I am writing this from my iPhone so it will probably end up a bit jumbled as I'm still not used to it and it seems to guess what I wanted to write and changes it without me realising it!!

I came on her with intentions to write a blog, but once I get on here I see everyone else's blogs, read them and realise whatever I write is not going to be as interesting as everyone else's!

My work rota has come out for Christmas and new year st last, it's the first time I have ever had to work over this period at all, I am so used to in the past having a full 2 weeks off over this period! Anyway it works out quite nicely as I am one of the very few people to get Christmas day off!! I am however working 8am - 8 pm Xmas eve, 7am - 3pm boxing day, till 10 pm new years eve and from 7am new years day! So won't be seeing the new year in very traditionally, I should imagine one drink at midnight then bed! What I really am looking forward to is the first proper works Xmas party I have ever been too, it sounds pretty crazy! So I am having some pre- drinks and food at my friends before then her boyfriend Is taking 4 of us there then Marc is picking us all up and bringing us back!

Christmas is going to be strange this year now my parents have split up! Still looking forward to it though!

What else has been going on? My car pretty much died the other week bless it! It was 13 nearly 14 so upgraded to a 10/11 year old vw polo metallic blue, it's gorgeous and I love, love , love it! Taken it out for a drive this morning and done last bits of Xmas shopping I can do with Marc! Tonight im going shopping with mum and one of my sisters as I need to buy a dress and some stocking fillers for Marc! Anyway I'm off to sort lunch hope everyone is well xxx

Great South Run

Just a short sweet message to say a very good luck to one of my friends that are running for Cystic Fibrosis today! She will be running along with my sister and my name written on her back! She has raised about £250 with a promise of more from her family once she has completed :)
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=KatieThomas4CysticFibrosisTrust


xXx

Iv time, hassles and bonuses.

So I started Iv's Monday, first time ever being day cased, literally had a blood test had the first doses of my Iv's (Fostfamycin and Tobramycin) and was sent on my way! It all seemed very organised. My hands had started tingling after my meds but I get this tingling sensation in my hands quite often and randomly when I'm not on Iv's and it usually stays for an hour and goes. I keep meaning to see a Doc about it but then forget till it happens again! This time I happened for 8 hours and I was starting to pannic.... was it a reaction as I am allergic to a lot of Iv's? Had something happened to the nerves in my hand? Was it going to stop?!! When we got home Mum did some research on the internet and it came up as a common side effect of high blood sugars, which I am borderline and I'd eaten a lot of chocolate that day and they had started putting my meds in Glucose instead of water for the first time ever....so maybe? So I told them I wanted my meds in water from now on and I have been fine so far so fingers crossed!

Anyone who reads my blogs will know I have a real phobia of needles and I can't deal with blood tests. Monday my port bled back fine so no concerns..it has been bleeding back all year so I had no concerns but then yesterday it decided to just stop! I was so angry/ upset and ready to just give up the Iv's. My nurse then tried a blood test, knowing how phobic I was and she missed my vein and then was wiggling it about trying to get it in a vein which was horrid!! So then I didn't want her to have another go so had to wait for an F1 blood testing doctor who was amazing and had a good old feel and got it in one! Thank goodness because I was so worked up I felt like I was going to be sick! So that was that over but should Imagine I will be going through it all again for blood tests next week!

Next moan, the home care delivery company! Guess what time they delivered my fridge meds that we had been waiting all day for 00:30! and they rang the house phone when they were near and banged on the door loud enough to wake my 2 little sisters up! Really quite ridiculous!

Anyway now I think we're sorted and should have a good few weeks. Marc and my grandparents are over tonight as we are doing a family come dine with me! My littlest sister is starting tonight and she is making leek and potato soup, pizza and salad and harribo cupcakes! so should be good! I also have lots more planned for the 2 weeks, start some diploma work, help Mum sort and tidy there house up, get some mega good physio's done, paint my nails, sort out my wardrobes, take some nice pictures of the family..(ready for Mums xmas present shhh..) watch some DvD's and see my friends that I haven't seen for ages and oooh hopefully my iphone 4s will arrive, never had an amazing phone so super excited!

