Rest In Peace Paul x

It's been a weird few weeks, some highs and some extreme lows. Firstly, the lowest low was hearing that my friend Paul had passed away on Christmas morning. I knew Paul from the Brompton and he was my closest friend with CF. We only knew each other for a few years but he was so funny and unlike anyone else I'd ever met with CF. Sadly, he had had a rough few months battling against this illness and it was eventually decided that he would go onto the transplant list. The last time I spoke to him he told me he was having the transplant talks with the doctors, so I'm not sure how far along the process he was before he passed away. He may not have made it onto the list, but even so, it makes me think of all the other thousands of people waiting for a transplant of any kind.

     See you again one day Paul, but until then breathe easy and rest in painless peace friend xxx

Make it your New Years resolution to sign up for organ donation, if you agree with it! If you needed a new heart, kidney, lung... would you take one? If you would, then you should give one when you're gone. It takes 2 minutes to sign up and you could save up to 7 lives!

Here's a link of an interview on Daybreak this morning, of two girls who have had lung transplants. You may recognise one of them, Kirstie, who made a documentary a year or two ago.

http://www.itv.com/daybreak/health/two-friends-saved-by-lung-transplant/#.UsE0roT--qg.facebook

This is the organ donation link, for if you want to sign up: 

http://www.organdonation.nhs.uk/

The highs of the last few weeks were obviously CHRISTMAS, seeing family and friends! I love this time of the year and all the merriment that goes with it :P I went to Winter Wonderland with some of my friends, a few parties and get-togethers and had lots of yummy food!

My health has declined a lot and I've just literally got off the phone with Alan at the hospital and I will be going up later today to start home IVs :) Bed rest and munch for me for the next few weeks. Then early Jan, Alex and I will be moving again- getting fed up of moving around!

So fingers crossed for a smooth and quick-ish run at the hospital today. Speak soon xxx

Christmas Elf!

I came out of hospital on 13th Nov so I could be a Christmas elf at Chessington Garden Centre :) I probably needed a few more weeks of IVs, but I was insistent that I'd be an elf!

The elfing is for about 6 weeks, but just 2 weeks in my body was already struggling. I was hoping that my health in general was getting better and more stable; I was using this little elfing stint to see if I could handle maybe a part time job in the future. But it seems that my body just won't let me do that at the moment :( The elfing is quite a low energy job too, the managers kindly give me the jobs where I can sit down all day, but it's still taking it's toll. I feel so gutted! I've cut down my hours now, so fingers crossed I can complete the last few weeks without getting too much worse.

My sister Abi, Alex and me with Santa- who strangely enough is one of my friend from Brompton's dad. Small world!

Barney had his first birthday on Dec 2nd, and we had a party for him! Was so funny and I made him and his doggie cousins a cake.

The financial stresses of being "disabled"

I have never written about the side of CF which includes help/benefits. I think because I'm ashamed of receiving them as you hear so many stories in the news of benefit scroungers and it gives disabled people a bad name- especially if you look "normal" and don't look as though you are ill from the outside. But the truth is, I could never work a typical 9-5 job. I've tried working in the past, but it was basically just a waste of the company's time and money hiring me as there was so little I could do and I was so often too unwell to even make it into work.

I then was advised to claim the benefits that I am entitled to: DLA (disability living allowance) and ESA (employment and support allowance). Alex was also advised to claim for carers allowance as he was looking after me for over a certain amount of hours per week. With this, Alex and I were able to start living independently! We had our own flat, could pay our bills and could even afford to save to go on holiday.

Now, a few years down the line, it seems all was too good to be true. Everything in our independent lives has crumbled in the last few months. It's a nightmare. Today they have just cut me off ESA as Alex and I are married now, and apparently that changes everything. We have no where to live of our own and so have moved back to my parents.

We don't own much as it is, but our most precious things are our animals (one dog, 2 kittens) and we just don't want to have to rehome them because we can't afford to look after them. It seems that I'm being punished for having CF and for trying to live independently and "normally". Does the government really want me and my husband to have to live with my parents forever? To have them pay for our meals and keep a roof over our heads, instead of saving their money for themselves? All because I have an incurable illness (that I would happily exchange for a healthy body in a flash), which means I can't hold down a full time job and need help from someone to get around, dress, wash, administer meds etc when I'm ill?

Is making sure the bankers of this country get their bonuses really more important than giving people the chance to LIVE as opposed to existing? It's not just me and my problems, there are millions of people who aren't given this chance: people on low income, other people with disabilities, people caring for relatives, single parents.... Personally, I think this government have their priorities mixed up and I don't think lower class citizens of this country will want to stand for this much longer.

