Ace Husband

It's nearly the end of IV time and the past 12 days have not been the best, but neither have they been the worse. I was put on Aztreonam and Colomycin and my eyes have not gone sore at all, so it must be Tobramycin that is the culprit. However I have had terrible headaches, soreness in my joints and muscles and general lack of energy. However me being me decided that IVs were not going to ruin our plans to go to the Lake District last weekend so we loaded everything in the car and I was quite relieved I have an Astra as there was lots of stuff to take, and off we went. We did a short walk one day and that's about it, however I still came home feeling like a sack of crap which has continued all of this week. I'm still glad we went though as it was nice to get away, I love it in the Lakes, I love the views, fresh air and feeling of smallness.

I always convince myself that life is going to be normal when I'm on my IVs and this never happens. The reason for this is I forget all the little things that IVs do to you and how difficult and stressful it makes your day. One minute I can sleep for England, the next minute I can't sleep at all, things smell funny, I smell funny and as a result feel dirty, having thrush drives me insane, my skins itches, all my clothes feel tight and scratchy, getting washed is like a military operation due to a stupid needle in my arm, washing my hair is even worse, my dressing itches, my hands go dry from cleaning them so much and you guessed it...they itch, I have to plan everything to try fit my IVs in, I feel like I'm on another planet half of the time, my mouth feels like I'm hungover for the whole 2 weeks, I get daily headaches, my joints ache, I'm not hungry at all and feel sick...no wait now I want to eat a million chocolate bars, my sputum goes all thick from dehydration, it hurts to reach for the gear stick in the car because of my needle and lucky old me because I have hardly any energy to cope with any of these things.

Luckily I have an amazing husband because no-one else seems too bothered that I'm on IVs, people get so used to me been on them. Oh you're on your IVs again? Yep that's me, on my IVs again. Maybe people know I have Pete to help me so just keep out of it, I don't really know what I expect. Pete has got up every morning at 6am to prepare my IVs and put them on for me, some mornings I barely remember him doing them! He has also done my evening IVs and when we were in the lakes he did them all. He has helped me with my physio, has cooked tea most nights and taken Alfie out after work a few times. This is what being a CF partner or a partner of anyone with a disability involves and I really don't think they get enough credit, Pete doesn't have to put up with this like I do, he chooses to put up with it. My brother pointed out when we were in the Lakes that Pete does lots for me and yes he does. Pete lives with me and knows what makes me tired, what I can't manage, he understands my limits. On the hand hand he also knows what I am capable of, he knows that I'm not lazy (well maybe sometimes hehe) and I hate it when I useless. He doesn't rub it in my face or expect anything in return and it's taken him a long time to learn all these things, I sometimes worry one day he will have enough and leave me. I hate people that don't appreciate what they have and I know I am very lucky to have such a wonderful person in my life. He describes himself as 'a planner by day and carer by night!' I'm not sure if I like him labelling himself as my carer as I'm more to him than a patient! I know he isn't too serious though, I think he's a planner by day and an ace husband by night!

Pete is doing the great North Run today, sadly because I'm on my IVs it wasn't possible for me to go with him to cheer him on which is disappointing but he understands. I'll let you know how he does!

Here are some pictures from the Lakes

12 Weeks!

About two weeks ago I started to get a funny taste in my mouth and funny smell up my nose, and I knew my good patch was over. According to the physio I am not some kind of freak, its the infection I can taste and smell, I feel like i'm some kind of bloody sniffer dog that can detect infection! In addition to this I started to become more productive, I was getting dull pains in my lungs and I was starting to feel more tired.

I coughed my way through yoga and this man (apparently a GP) who has already commented on my cough to the yoga teacher and told her to tell me to take gavisgon came over to me afterwards and started telling me I have reflux and need to take some gavisgon before class. This annoyed me for two reasons, firstly, I do not like coughing infront of everyone and causing the yoga teacher to have to pause during her instructions because i'm so loud, so to have someone blatantly point out it's annoying is upsetting. Secondly, he has been told I have CF so why is he is insisting on interfering and trying to give me medical advice?! Even when I explained to him it was mucus on my chest he kept going on about reflux, I just wanted to yell 'leave me alone you annoying, interfering old man and mind your own business!', instead I just kind of ignored him after a while and walked off. I  was so annoyed I didn't go to yoga this Friday just gone, as clearly my coughing pisses people off.

On Sunday my friends and I did this modelling experience as my friend got us vouchers for Christmas last year. They do your hair and makeup and take photos of you. It was fun and we got some good photos, then we stayed in Manchester and went on a night out. I felt shocking the next day even though I had not drunk any alcohol and I only slept for 3 hours, I had toilet troubles and kept waking up sweating. Here are some photos from the shoot 

I had outpatients on Friday, my weight is down a little at 53.8kg so I was told to try put a bit more on by the dietician. She also confirmed after a lengthy description of my stools (always my favourite thing to do) that I was not taking enough enzymes which has probably contributed to my small weight loss and massive appetite. So stools wise.... pale, fluffy, large stools mean you are not taking enough enzymes, they do not have to be oily, orange, floaty and extremely smelly as I thought. Also going to the toilet five-six times a day is a sign too! I've hardly had any stomach pains though which is weird as i'd expect that if I wasn't digesting my food properly.