Last thing to report was there was a small tornado in our area yesterday evening, I didn't see it but lots of people have put some awesome pictures on facebook and it made the news so bit of excitement for Sussex.

Hope everyone is well! M x

Another Step Forward...

So recently I was complaining that Marc and I seemed to be taking one step forward and two back, well that continued yesterday where I felt we took a massive fall backwards, for Marc's medical tests for this job, he found out he needs even more tests, which seems to be becoming relentless and he feels like he is slowly losing grip of this dream of his! My Mum has had to reluctantly try and sell her horse due to lack of funds and no-one about to look after my little sister since my Dad moved out. Well this was going well untill the vet check on the last hurdle just before a woman was going to commit to buy, announced he was 5/5 lame, which is an incorrect judgement so Mum is getting a second opinion but the lady has pulled out and doesn't care for the second opinion! gutting as she was so sure this lady was going to buy and was kind of relying on the money coming in as she is rather broke, and I had spent the whole night before last up coughing, so out of the possible 5 hours sleep I could have had, between My late and early at work, I probably had an hour of actual sleep so felt exhausted and emotional and everyone else's stress and problems were just as much my own as why is nothing going right for the people I love and deserve it the most. Then my Granddad phoned just for a chat and ended up telling me one of his close friends had had 2 heart attacks in the week, recovering from the first but being left presumably brain dead from the second, with very little hope of recovery, which put all of our other worries into prespective and made us all feel even more down and with that I snuggled up to Marc at 8pm with a DVD (toystory) and our duvet and was fast asleep by half past!

Today has been possibly a more positive day:D Marc has found out if he does need these tests he can get them in the next week (will have to pay but will be worth it) and then hopefully that will bring a positive conclusion that he is fine! Mums seen a few experienced horse people today and they have all said there is no way Freckles is lame so she is more hopeful that the next person to come along will actually have enough experience to see he is no way lame. And the third positive contributing to my step forward and something I shouldn't really say as it might jinx it but what the hell, I'm excited! There is a slight chance I'm up for promotion next year, found out you have to be 21 and my manager was hinting that they will be needing someone immediately after my 21st and they will be asking our team first then she kept hinting for me to make sure I attend certain meetings in the next year so keep your fingers crossed for me!

Lets just hope tomorrow continues with the steps forward and we have no more steps back!

CF at work, Marcs dream job and my Sister and her CF

I wanted to come and just write a really positive message about my job. I work in a children's care home with Children and young adults with learning disabilities as I think I have probably mentioned before. Anyway, I work a set 40 hours a week, which I just manage with and it is most of the time great! We took some of them on holiday last week, which meant I got to go as one of the staff:D We went to centreparcs, On Holidays the shifts are done different and most the staff work 7am - 10 pm everyday, or they swap about so one day of the week they do a shorter shift. Luckily they organised for me to have the only double room available, the only one with a TV and I did a 9am - 8pm shift everyday, so I had 2 hours in the morning and 2 at night where I could go and sit on my bed and do my physio and my nebulisers whilst watching some TV. It was really good. And I stayed well! Then they would come off shift at 10 pm and we would sit and watch TV together for a bit, which I could relax knowing I'd done everything then off to bed at about 11 ready to get up at 7 again the next day! So I just wanted to share how well they had worked around my CF. All the staff were interested in what I had to do, but not to a nosey point, they would just ask a little more each day. Now I feel totally comfortable around all of them which is really nice for our work environment. I am back home and to my normal hours now, which is great as I missed Marc like mad, and just being at home.

Marc is still in the middle of the different medical tests he needs to pass to get this dream job of his, the last few months we seem to have taken a giant leap forward and then rolled back but now we seem to be slowly moving forwards so If people could still keep there fingers crossed for him that would be great then I can talk about it without worrying I'm going to jinx it!