Day 7 update

So I've been in hospital a week now and even though I have a cold (side effect of flu spray) I'm starting to feel better- not coughing as much. But this week has had its set backs! I was told by the docs that I might not be getting my PEG this admission now as they want me to be able to do blood sugar testing by myself before having the PEG put in. As well as have some psychology appointments to make sure I am mentally ready for the PEG (even though I have been asking for one for 2 years!!). The dietician and I are not impressed. This always seems to happen here though; they "promise" one thing, then back out at the last minute. Gets your hopes up for no reason and makes trusting the team very hard. I understand these factors are important before having one put in, but they should have said so months, or even years, ago so that I could work on them and be ready by now.

I've been working on my blood sugar monitoring. They monitor bloods to make sure the sugar levels aren't too high. Apparently though, mine are coming in too low. I've told the nurses this is probably because I'm in hosp and don't have much of an appetite in here, as I'm confined to this room and the en suite and can't use up much energy compared to if I were at home living my normal life. Somehow though, I don't think the docs are going to accept that theory tomorrow lol....

Being in here reminds me how grateful and lucky I am to be able to do home IVs. It's so difficult to sleep, eat and remain positive in here. It's not the nurses or cooking staff's fault or anything, it's just not home- and I'm very much a home bird!

Thankfully, I was able to come home for a few hours this weekend and saw my family, Al's family and my Barney bear and the kittens Ethel and Arthur. Was so nice! Picked up my spirits :)

Oh, and if anyone is interested in the numbers and figures of my sats, weight, lung function etc they aree....
Lung function last week: FEV1 59% and FVC 90%
CRP levels: beginning of last week- 90; end of last week- 52
O2 levels: 93-96%
Weight: 45kg

Long time no see!

It's been a year and 3 months since I was last admitted to hospital! I've survived on home IVs until now, but it's time to come in for good physio and for someone else to take over the meds. Not sure what my lung function is at the moment, will probably do a test tomorrow as well as have bloods done to check my crp (infection level). My weight today was 45.4kg, which is more than I thought thankfully. I'm still hoping that I will have my PEG fitted during this admission, so I can finally put on weight and look normal!

It's been strangley nice coming back here, seeing the same nurses is reassuring as they already know me. There is a new microwave though ;) Will be obviously sad being away from my friends, family and animals; but I'm hoping to come home a few times as I have some appointments I need to get to back home.

Luckily, I have managed to go to most of my friend's birthdays before my admission. It's always the way that when you have an admission coming up, there is suddenly loadssss going on! Sod's law.

Anyway, for now I'm stuck in these 4 walls watching Lady Gaga crawl across the Xfactor stage in her undies... Ta ta xxx

life life life

Today I had a follow up appointment at Brompton with Barbara (the doctor I usually see when I go up for IV check ups) and a trial for a new thing called Tobi Podhaler. I was asked to go up for 1pm to see Barbs before my trial at 2.15. I expect to wait a while to be seen when I'm up there as there are lots of patients in the hospital. But this time was unusually long. I hadn't seen Barbara by the time my trial came round, so did that first. I currently take Tobi through a nebuliser, but this is a new invention that allows me to take the Tobi medication through an inhaler instead. The whole process is quicker, more convenient, needs less maintenance of equipment and doesn't involve a big nebuliser. Overall, many bonuses! The trial was to make sure I didn't have any reactions or that my airways didn't tighten once I'd had it. Thankfully I passed it and now have a much quicker way of taking that medication :D

So then I went to wait again for Barbara and the nurses kept bleeping her. By this time it was about 3.30. Finally at about ten to 4, a nurse informed me that Barbara wasn't even in! Goodness knows why it had taken them soooooooooooo long to find this out. I was a bit annoyed that I'd wasted so much of my day waiting for someone who was never going to turn up. The nurses told me though, that another doc would see me quickly as I'd been up there most the day lol.

I saw a nice doc called Callum and explained that my lung function has still not improved, neither have my symptoms and he went to ask the head doc of the hospital what we should do. A little later he came back to say that I should stop my current IVs as they are clearly not doing anything and I will be put on the non-urgent list to come into hosp for an admission for IVs and really good physio.

