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!

New and Very Cute Arrival!

Meet our newest member of the family, Freya! Born yesterday morning weighing 8lbs 8 and a half oz. Mummy (Pete's sister) and Freya are doing well and hopefully Aunty Gemma will get to meet her next week, can't wait!

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!

Walking on the Level

Hello!

Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!

We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!

The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.

I'm tired today after our trip so going to take it easy and leave you with these photos!

Wee Fatty Bum Bum

I had outpatients on Friday, I had a feeling I might need IVs as was feeling very tired and coughing alot even though I didn't feel like I needed them if you know what I mean! However my lung function is up to 43% and my weight is 57.1kg! I had my port flushed and the nurse missed first time and got the needle in the second time. Yes it hurts when she misses, she is basically sticking a large thick needle, nothing like a vaccine needle, into my muscle, I've now got a little bruise! The doctor asked her to take some blood just to take my tobramycin levels as I keep feeling dizzy and she was worried I had too much tobramycin in my blood as I'm on tobi nebulisers all the time rather than one month on and one month off. To be honest I just think its because I'm tired from the holiday, I haven't heard anything from them so I guess they were OK!

I'm surprisingly bothered about my weight, I felt I'd put weight on but thought it might be just in my head. But it seems I've put on 2kg on and it appears all on my belly so I'm going to try up my exercise and cut back on snacks slightly just until I feel better about myself. I need to pick up on my exercise anyway, I've slacked off and even Alfie has put some weight on so we need to go walking more often! I'm not obsessed or going to starve myself (I've had two takeaways since Friday!) or anything, I just don't like having a belly that is flabby and sticks out! I know people will think I'm pathetic thinking this but its the most I've weighed in about 3-4 years, I just need to tone up abit I guess, I'll probably be back to 55kg by my next appointment and I I'll eat what i normally eat, my body is just like that.

Something creepy happened the other day, I had finished my nebuliser and was going to wash it and there was a bug in it! Right by the bit where the mist squirts out into my mouth! It was a little black bug with orange spots and a wiggly tail. I was so freaked out, I have no idea how it did not get squirted into my mouth! Now I keep checking every time I do my nebulisers, ew!

Back from Sunny Greece!

Hey Everyone!

We are back from our holidays greeted by the best news ever, my friend Chantelle got her double lung transplant on Monday after only been on the list for about 8 weeks! This is how it should be for everyone and I’m so happy for her. She has a little boy and husband and I am so thrilled that once she recovers she can be the mum and wife she has longed to be. Please pray she recovers well and will be home in no time!

So yes we are back from our holidays and we had a great time!

We stayed on Pete’s parents boat, it’s a different one from last time we went, this one is bigger and abit more luxurious, hurrah! We sailed around the Ionian Islands in Greece. At first the weather wasn't too great, I was sea sick on the first day and vomited up a load of sputum into a bucket, nice! On Wednesday (I think) there was a storm including thunder and lightening and then the weather was great afterwards. One day dolphins swam by the side of the boat which was fantastic; sadly I didn't manage to get a picture!

I'm glad we only went for a week though as I find it a very tiring holiday, living on a boat is hard work and although I didn't actually help with much of the sailing what I did do, tired me out! When I say its hard work its just little things like flushing the toilet is hard as it’s a pump, and getting in and out of bed as the bed is really high up or going below and top of deck as you are constantly going up and down some steps. Then staying on top of my physio was hard work as my stuff was packed away everywhere (you cant leave thing loose on a boat as it goes everywhere when you sail if you do!) and the cabin was warm to do my physio in, plus my nebulisers took longer as they seemed to get clogged up even though I rinsed them with boiled water or bottled water.

So although it’s a fun holiday, it tires you out and after a week I ready to come home! It took a day and a half to get rid of my land sickness; this is where when you go on land you feel like the room is rocking because you are so used to being on a boat!

Just so people can get an idea of how much medication people with CF take, this is a photo of everything I had to take on holiday with me for one week. This photo doesn't include my food tablets though.