I've got a hospital appointment Thursday, bit annoying as I can't lay in on either of my days off now as Fri I have a jab in the morning, but o well, these things have to be done. Then I'm in for planned Iv's on 24th Oct:( I planned them because I have to work over xmas and I do not want to get ill, plus it's been a whole year since i had any Iv's which I have been lucky but I seem to not last after the orals at the moment so need a boost! I hate Iv's I seem to become an emotional wreck, my needle pops out my port pretty much everyday though I'm trying some new needles this time so fingers crossed... Plus I don't want to stay in at all because it is so far away from home and I become a nervous wreck, I just don't trust nurses, except my actual CF ones which is really bad, but have had some experiences!! so I'm going to ask If I can just sort it from being a day patient, probably not but worth a shot!

My Little 9 year old sister had to go to hospital yesterday, she also has CF but seems to suffer a lot more with the stomach side and she had another blockage which was causing her to sick up some pretty nasty stuff, they gave her 3 movicols to drink and upped her lactulose stuff which I think has done the job, thank goodness as she has had 2 serious blockages since she was born bless her, I hate seeing her ill, luckily her lungs seem to be a lot better than mine ever were, how strange how differently CF can affect each person and it also shows how much more advanced they are with treating the younger generation. I'd love to post a picture of her here from a show I watched her in the day before she went to the hospital with the blockage as she did so well and looked absolutely beautiful and smiley even though she had really bad tummy pains the whole way through! But I don't know how too...so with that I will say good bye and if you are still reading sorry if I have bored you beyond belief but thanks for sticking with it!

Lungs are calling for IV's!

I felt absolutely fine 3 days ago, then my line manager got a chest infection, I thought through my supervision she was coughing a bit so sat as far away as possible, then an hour later when I tried to phone through to where she was I was told she'd gone to the doctors as she thinks she has a chest infection...great. So no surprise last 2 nights I haven't stopped coughing and last night I woke with some random pains in my lungs I haven't really felt before and my stomach was really hurting in a different from usual way too, managed to sleep in till 10am this morning so feel a bit better and luckily I have my 2 days off now so it's into lounge clothes and DVD's with Marc for 2 days then we're out bowling tomorrow evening for a friends birthday, and I am looking after the sister's so they are coming then staying over too. Started myself on antibiotics last night so can't wait for them to kick in and I am going on IV's last week of Oct if all goes to plan. Hope my needles stay in my port this time (unlikely) but I've had it completely checked out via a lineogram and there is no reasons for it to not be staying in.

Luckily Marc's got these 2 days off too and he needs to relax as he is going on a 24 hour blood pressure monitor just as part of a medical for his job so we can both completely chill out and I can be on the mend and he can keep his BP down.

Busy Long weekend

On Wednesday I worked a 13 hour shift and this meant I got given Sunday Off, I'd already worked last week on my day off so had been granted this Saturday off and already had my normal Thursday, Friday off. Making this a very lovely long weekend off!

Thursday I went out for lunch with Dad, this was lovely, hadn't seen him for ages because I didn't want to meet his new girlfriend and he has broken his collar bone so can't drive. I picked him up and we went to a local brewers Fayre. I got chicken, bacon, cheese and barbecue sauce with chips, salad, garlic bread and coleslaw. On top of this we ordered onion rings! We got 20 each and both eat them all! Felt ill after, but still, it was quite an achievement!

Friday I went out for breakfast with Marc and his best friend. It was buffet for the hash browns, beans, tomatoes, egg, mushroom.... so eat lots of that but I was still hurting from how much I ate the day before so I eat half a ration of bacon and couldn't even touch the sausage. We didn't need lunch then went to my Mums to surprise my sister for her 9th Birthday, We'd bought her a bike and wanted to hide it in the lounge before she got home from school. She was very surprised (especially as it was a day early) and took it out to show all her friends that were still at the park next to school. We then went out for buffet Chinese, which is amazing and I stuffed my face again (For the last time in a while as I really won't fit in my wedding dress next year!). We then went to some amusements, won two voodoo doll key rings on the 2p machines and won a teddy on the claw machine which had a £5 attached to it, win!