Pretty gutted to be honest that after 3 weeks of IVs plus oral tabs that my lung function hasn't budged even 1% :( I'm moving house in a couple of weeks, which will be stressful enough. Now I will probably be ill for it and then once I've moved in I'll be straight back out the door to stay at hosp for 2 weeks. But what can you do 'ey!?! That's life at the end of the day. Just hope I will have the energy and patience to get through it all :/

2 weeks into IVs

On Monday I went back up to Brompton for an appointment and to see if I should stop IVs, as the two week course had ended. The good news was that thanks to the steroids I was on, I'd put on 1kg! :D So currently around 45.5kg. Other than that, there had been literally no change to my lung function or sats :( So I'm trying another week of the same IVs. I think I probably need to change IVs really, but might do that next week if there is no improvement again.

Spoke to the dietician about having a PEG put in and I now know more about it. I'm also emailing a woman who has had a few PEGs, so she is telling me her experiences and answering all my questions :) She's been very helpful! The dietician thought it would be a very good idea to have a PEG put in to help me gain and maintain weight, and they are hoping to put one in before Christmas.

Next time I blog, will probably be when I'm 21! I'm getting so old lol x

I want a salad!

I am currently at the Brompton hospital, just starting some home IVs as after my amazing holiday to Rhodes, I became very ill. The usual symptoms of coughing, exhaustion, painful joints but this time it seemed much worse and I the pain just wouldn't budge. I also couldn't keep much food down so have lost weight again :( 44.8kg at the moment. 

All my life I have needed to eat very fatty/high calorie foods to try and gain weight. Sounds good to most people: as much chocolate, crisps, cakes, fry ups, mc donalds as I can eat! But living with the reality isn't as tasty. I would LOVE to be able to have a salad for lunch or a bowl of fruit for dessert. I have only had one salad (as a meal) in my life and it was sooo yummy! But without drenching it in salad cream/dressings, there isn't much fat or calories in it. Therefore, it isn't much good to me to be eating it regularly. The dietician tells me I need at least 3000 calories a day, every day to put on weight. It is a continuous struggle and can be very stressful when you're not feeling well and don't have an appetite. 

So, after trying exceptionally hard over the last 6 years and still haven't put on and kept on any weight, despite trying many supplements too; I have now pleaded with the dietitians and doctors to consider me for having a PEG fitted. I was close to having one a few years a go, but we decided then to give it another year or so of trying to manage my weight more naturally. A PEG is like a little tube that goes from your stomach out to the surface of your skin. You then attach "feeds" (high calorie liquid) at night so that as you sleep, you are taking in more calories! I only remember a few details of the PEG and the operation from the talks a few years ago, so will ask docs at my next clinic app in Sept. 

I am very excited at the possibility of having this op done, if it is a success and I am able to gain weight from it, my lungs will benefit as my body will be stronger to fight off infections. Plus, I might be able to eat a salad every now and then! ;)

Annual review follow up appointment

Today was my annual review follow up appointment. Had my actual annual review like a month or 2 ago, but today was when I'd see the doctor and go through the results of the tests.

So firstly, weight was down to 45.4 kg. I had a feeling it had gone down due to the hot weather making me less hungry and my chest getting worse; so using more energy to cough, therefore loosing weight. The plan now is to try more supplements and to aim for 3000-3500 calories a day. That's going to be hard, but I'm determined to do it. If anyone knows any super calorie food, let me know what they are!

Also, I need to do some blood sugar monitoring to check I'm not showing signs of diabetes. It's common for people with CF to develop it at some stage, so the docs like to check every now and then.

Lung function today was surprisingly good! I had been feeling pretty bad over the last week, but today I managed to do a good blow of fev1 68% and fvc 99%.

My chest xray, in comparison to last years, hasn't changed too much. This is great news as I was fearing that I had gone down hill a lot. My lungs still aren't amazing, but the fact that they haven't declined dramatically has really reassured me that all the hard work is paying off and things seem to be going well.

I've been referred to a specialist about my painful and swollen joints- mainly my ankles and knees.

Overall my appointment went better then I expected. I am now starting a course of Septrin to try and increase my lung function and keep me well for my holiday in a few weeks. I am going to rest a lot this week and do loads of physio and stuff my face to try and get my health as good as possible.

This is all great news for me, but whilst at hospital I saw one of my CF friends who isn't doing as well at the moment. Seeing him in a wheelchair and struggling to talk through lack of oxygen was upsetting and I wish I could have given him some of my luck today to make him feel better. He seems to not be having much of it at the moment. Thankfully he is in the best place and I hope that he will recover super quick and be able to go home soon :)

Other than CF stuff... Alex and I rescued two kittens! We've called them Ethal and Arthur. Barney's been brought up knowing cats so they are getting along well so far :) Here's a little pic...