I had a problem at the airport for the first time ever with my medication. I always take all my medication in my hand luggage because if my suitcase got lost or delayed I'd be in trouble. Therefore I take all my nebuliser stuff in my bag which is liquid. I put them in a plastic bag like required, well two plastic bags as one wasn't enough and I wanted to keep them separate and the woman got funny with me saying they weren't labelled as medication and in future I needed to bring the labels for all my medication. I told her they came in big boxes and there wouldn't be room so she told me to cut the sticker off every box that the pharmacist sticks on. Have you heard anything so silly?! She then put them through a vapouriser I assume to check they weren't dangerous and insisted putting them all in one bag when I'd separated my tobi and pulmozyme from my nebusal as they needed to go back in the cool bag. As if I could keep all my medication in their original packaging, I'd need a bloody sack to carry it all! I have a letter from my doctor which she never even asked for, I know they have a job to do but its so frustrating when they are talking about something they don't know about.

If you remember I complained last year that I had some problems with suncream, well I tried banana boat and Hawaii tropic this time and they were lot better combined with my salty sweat so thanks for those suggestions!

Here is a video of photos we took. Warning! The song has ALOT of swearing in it, so if you are easily offended turn your sound down! I had to have this song though to accompany the video!

Bank Holiday Galore!

Whoops, sorry it's been a while! In my defence I have been busy and then too tired the rest of the time!

There have been what feels like a million bank holidays which really don't affect my life that much as I don't work on Fridays or Mondays! However Pete has been off work as he took the days off in-between, so we have had a busy two weeks. Back to normality now and a chance to rest!

We started off Good Friday by commencing decorate the living room. We started by Pete stripping the back wall and I did the borders for the paint. We finally finished on Tuesday after having to apply four coats of paint along with doing all the glossing and killing the mould on the wall, so that my mum could put up the wallpaper on Wednesday whilst we were away. I do not like decorating one bit, it's messy, there's crap everywhere, your house stinks and to top it all off we had to wear masks when it was really warm, I don't enjoy feeling like I can't breathe when I’m already out of breath from moving around so much! There are some pictures of us in our sexy masks on Pete's phone but I’ll leave that for another day.... Just a note to those with CF, when stripping wallpaper you should wear a mask as mould likes to grow under wallpaper (advised by my physio), I could physically see the mould growing under ours but even if you can't see it, there could be small particles. A normal dusk mask is not good enough as mould particles are so small they can still get through, you need to get a mask that is FFP2 or FFP3 (it's printed on the mask), and FFP1 isn't good enough. I found this out after researching on the internet, click here for the link.

Here is our living room before,


After!




On Wednesday we drove down to Kent as it was finally our trip to Hever Castle! We stayed in Tunbridge Wells on the Wednesday night and went out for a meal which involved me walking up a very steep hill on the way back! Then on the Thursday after a rough start as Travelodge just decided to turn the water off before Pete had, had a shower, we went to Hever Castle. Here are some photos from the day

Then on Friday it was the Royal Wedding of course! Yes I think I am a royalist, I loved it! How can you not love the fact the Queen is riding in a 100 year old carriage or all the beautiful clothes or all the tradition, I think it’s great! My friend came around to watch it with me as Pete went to the rugby; she brought some lovely cupcakes with her with Will and Kate on so I forgave her for being half an hour late and missing most of the ceremony!

She was planning to stay all day but I had to ask her to go home in the afternoon as I really needed to have a nap and just be by myself so I could relax a little, I was so tired I wasn’t being a very good hostess. She then came back in the afternoon and somehow I ended up dying her hair and we got a takeaway. I also got a text from Pete saying he was on Sky sports as they’d videoed him and his mates wearing masks of the royal family at the rugby. So if you were watching the Leeds Rhinos game and you saw some idiots wearing masks, my husband was the Queen!

We went to church on Easter Sunday and then to my Nana’s for a Sunday roast which was nice. Then we have also been to a barbeques at my mum’s and I also went out for tea with my friends on Sunday.

So like I say I have been very busy and as a result feeling very tired! I’m just going to try take this week easy as we are going on holiday soon and I don’t want to end up ill and spending my whole holiday sleeping and feeling exhausted. I think Alfie is due a few walks this week though as he has been neglected slightly and been very well behaved so deserves them! By the way here is a picture of our new fridge freezer, it finally arrived after lots of complaining by me and ended up being delivered in a car by one oldish man, I was very worried but it worked out in the end..!