Yesterday went to the boot sale, not very much there as it was the last one and wasn't sure the weather would hold. However got 2 DVD's for myself and 1 for someone at work! Marc got a griddle frying pan that he has been wanting and his sister got some maternity clothes and baby toys...I get so broody it's unreal! We then had lunch together and went for a walk with Marc's sister and sister in-law and nephew who is also gorgeous and makes me broody, they took there dog's too who are soo excitable. I was feeling really exhausted, legs hurt and lungs ached but I pushed myself to keep up and no-one ever see's me struggle, except Marc but that's because I moan and moan and moan to him ha-ha... Marc and I then cooked a nice healthy dinner together of smoked haddock, mash, broccoli, cauliflower and leeks. So we're now in to our healthy eating plan which started yesterday and I have planned meals for at least a month...this is to help with his medicals and my fitting in to my wedding dress next year.

Today Marc and I have been watching remembrance documentaries for 9/11, the new ground zero re-build looks amazing and the effort put in is astonishing. The stories of all the lost loved ones is so hard to watch but everyone should to get a real feel for those people and what went on that day. 10 years on, R.I.P to all those lost. Later on I'm going to a fate that both my Mum and Dad organise (awkward) to raise money for the bonfire society that they are both members (awkward again). Annoying thing is is we keep having really heavy showers so don't know if it will get very busy! And we have to park in a field so I'm sure I will get stuck if it gets too boggy but I'm going to go and I'll spend a £10 to help them out and you never know if I have the same luck I had at the amusements I could win something!

Hope everyone else has had a nice weekend!

Where to start....

Well I think the best place to start is by writing about how I bought my wedding dress last week! It is beautiful, can't go in to too much detail in case my husband to be stumbles across my Blog, I must say though my CF shaped figure was rather inconvenient. A size 12 dress was too small for me in one style yet the style I ended up wanting she said the size 8 was too small on my hips and bum but fitted perfectly round the rest of me, we ended up getting a size 6 (which I never am and never will be that size) but it fitted my bum and hips perfectly and she showed me how to do it up at the top which also made it fit perfect everywhere else. O how I love my tiny bum and legs but huge pregnant like stomach (which I am not , pregnant, just to clarify). Luckily the woman was very helpful and showed me how to hide all the unwanted bits haha. Wow can't believe it is coming round so quick and I am getting married next year! It is so exciting, we seem to be very well organised at the moment, that's what people keep saying anyway, they just don't know that we have put deposit's on everything and are hoping we will somehow be able to pay for it all ha!! I know we can do it and it's going to be the best day ever.

I also went to Madame Tussauds Sunday, that was pretty fun, definitely trying to plan a whole day trip to London now, especially as I have a merlin pass and a pass so I can take a carer and my sister's and Mum have them, so cheap days out. we have already got our moneys worth since we bought them in April we have done Chessington twice, Thorpe park once, three days in Alton Towers and now the Madame Tussauds. Mum got them on her clubcard points from Tesco's so well worth it.

My partner is in the mid of trying to get a new job, another thing I can't write too much about as he is so close and I really don't want to jinx it for him. Just be keeping your finger's crossed! So that's another really exciting thing.

I am in the mid of writing up a month's healthy eating plan for the both of us, I can't afford to put on any more weight, I do usually stay the same so it's good but I would like to eat a little healthier as sometimes we both just end up binging on chocolate! and prawn crackers is our latest thing, a huge bag as an evening snack lol. My partner has medicals coming up for this possible job so he wants to get super healthy, he is physically really fit and runs alot, goes cycling, rowing machine at his present work a lot so he wants to keep that up but just eat a tiny bit healthier e.g bring more fish into our eating and lots of different vegetables. We do eat well anyway, our portions could just do with a little down sizing really. So will keep you updated on how everything goes.