Arthur on the left, Ethal on the right

Barney, Arthur and Ethal- happy families <3

Quick update

Just a quick update.. After 3 weeks on IVs I came off them. I was supposed to go up to the hosp for a lung function, weight check, sats check etc but when I got up there I couldn't find a parking place anywhere. Was extremely frustrating, so I had to cancel and go home. In the end, Alex did my final flush and took out my port needle, my mum did my lung function and I just emailed the hospital my results.

Sadly, my lung function hadn't come up much, if at all. The results were 64% and 98%. The 98% obviously is amazing for me, but that one isn't as important as the other one (the 64%).

So I have my follow up appointment for my annual review on 29th, so I will finally see a doctor other than Barbara- who is the person I see every time I go to Lind Ward to get IVs. It will be good to get someone else's opinion on what I should be doing.

Catch up

Today is my HUSBAND Alex's bday! We celebrated it this weekend with a BBQ with family and friends. Alex's isn't one for clubbing, he prefers to just relax with friends and famoo chatting away (he never shuts up!) However, his older brother Julian, without fail, will try every year to get him out clubbing afterwards haha.

I had still been resting the weeks previous so hadn't gone shopping to get anything nice to wear. So I got one of Alex's t-shirts and made it into a dress. Worked quite well I think :) And then when I wanted to go on the trampoline with his sister, I could just transform it back into a t-shirt and chuck on some leggings- versatile!

Also at the weekend was Barney's dog show. I entered him into 5 different events (I was determined to come home with a rosette, so gave us as much chance as possible!) They were: waggiest tail; best puppy; leave the sausage; fluffiest dog and this other one which was just like most healthy dog basically.

He won fluffiest dog!! When I went to show family and friends our rosette, I tried to blag that he won most obidient dog- not many people believed me haha! ;)

Health wise... I went to hosp on Friday which was 2 weeks after starting IVs. Usually I stop IVs after 2 weeks, but this time my lung function had only increased 10%- from 50% to 60% and I wasn't pleased or feeling well. So we agreed that I would carry on with the same IV meds for one more week and see what I'm like after that.

I asked again about the Serratia bug that is in my lungs and the docs said even though basically no one in the hospital has it, they aren't too worried about it. Obviously they don't want it spreading to other patients (so I stay quarantined when I go to hosp), but they feel that they can keep it under control with meds at the moment. I asked if there was any way I could get rid of it for good and prevent it coming back but apparently I can't, so it's just another bug to contend with and try and keep control of.

I knew that one day there would be more bugs in my chest than psuedamonus (can't spell it). It's just the nature of CF and I know people with 3, 4 or even 5 different bugs in their chest! So I'm still doing pretty well in comparison. Just going to increase my physio and overall effort to try and keep myself well :)

Scared!

It's been a while since I last blogged, but I just haven't had the energy. After I came back from my lovely honeymoon, I just slept and slept and slept. I think it was partly a come down from the wedding, I needed to rest for weeks.

Then I had the dreaded annual review last week. It's a day where you go hospital for lots of different tests to see how your body has changed in the last year. I couldn't eat as I was having a blood glucose test to check if I'm diabetic; other blood tests; x-ray; very detailed lung function and chatted to the physio and cf nurses.

Overall, I said to them that this year I have felt like I've had a lot less energy and my weight hasn't increased sadly. The blood glucose levels came back to show that I was borderline for being diabetic, so I need to do blood sugar monitoring at home to see if I need any meds for it or not. This happened a few years ago too, but in the end I didn't need any meds- so hopefully it'll be the same this time.

My lung function had dropped to mid 50's and my CRP (infection level in blood test) was quite high, so they put me on an oral antibiotic called Septrin to see if that helped.

So that was last week, but this week I had to go up to get my port flushed. I went up to the day unit and they like quarantined me in a separate room from everyone else, which was very odd. When I saw the doc I asked why and she said that in my lungs there is a new bug growing called Serratia. I still didn't understand why I was separated, until she told me that I'm the only person in the hospital and that the docs know of who has it. Obviously, they don't want it spreading so I need to be in quarantine when I go to hosp until it's gone.

I'm quite worried though because the head doctor- along with all the others- doesn't really know much about this bug or where it came from or how to get rid of it. They need to do some research on it. I'm hoping it's not a really bad or dangerous bug. However, maybe this could be the answer to why I have no energy ever, or why I get these horrible pains in my legs...?