My fev1 is a steady 42% which is great and the physio thinks all the exercise I have been doing is helping this. The doctor wanted me to go on IVs though as I do feel as though i'm slipping and when I suggested going on oral Ciprofloxin I was informed one of the psuedomonas infections on my chest (I have two types of Psuedo on my lungs) is very resistant to most things including Ciprofloxin. So I agreed to go on IVs, blugh! I haven't had any since May so done well! So I am starting them tomorrow, i'm really going to try and keep up with the exercise though, it's just so difficult when your head feels all fuzzy and moving your body is like trudging through mud. 

On Saturday was my sister in laws hen night so I was out in Manchester again! We went in to town in a pink limousine, had chinese then went to the Birdcage. I have never seen so many women in one room and so many hen parties! I left at 11.30 with Pete's mum, Pete had gone to watch Man City with his Dad, so we were both staying at his parents. The next day we went to see some friends who recently had a baby and then had a meal at Pete's parents with all the clan over after going to have a look where my sister in law is getting married in a months time. I can't believe it is going to be Pete and I's three year wedding anniversary next week! Here are some pictures from the hen do, I have figured out how to do fancy things to photographs now to make me look better haha!

So today and I am exhausted and not really done much apart from take Alfie out for a short walk!

Pete is doing the Great North Run again in two weeks time and is only going to take sponsorship money if he beats his time from last year. He is going to donate the money to the CF Ward (Ward 6J, St James Hospital, Leeds) that look after me. Because of this there is no just giving page, if anyone would like to pledge to sponsor him please let me know either on here or facebook etc. We would both really appreciate it! He has some new trainers to hopefully run faster and is training ever so hard, he ran home from work last week! Thanks in advance!

CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

The Bupa Great North Run

Well its finally over! 2 hours and 31 mins, 13.1 miles and Pete completed the Great North Run on Sunday. He has raised over £600 for the CF Trust. We are all so proud of him! It was a long day and a long drive home due to all the traffic, but very enjoyable and I'm glad we went to watch him at the finish. He is already talking about doing it next year! Thank you to everyone that sponsored him, your donations kept him going and made it worthwhile! If you haven't sponsored him yet and would like to now the race is complete there is a link at the top right-hand side of my blog where you can visit his page and leave a donation.

Sore fingers!

This week it seems to have been my mission to destroy my hands and fingers! First of all I wound up my friends cat with some wool and ended up getting a nice scratch on the skin in between my fingers which was really tender for a day or two. I don't blame the cat, I was annoying him but rightly so since I'd just had to dispose of a dead magpie he had presented to me as a gift! Poor thing!


Then I trapped my finger in a door, why do you hop up and down when that happens? Does it help somehow?! Then I hit another finger on the corner of a cupboard door, the nail side, this still hurts now. Then to finish it off I somehow scrapped a few lairs of skin off another finger, I don't even recall doing this but I know it bloody hurts when I try to bend my finger! So yes, I'm a walking disaster this week!


Our fridge has broken again! Can't believe it! There I was sat eating my coco pops on Saturday morning and again I realised the milk was warm, disaster! An engineer came out to see it today and apparently when it was fitted (before we moved in) they haven't put any holes in the bottom of the cupboard for ventilation and the compressor has broken which will cost about £300 to fix! So we are just going to get a new fridge freezer and hopefully get rid of the inter grated one and buy a normal free standing one. We went to look at them on Sunday in preparation for the bad news and saw this ace retro one that was quite expensive. Anyway the engineer said they are OK but not that good so sadly we may be sensible and get a normal looking fridge.


I'm feeling alot better this week, I even managed to go food shopping on my own. Now it's getting warmer I don't cough as much outside and can manage to put the bags in the car and take them out easier. The trolley is still hard work to push around since I'm a breathless weakling and trolleys have a mind of their own. However my chest is feeling miles better this week so I managed quite well. I went for a massage on Friday and have felt progressively better since the end of last week, so maybe it has helped, who knows?! To be honest I think massages are overrated, it was OK but I didn't like all the oil, I could hear it squelching and all I could think of was how sticky my skin was going to be when she had finished! I think I need to get a proper massage by a trained sports masseuse as I didn't feel like she pressed on hard enough to loosen up my muscles.


Pete is gym obsessed and going 4-5 times a week in preparation for the Great North Run, making me feel very bad with my twice a week attempts. He also somehow managed to talk me out of getting takeaway curry last night because he wants to be healthy whereas I don't care. There is defiantly a clash sometimes meal wise, I want high calories but I don't want a fat husband!


That's about my week summed up...!

The Great North Run

My laptop is driving me crazy, hence why I am blogging less these days. It is so slow that I am going on it less and less as every time I come on it, I think I get high blood pressure and there is a risk I may throw it across the room! To be honest I think it's on it's last legs, I've had it since my second year of uni so that's about 6 years and I assume one day it is just going to die on me. However I can't afford a new one and I have no idea how to try and speed it up, plus I dread having to transfer all my files across to a new computer.