Other than this I am busy working 40 + hours a week. I have my little sister's Birthday coming up and can't wait to give her the bike we have bought her, then we are going to cosmos for dinner:) the healthy eating starts the day after of course! Me and my partner amaze everyone on how much we eat at cosmos, it's the best ever! especially as Chinese is by far our favourite take away and cosmos is all you can eat!!

Sorry when I write it's just all over the place, random thought's and doings from the week but that's how my mind works, constantly thinking and randomly remembering things, I live off too do lists otherwise I'd forget to do everything and anything, I blame CF for this too as we have a lot more to remember than a lot of people like all the meds that keep us going!

Take care all, especially as I think we can all feel the dreaded Autumn/ winter coming, well before it's due date! (did it even ever leave?)

Good morning:D

Good Morning everyone, hope your all well! I'm in a rather good mood this morning:D Last week I went through a very depressed period of 3 days crying about things that were getting to me. Isn't it weird that you have all these feeling and things on your mind that when your in a stable mood you can just kick to the back of your mind, yet you get on some antibiotics (Linezolid and Ciprofloxacin) and your emotions just hit the rocks and everything seems a hundred times worse, unresolvable and all you can do is cry and feel sorry for yourself. On the second weeks of my IV's now, the emotions are pretty stable again, the mucus production has gone down a lot! But the thrush that is now in my throat and on my tongue is causing an irritable cough and my lungs are for some reason very achy.

Heard some good news yesterday, not going to share as it's not final yet and I don't want to jinx it, but it's to do with my gorgeous fiancee, so just keep your fingers crossed for him anyway!

I'm in the middle of glucose test at the moment. I had the initial blood test, thank you port for bleeding back and please keep it up for the next stage. I drank the disgusting thick syrup sweet sticky drink and had a chat with my nurse about work, parents and life. I told her the bloods I had done before on the small testing thing and she thinks they are running high...eek. Please NO! Wish me luck, I'm an utter phobic of needles and diabetes would be a real struggle for that. Anyway so she is back at 11am for the other blood test which she will then send to the labs where the check to different things to see if it's diabetes or not. Apparently my last proper test showed one part was high but the other was okay ... I also have lung function when she gets back which I'm nervous about, I just hope it's not down too much! Or at all really, it always worries me.

I have a meeting with the surgeon on the 1st September , about changing my port, so nervous about all this. I wish I didn't need to but it is the best for the long run. Will be able to have Iv's hopefully without too much stress. My port needle always pops out when I have Iv's you see. I'm just very scared about having to have an operation and a needle in my arm to put the anaesthetic in. Then what if the port isn't as good as my current one? Anyway will no more on the 1st!

Hope everyone is keeping well, Take care.

Nothing ever goes to plan....

I rushed home, obviously sticking to the limits, as I wanted to get home to join my fiancee and his best friend in the beer garden on what is a beautiful sunny day! Half way home I realise I have accidently brought home the safe key and I'm not on until a late tomorrow so I have to drive all the way back to work then drive all the way back home again, I finished work at 1500, home by 1610, that sucked to start with. Then as I pull up outside mine I ring to see if there still at the local and nope he is on a call....so instead of pubbing it, like a good girl I go home and get straight on with physio and tobramycin (nebulizer) as we have plans to go to the cinema. Film starts at 18.15 so plenty of time....only his call turns into 3 calls in a row and still no Marc on the scene:( Now my sisters and Mum are on the way, and we all feel too guilty to see cars 2 without Marc, we are all pixar geeks but cars is Marcs ultimate favorite.... we will decide what to do once there here.... Nothing ever goes to plan....especially when you're with a retained firefighter!!! And he jokes about staying on call on our wedding day, and people wonder why we are having our wedding half hour away from this area!!