Also, my lung function had dropped again, I think it's the lowest it's ever been 49-52% FEV1. So I'm on home IV's for 2 weeks. Hoping so badly that I start to feel good again soon!

Other than health stuff, Barney had the snip this week and I'm entering him into a puppy competition in June! :P

A married woman!

Well, it's been 2 weeks since I last blogged, and it's been such an exciting, unforgettable 2 weeks- the best 2 weeks of my life!

My wedding to Alex was definitely the best day of my life! I woke up at like 5.30am so excited, like a child at Christmas. I was at my mum's and there was a house full: me, mum, dad, brother, sister, 7 bridesmaids, al's mum, aunties, uncles, cousins, make up artists, photographer, hair stylist, florists... thankfully it wasn't stressful though and we could all enjoy the morning together :)

Then as we were getting into the cars to leave for the church, it started pouring with rain! However, the rain made some great photos of all the family helping to keep me and the bridesmaids dry, all giggling away! :)

The service was lovely, my little mama did some readings and it all went smoothly. The last wedding to be held in Ruxley Church.

Then Alex drove us to our reception at Glenmore House in our car that he'd put tin cans and ribbons and bows on.

We did the photos before the meal. Luckily it had stopped raining so we didn't get all wet.

Then we had a lovely meal and had the speeches.

After that, the evening guests arrived and Alex and I cut the cake and had our first dance, with my cousin Jessie singing it for us- "a thousand years".

Then everyone was dancing and drinking lol :D

On the Monday, Alex and I jetted off to Tenerife for our honeymoon :) We missed our puppy Barney so much! We called him everyday to hear his little bark haha. It was lovely to relax and spend time just me and Al, but we realised that we really are home-birds- we missed our friends and family so much!

My health for the wedding was beyond miraculous! For that one day I honestly felt like I didn't have CF. It was like God let me have a day off to enjoy myself fully and not have to stop every 5 mins to catch my breath or cough. Obviously, I did still cough every now and then, but I felt like I had all the energy in the world and could dance forever. I loved it so much!!!

I've been back from Tenerife for nearly a week now, and for the most part of that time I have been asleep! I'm not sure if it's because I'm ill or if it's just a come down from all the excitement and hard work of organising the wedding. I'm hoping it's the latter! Time will tell...

So what's next?! Back to reality now and sorting out everyday odd jobs. I'm looking forward to all my friends coming back from uni for the summer and have a few dogs booked in to groom :)

Finally...

My dad, his brother and their best friend are game designers in their spare time. They have just designed a new game and are fundraising to produce it. Take a look :) They are nearly at their goal amount! The video tells you about the game- also it's funny watching them trying to act ;)

http://www.kickstarter.com/projects/2061897488/promised-land-1250-587-bc-a-new-game-design

xxxxxxxx

2 days to go!

Just 2 days to go until my wedding! So excited :D And the best news (for me) is that my chest is sooo much better! This combo of steroids and Septrin (oral antibiotic) has made such a difference. I am hungry, coughing a lot less and can actually stay awake for more than 4 hours. The docs really got it right this time, and I'm so thankful.

All the wedding prep is done so it's been a week of pampering ourselves, which is lovely :) The weather looks to be typically English haha, but oh well. We are getting married in my family church that we've been going to for like 20 years, and it's the last wedding before it's knocked down (they have built a new church next to it). So our local paper wants to do an article on it! We've had our little interview, just need to send them photos from the day. Can't believe it- that will be another thing crossed off my bucket list :)

The only thing I'm gutted about our big day is that our little Barney Bear won't be able to make it :( He's just too hyper- only being 5 months old- so it would be more hassle than it's worth lol. But he's going to have an amazing day with some friends from the church, running around and playing all day!

What has taken me back the most is the kindness of people during this time in my life. Friends are making such an effort for our wedding- booking in hair appointments, spray tans, buying new outfits, buying confetti and little things. I know it might sound weird, but I just couldn't really believe that people are making such an effort for my wedding. Like most of my friends are students or working so hard to keep themselves afloat during these hard times, and the fact that they'd spend their earnings on things for my wedding, instead of things they might actually really need just touches me so much! Not to mention a patient from my mum's work (who I have never met) has made a cake for us! The kindness of people really does make me appreciate all my friends, family and even random patients!

So if you're coming to my wedding and this applies to you, thank you so much. I'm sure I will never forget my wedding day and I promise I will never forget the kindness and generosity of you all. See you Saturday, I love you!

