! She then asked me if they usually just flush it with hepflush or saline too, I said 'just hepflush I think but that really hurts if you miss' (it goes into your tissue and stinks really bad). She got some saline out whilst saying 'I do loads of ports and haven't missed for ages'. Yeah I'd feel abit more confident if you didn't get the saline out after my comment!

So she cleaned it etc and attempted to put the needle in. I say attempt because I have no idea what she did as I wasn't looking but it was not putting a needle in! She was too gentle, the nurses usually hold around the port or arm and stick it in, it takes about 2 seconds if that. I looked at it for a second and she had put the needle in at a weird angle and not all of it, then tried to straighten it up whilst it was half in the port! It wouldn't flush obviously so she took it out and then asked me to put pressure on the port with some gauze, erm hello I just told you i don't like touching it or it being touched!!!

I actually started to feel lightheaded because I was so anxious and she had another go, this time it seemed to be in. She said it had hit the back of the port and started to push some saline in, my arm stung and the port area started to swell slightly. I told her this and as I told her, the needle started to pop out, obviously because it wasn't in, the saline was going into my tissue, not the port and the pressure of the liquid having nowhere to go was pushing the needle out. I thought I was going to cry and had to tell myself in my head to grow up! She told me to put pressure on it again with some gauze and I was going to ask her to get someone else to have a go, but she had figured this out already and went to get someone.

The ward sister came in who I know and I instantly felt better, she got the needle in straight away and flushed it fine. She apologised about before and I got to leave at about 6.15pm with three holes in my arm and very sweaty palms.

Moral of this story.... I will always get my port flushed through the day by a liaison nurse who knows how to get a needle in my damn port! I shall be telling them this at my next outpatients appointment!

Voluntary Work

In response to a question made in my comments, I thought I'd tell you about the voluntary work I do.

I volunteer for the charity Scope and the project I am involved in recruits and trains volunteers who have lived with experience of disability, to mentor people who have a disability, learning difficulty or long term health condition to achieve their personal goals.

This is a picture of us when we first started (about 4 years ago, I was still at university), the project has grown alot more and I think at the last meeting we were told there are about 40 mentors now.

So far I have been matched with 4 people (called mentees) over the years and what we do depends on what their goal is. It can be difficult at times (Clare the development worker will agree with me on that!) but quite rewarding at times. Plus I feel I have learnt alot about other forms of disability and made some friends along the way. Because I don't work in this area anymore, I find it helps me to still feel useful and put my skills to some use!

I'd highly recommend anyone to look into voluntary work if they don't work and need some direction in their life. Voluntary work is alot more flexible than a job and there is not as much pressure. I only do a few hours a month if that, it just depends on what's going on!

Happy Easter!

Happy Easter everyone!

Pete and I went to church today so I'm feeling all Eastery (if that's a word?), it was a good service and feels good to celebrate Jesus' resurrection. We then took Alfie for a walk which was nice if not abit cold and then I have had a little kip this afternoon.

I have been very naughty and have run out of Tobi, I knew it was running low yet still did not go to the chemist to pick up my supply as I am lazy. I went to get some out of the fridge and the fridge was bare. A little smile did appear on my face as it means I don't have to do it today and perhaps tomorrow too if the chemist is not open. Two days with only one nebuliser to do and totally not my fault....yeah yeah I know it is really but there is nothing I can do about it now!

I started back on my voriconazole as I am doing one month on and one month off, took my first lot yesterday and last night I had some seriously crazy dreams! I can't really remember them now but I know they were weird!

I've ordered a nasal sinus wash to try help clear my sinuses as I keep getting headaches again, my head just feels tense and full up all the time. Its a wash that someone recommended to me so lets hope it works, I'm still struggling with the dripping down the back of my throat, it's getting better but not gone completely. I am going to let Pete use it too and if it helps him I will buy him his own. He has a runny nose all the time and breathes through his mouth, it makes him snore and breathe heavily and he is blowing his nose all the time. Allergy tablets don't seem to help, anti congestion tablets/sprays etc don't work. The GP said it was allergies, but like I say the tablets don't seem to work. Pete being a man would rather put up with it than go to the doctors again and hence I have to put up with sleepless nights and have to wear ear plugs that make my ears hurt, although they are pretty good, they are called bio ears and I'd recommend them. He has now also started to twitch in his sleep, not little twitches but big ones that make the whole bed move. I think I can see why I am tired all the time! It's getting to the stage that once we move I'm going to banish him to the spare room, we don't have one at the moment! So hopefully this nasal wash might help out!

We are not moving until the 16th April now, the vendors can't complete until then because of work commitments! Not very impressed but not much we can do really!