Not only am I stressed because of this, work has been MANIC the last few days, can't really explain as confidentiality and all that, but lets just say today someone left a tap on and the roof caved in in the kitchen where I was working.... and Sunday gone was even madder than that but I cant go into details...

Off to cinema, maybe? Then dinner, then home to get some well needed sleep before my 6th day work in a row tomorrow! Those 6 days including one 11 hour shift yesterday! yawn! and to top it all off I have a cold brewing! However on Friday it's 2 whole months off any antibiotics or iV's so we're chineseing to celebrate

Fun day, work, friends, CF, antibiotics...

Yesterday we had a fun day at work, it was fab! We have different groups at work and in our groups we had to dress up, we dressed up as surgeons. We then had to play team building games, they had a blow up bungee run, three legged race, egg and spoon race, quiz's and we had to build something out of boxes, which we made a train and it was the only competition of the day that our team actually won! That was from 11am - 2pm, I then had to stay on for the late shift 2pm - 10pm, so yes exhausted when I got home!

It's really annoying all my uni friends are back home and keep inviting me out to do things, all of which I'd love to do but I don't get the summer off like them, obviously, and my two days off I usually do something one day and nothing the other so I don't get ill, I use that day to catch up on sleep, relax, tidy a bit and do extra good physio's. So I have to keep saying sorry I can't and it's annoying as I desperately want to see them! Luckily we have finally come up with a date that we can all meet up, 29th July so we are doing lunch and garden games e.g. badminton which I LOVE! That night I then have a wedding reception to go to to so busy busy busy! Last week I spent my day off travelling to London for a CF clinic and annual review follow up which I wrote about, this week I have to go for a scan on my day off, then the other day I made plans to do wedding stuff, so no day of nothing again!

I have a really niggling cough, which I had when I went for my annual review follow up, but my lung function was fine, so they had no concerns. The cough is still here and I dont know what to do! I told my Doc that I have antibiotics 6-7 times a year and he said that's a bit too much and maybe i have them too soon before I need them, so Im trying to drag out this time as Im kind of concerned I already have had 4 lots, though I needed them as I got very ill when my parents split up and I started my job etc! Don't know how long to leave it? Perhaps I will arrange a Lung function again in a couple of weeks! As soon as that starts to go down I reckon I need something!

Hope your all well and massive thoughts with Kirstie who received her lung transplant yesterday and begins the recovery procedure's today! Take care xx

Fun day, work, friends, CF, antibiotics...

Yesterday we had a fun day at work, it was fab! We have different groups at work and in our groups we had to dress up, we dressed up as surgeons. We then had to play team building games, they had a blow up bungee run, three legged race, egg and spoon race, quiz's and we had to build something out of boxes, which we made a train and it was the only competition of the day that our team actually won! That was from 11am - 2pm, I then had to stay on for the late shift 2pm - 10pm, so yes exhausted when I got home!

It's really annoying all my uni friends are back home and keep inviting me out to do things, all of which I'd love to do but I don't get the summer off like them, obviously, and my two days off I usually do something one day and nothing the other so I don't get ill, I use that day to catch up on sleep, relax, tidy a bit and do extra good physio's. So I have to keep saying sorry I can't and it's annoying as I desperately want to see them! Luckily we have finally come up with a date that we can all meet up, 29th July so we are doing lunch and garden games e.g. badminton which I LOVE! That night I then have a wedding reception to go to to so busy busy busy! Last week I spent my day off travelling to London for a CF clinic and annual review follow up which I wrote about, this week I have to go for a scan on my day off, then the other day I made plans to do wedding stuff, so no day of nothing again!

I have a really niggling cough, which I had when I went for my annual review follow up, but my lung function was fine, so they had no concerns. The cough is still here and I dont know what to do! I told my Doc that I have antibiotics 6-7 times a year and he said that's a bit too much and maybe i have them too soon before I need them, so Im trying to drag out this time as Im kind of concerned I already have had 4 lots, though I needed them as I got very ill when my parents split up and I started my job etc! Don't know how long to leave it? Perhaps I will arrange a Lung function again in a couple of weeks! As soon as that starts to go down I reckon I need something!