Hen Do!

My hen do was just over a week ago now and it was literally the best night of my life! The morning and afternoon were quite stressful, I wasn't feeling great and had quite a bit to do. Plus the hen do started at 1 in the afternoon so there wasn't much time to get it all done by. Once I was ready I de-stressed thankfully and enjoyed firstly seeing a lot of my family and friends at my mum's. She'd bought little nibbles and drinks bless her! My sister Abi had arranged some games, one of which was pin the willy on the guy and Abi had drawn a worryingly life like picture of a naked man haha!

Then 23 of us travelled up to London. Omg, trying to cart 23 girls, all in fancy dress, through London stations is a nightmare haha! You have girls going toilet, withdrawing cash, tickets not working, people buying drinks, shoes hurting... the lot. Thankfully I had my Aunty Yasmin who travels regularly on London trains, and my friend Katie, who is a born leader, to take control and get us to Dreamboys :D

Once we were there we had free cocktails and a meal. We had front row seats for the stage (after using my disability card- perks of CF 'eh!). There was a drag queen, a singer and loads of HOT HOT HOT guys!! Some striped all the way lol. Was so funny. They got me on stage too and blindfolded me and made me touch him and stuff! It was such a good show!

After the show had finished, the place turned into a club so other people came in. By midnight we were all knackered- seeing as we'd been there since 6ish lol. So we went home :) Some of my friends had grabbed one of the stripper's trousers and given the to me as a souvenir ;) hahaa.

 On the underground

 My favourite Tommy!

All us girls <3

THANK YOU TO EVERYONE WHO CAME TO MY MUM'S AND DREAMBOYS. YOU MADE MY HEN DO THE BEST NIGHT OF MY LIFE AND I WILL NEVER FORGET IT. I LOVE YOU!

Since then, I've been resting up to try and get better for my wedding. I went on IVs again the day before my hen do, and I finish them in a few days. I was put on Tobramicyn and Ceftazadine (don't know spellings). I'm still quite run down and tired and there is a lot on my chest still. So, again, I'm a bit disappointed. I guess after the wedding and honeymoon, the best option for me is to actually go into hosp for 2 weeks and have IVs. But we'll make that decision when it comes :) Until then, just 10 days until my wedding! It doesn't seem real. Honestly, I'm glad though because I really really dislike change and don't cope with it well! Status quo- if nothing changes, nothing can go wrong hahaa :P 

Speak soooooon xxx

Hen night eve!

Eeeeekkkk! Today is my hen night eve and Alex's stag night eve. So excited for tomorrow- I'm going to my mum's for the afternoon for games, drinks, nibbles etc and then up to London to see the Dreamboys- a male strip show like magic mike ;) with all my girlssss, plus Daniel of course!

I'm glad I'm excited now, because at the beginning of the week I was dreading it. My body felt so drained and exhausted and just the thought of dressing up and going to London made me sleepy! I haven't had the best few weeks chest wise: I went up to hosp last week for an appointment but there was a delay of an hour and 45 mins, so me and Alex decided to go home as we wouldn't have been seen till about 6pm. Then no doubt rushed through and then have to wait an hour for pharmacy and not get home until about 8.30pm!

I re booked and went home. I'd had a cold which stayed on my chest and my voice had gone- I just wasn't feeling great tbh. So this week I just relaxed for once and stayed in bed watching Vampire Diaries <3 I think it's done me a world of good :)

Went up hosp today, just to Lind ward, which is where you don't see dietician, physio etc, just one of the docs. Anywhooo, they decided to put me on IVs again. This time Tobramycin and Keftazadine (don't know the spellings), as my lung function had dropped and sadly my weight has gone down even further :(

But I'm determined to be well for my wedding day and put on weight so I look good for it :D Serious physio, force feeding and bed rest for the next two weeks. This stupid infection is not going to ruin my day!

Pics of the hen and stag will obviously be up next blog...

loves xxxx

Not great news

Bit of a negative blog to start with this time :( Firstly, been reading so many CF deaths on my Facebook newsfeed this week, so heartbreaking. My prayers are for all the friends and families affected. If you haven't already, pleeeaseee sign up- or at least consider signing up for organ donation. You won't need them when you're gone, but someone else will. Takes literally 1 minute of you life, but you could give someone else years! 