In addition to this I'm not sure if this blog is really serving a purpose anymore. I get bored of talking about myself and my CF since it's pretty much the same stuff over and over again, I don't know if anyone is interested in what I have been doing in my day to day activities. Maybe blogs are so last year or I need to change the angle of it, maybe I've outgrown it. I'm not sure. Anyway, that's why I am blogging less and probably will continue to do so but I'm not giving up on this baby yet, there is alot of my life from the past few years on here and it's grown to be full of information and it's interesting to look back and see how I've changed. My life is abit dull at the moment, I feel like it's not really going anywhere, but hopefully that will change over the coming months!

So I'm still on my IV's, I will hopefully finish them on Monday. I am feeling better but still not to my normal self so that's why I say 'hopefully'. I'd rather do an extra week than end up back on them in a month! The nurse came to see me on Tuesday and my sats are back to 97% so that's a relief. One problem I've been having more than usual is my eyes, they are so sore which always happens when I'm on ceftaz. They weep and all the skin on my eyelids and around my eyes gets dry and goes red, but this time my actual eye balls have felt like they were on fire at some points. I bought some eye drops for tired eyes from boots yesterday and they seem to help, it really annoys me though as my eyes look tired and sore and it makes me look poorly which I don't like, plus I can't wear any eyeshadow or eyeliner!! Other than that the side effects have been minimal, I think taking the anti sickness tablets really helps, it just gets rid of that blugh feeling.

I had abit of a crazy day on Sunday, we had lots of things to do with family and friends which meant some careful planning to fit my IVs in! I have my ceftaz 3 times a day and it takes 45 minutes to go through, the doses have to be a minimum of 6 hours apart from when the drug finishes. Usually I do them at about 7am so they have finished for 8am, then 2pm so they finish at 3pm and then about 9pm of whenever my tobramycin has gone through as I put that on at 8pm.

However on Sunday I had to get up at 5am so they finished for 6am so then I could put my second dose on at 12 whilst we were in the car on the way to Stockport. Then I had to take my evening tob and ceftaz with me in a cooler bag (they have to be kept refrigerated) as I knew we wouldn't be setting off to come home until late and we would be in a restaurant so I couldn't start them till we were in the car on the way home. In the end we didn't leave until 9.30pm and I had forgotten to get the drugs out of the cooler bag (they have to be taken out of the fridge at least 30 minutes before you use them to warm up abit) so sat with them in between my legs for 15 minutes to warm them up, so didn't get them on until 9.45pm and those two drugs take about 2 hours in total to go through. Then on top of this I had to do my physio when we got home at about half past ten. I can see why I get annoyed when people have silly excuses for not doing things that they have arranged, some people have no idea what length others have to go to, to do 'normal' activities.

This week I haven't done much, in fact I have felt quite lonely and down. I haven't seen my best friends for ages as they are always busy and then the time I did arrange to go out with them I wasn't well enough to go out. One of them is hopefully coming around tonight to watch a DVD, I don't think I have seen her since New Years Eve, how sad is that?! I shall be telling her she is neglecting me so it doesn't happen again!

On a totally separate note, my wonderful husband is going to do the Great North Run in September. It's a half marathon which is 13 miles and he is unsurprisingly doing it for the CF Trust! He has been getting up at 6.30am and going to the gym before going to work, so I hope you can all reward him by sponsoring him, even if it's just a few pounds. I'm going to attempt to put a link at the side of my blog because I know September is quite awhile away so you all have plenty of time to sponsor when you can afford to and the link will be there winking at you to remind you!! Here's a picture of my husband to remind you how fab he is and why you should sponsor him!!

http://www.justgiving.com/Pete-Gleave

A Fighter to the End

I'm very sad to say that Jess who received her transplant between Christmas and New Year has passed away.

This is not the way her Christmas Miracle was supposed to go, yet she was so very poorly and weak, she had waited for her transplant for too long. If she had received it earlier who knows? Not all transplants are successful, it's a risky procedure. However I think that every single time it is still better to at least give someone the chance. Been on the list gives that person hope to continue fighting, a future to look forward to.

Jess was such a fighter, this is a picture from a sponsored walk she did in 2009. Even in her last days she was determined to raise awareness of organ donation. Hopefully her efforts were not in vain. Please click here to join the organ donation register.

I didn't know Jess that well, however I followed her progress and she helped me with my cf presentation last year. She was well known on the cf forums and was a major advocate for the Live Life Then Give Life charity, she will be greatly missed. RIP Jess xx

Suzy's Stars

Suzys Stars - a group of people from around the world, united by their love for Suzy, who sadly recently lost her battle to Cystic Fibrosis, aged just 35 years.Suzy loved to craft, & they do too! So they thought they would share this with the world, & raise some money for the CF Trust in the process!

Please have a look (just click on the star), there are some really cute things, I have ordered a personalised chihuahua fridge magnet! Such a great and thoughtful thing for them all to do.