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp

Secondly, after having my two week IV course a few weeks ago, I am feeling awful again! :( This is so NOT the situation I wanted to be in at the moment! Just a few weeks until my wedding, when I was planning on trying to gain as much weight as possible, I'm struggling to eat three meals a day again and coughing and sleeping none stop. SOOOOO FRUSTRATING!!!!!!!! Makes me so angry with my body when I try so hard to keep myself well with strict physio routines that take hours every day and never missing any meds and still my stupid body decides not to give me a break and just keeps failing on me :(

When I was last at hospital, however, they said they'd found a new bug in my chest. Maybe this is why even though I'm doing everything I should, my body still feels like crap? Going up today for an appointment so I have everything crossed so that they can give me information and hopefully new drugs that will kill this horrible bug!!!

On to happier things...!

My little bear Barney is 4 months now! And finally he has stopped weeing in the house lol. I've given him a little accessory too, his little scarf! He looks super cute in it, here's a little pic...

Also, I can cross off one more thing on my bucket list- I WAS ON TV! I went to see the filming on Celeb Juice with my friends and for one milli-second I was on TV :D I don't care that I was only a blur in the background- I'm still counting it haha ;)

IV update and business launch!

I'm coming to the end of my 2 week course of IVS. Have an appointment on Weds to see if my lung function is up enough for me to stop them. I'm still quite tired and coughing a lot at the moment, but my appetite has increased yaaaaaay!! Hopefully can get somewhere close to 50kg for my wedding :)

Speaking of wedding, it's just under 7 weeks away! I feel like that's still a long time, but i'm sure it'll fly by.

Also, last week I launched my own BUSINESS! Yes, I am now officially a business woman. It's called Short Bark and Sides and is a dog grooming business. Check out my facebook page and website and let me know what you think :)

https://www.facebook.com/pages/Short-Bark-and-Sides/120522034804277?ref=hl

www.shortbarkandsides.moonfruit.com

Having my own business is going to allow me to work in my own time, at my own pace, and when I'm feeling up to it. I could never work a typical mon-fri 9-5 job as I would be absolutely K.Oed after the first day! My CF in the last few years has dramatically changed my abilities to work and at first I worried that I'd never be able to do anything with my life except sit on my arse all day scrounging benefits. But thankfully my family and friends have helped and supported me in creating my own little business that gives me some independence and joy. Now all I need is clients... ;)

Take care xxx

Feeling rough!

So I finished my 2 week course of Septrin, an oral antibiotic, and felt no better. Therefore I went up to Brompton yesterday and had another lung function and the usual weight, sats etc. My lung function had dropped a bit, but thankfully m weight had increased a bit! We decided that I should start home IVs, so now I'm on Tobramicyn and Meropenum again. This should hopefully be my final IV course before my wedding!

This morning I felt sooooo rough, my chest was really tight and I felt that my airways were inflamed. Hopefully it is just a sign that the IVs are already starting to work to get me better. It's going to be hard to relax for these two weeks as I have a lot to do for my wedding and I've got friends wanting their dogs groomed- just waiting for my table to arrive :) But I am going to try and get as much bed rest as possible.

Last night, for the first time ever, Barney managed to jump up onto the bed! He's been too small to clamber up before but now he is big enough. I can't believe how fast he is growing! I'm hoping to get him booked in for the chop next week, as he's already humping things haha

xxx

Barney Bear!

In my last blog, I wrote that there might be a little bundle of joy coming soon... and on valentine's day me and Al bought our little pup Barney home! He's a Portipoo (portuguese water dog X poodle), in photos he just looks like a black ball of fur haha. We've had him for a week and a half and we love him soooo much!!! can't believe I finally have a dog :D

My chest is pretty bad at the moment, along with my arthritis :( so yesterday I went up to hosp to see if I could get something to try and help my chest. I was short for time as we had a dentist app in the afternoon so the docs and I decided to try an oral med (septrin) for two weeks and if I hadn't improved then I'll go on IVs. If we weren't short on time, I'd probably be on IVs now but usually if you start IVs, you're up the hospital for about 6 hours, whereas if you just go on orals, you're there for around 3.

My results from lung function, sats etc were... lung funtion: FEV1- 63% FVC- 87%, O2- 97% and weight- 47kg. Lung function and O2 levels were ok, but I'm sooooooooooo gutted about my weight :'( it had taken me over 3 months of hard, hard work and constant eating of junk food just to put on that 1kg and within 3 weeks it has gone! So frustrating. My target weight of 50kg for my wedding looks less likely to be achieved at the moment.

My chest hasn't been helped by all my nebulisers crashing out on me either! Plus the cold after cold after cold I've been getting like everyone else :/ can't wait for warm weather lol :D I think Barney knows I'm particularly ill today as he hasn't left my side all day bless him <3

moan over lol...

I've now completed my dog course too. At the moment I'm recovering from it lol, but as soon as I'm better I'm going to start up and do some grooooming. Plus my bridesmaids are kitted out now and look beautiful :) xxxxx

DISTINCTION!

Had my written part of my dog grooming exam yesterday... AND I PASSED WITH DISTINCTION! So happy! Just have the two practicals left, then another written exam in a few months :) I'm also so pleased with how my chest has coped. There have been difficult days where my bones are aching and I'm coughing all the time, but generally my body has been good and allowed me to do this course in peace :D I've switched back to my Azli nebuliser (I alternate each month with Tobi) so I'm hoping it will give me a little kick in the right direction.

The wedding plans are coming together nicely too :D Most of the invites are done and some have been sent out... look out for yours ;) I'm trying to convince Alex to let us get doves to release after haha- he's not too keen atm but watch this space :P

Also, there may be another little surprise on it's way... (not a baby!)

Keep well xxxxx

Hospital and dog grooming course update

Been very busy recently with wedding planning, my dog grooming course and general life. Went hospital last week and was surprised to find my lung function had gone UP! FEV1 was 72% from 69% and FVC was 97% from 96%. My weight had also crept up to 48.4kg :D 

The stats are good, but these last few days I've been feeling so rough. Aching all over and my chest is really bad, constantly coughing. Also my appetite has vanished and I can barely eat breakfast or lunch most days :( Got a feeling that 48.4kg is gunna drop :(

However, I'm not going to go on IVs or go into hosp just yet, I still need to complete my dog grooming course :) I'm about half way through at the moment, and I love it so much! Learning so much about grooming and dogs in general. Once it's completed though I think I'm just gunna collapse in a heap and sleep for a month haha. It has proven to me that there is no way Id be able to do a full time 9-5 job at the moment. Just doing 2 days in a row at the dog grooming course knackers me out so much that I fell asleep on the train home and missed my stop lol! My plan is to work from home where I can work on my own terms and times, with Alex's help :) That way, I hopefully won't get ill from working long days and over doing it. 

xxxxxxx

Quick update

I've been working sooo hard to try and keep my chest as good as possible so I can complete my dog course. I've got a month left of it, so I hope I can keep well for just one more month! Overall, I feel as if my hard work is paying off because I'm still able to go out to the shops and get through each day of my dog grooming course, but I have noticed that as soon as I'm back I could sleep for days lol. Also, due to this cold spell, my joints are so painful. Especially my knees and ankles!

Thankfully I have MY WEDDING to organise to keep my mind off the pain though!! :D :D :D Can't believe I'm going to be a bride!!! Me and Al are in the middle of looking at venues at the moment. And finally, the new house is becoming straighter now :)

Christmas, New Yea, moving, dog course...

Seems like agesss since I last blogged, so much to catch up on...

Christmas is over for another year :( hope you all had a great one! I did :)  saw most of my family and alex's, had yummy food and lovely presents. Also, on Christmas day Alex proposed to me! Asked my Dad, down on one knee.. the whole shabang! :D wooooooooooooooo!!!!! Go buy a hat!!!! ;) Here's a lil piccy of my beautiful ring <3

People always say "you'll be able to put on loads of weight at Christmas with all that chocolate!" but Christmas has the opposite effect on me :/ You see, when it comes to food I have a strict routine with myself- I get up quite early and have 3 meals plus snacks in the eve in order to try and fit in ll the calories I need. When Christmas comes around though, there are a lot of family do's that usually start around 2 and the food will b served around 3 or 4. So I can't fit in my three meals a day :( It's frustrating, but I'm trying to get back into my routine now that Christmas and New Year and the move are done.

New Year was great (from what I can rememeber...) was waaay too drunk lol! Spent it with a lot of my friends and some family <3

Jan 2nd, me and Al moved into our second place together :) I love it so much! It's much more homely and spacious, perfect for us. Frankie and Angel seem to love it too :P

Yesterday I had my first day of my dog grooming course. I was in heaven lol, there were the cutest pups everywhere.. Standard poodles, miniature poodles, miniature schnauzer, beagles, yorkies, collies.... ahhhh was amazing! I dried and brushed a standard poodle and washed, dried, brushed and clipped a collie yesterday. The day flew by, I couldn't believe it lol.

Alice, the poodle I dried and brushed

Bruno after being washed, dried and brushed

Bruno after being clipped