Hope your all well and massive thoughts with Kirstie who received her lung transplant yesterday and begins the recovery procedure's today! Take care xx

I have a little bit of spare time to write whilst I am doing my Physio and getting ready for work. I have a day off tomorrow which I desperately need, I will just sleep literally all day. My partner is working so I'm just going to waste the day until he gets home. We then have his sister and her partner over who have just announced she is 3 months pregnant! Yay so exciting. Then Thurs and Friday I am working and we have my partners best friend over for dinner Friday night, Sat we have my best friend over for dinner and Sun I am going to one of my family friends house for a BBQ! So a busy weekend but its rare that I have a weekend off so we are making the most of it!

What else has been going on? Well My partner and I spent two weeks in Spain, came back last Monday. It was brill, we mainly relaxed but also did lots of swimming and quite a lot of walking either to markets or the local bar. I found the heat brilliant in the day but it took my breath away at night and made it really hard to sleep! It was 41'C on the hottest day!!

Then once back, on the Thursday I had a hospital appointment, went quite well really. To start off I had a different doctor who was fantastic! lung function was 2.12 (70%), Xray had no change, liver slightly fatty (no concerns though), calcium and vit D levels really good. The only issue was my glucose levels they want to do as something showed slightly high, so we will do that soon. In the meantime I finally encouraged myself to do the finger prick blood tests and check them out. I did 5 so far and all the readings have been fine except the one before lunch where it was 3.3, it has been thought in the past I go hypoglycaemic as I get dizzy ish, shakey, a cold sweat and tingly and HAVE to eat when I feel like that! So that was just proof that all those symptoms mean I'm low! Hopefully not diabetic though - I am going to send the results to my dietician. Lastly we discussed changing my port as mine has been pants for my last few admissions and I finally plucked up the courage to start thinking about a new one! Think it's going to happen this year!! As I said I want it before I get married so I can have some IV's and get seriously well before wedding and honeymoon! I have to have a scan first to check for blood vessels!

On to the wedding 11 months and 4 days...eek! Yesterday I went to pay a 2nd deposit at my venue but it was a right shambles, the person had gone off work sick, so couldn't pay and we left, back to Mums and I realise I left my card there so all the way back and still no deposit paid! Anyway we are going to try on the 15th July now! We are also going to some travel agents to find options for honeymoon wahoo! All so exciting!

Anyway I best get on with some more physio, tobi and lunch before heading to work for a late shift! Take care all xx

Cystic Fibrosis decided on Tuesday last week to make me aware it is still there and I can't just get on with life without having days of feeling extremely poorly. It didn't ease me in nicely, it just sort of said 'you have been really well for 2 whole months now you are going to pay for it' and that night I got home from work at 22.45 did a Physio, had my nebuliser (Pulmozyne), got in my pyjama's, took my make-up off, had 4 tablets (Omeprazole, Domperidone, Singulair) brushed my teeth and was in bed by 23.30. Usually I would then fall asleep absolutely fine and sleep till my alarm clock rudely awakens me. Well I laid down and the coughing began and it would not stop, I tried a cold drink, a hot drink, sitting back up, blowing my nose, having my inhaler (all the things that usually work) but I didn't stop till 2.30 am. My alarm then went off at 5am and I dragged myself out at 5.20 feeling extremely tired and achy and once again coughing! Wednesday night I immediately put myself on some antibiotics I had already stocked my house up with, Linezolid and Ciprofloxacin. I didn't sleep for about four more nights and the antibiotics made me feel sick and you have to have them an hour away from my other tablet Omeprazole and can't have with tea and even when it's been an hour apart it still seems to make me feel sick. I was SO well for the 2 months, I think it was swimming in the swimming pool at work that made me ill as it was sooo warm, like a bath and I stayed in for 2 hours and I was quite sniffly and eye runny after. Now I have a real achy left lung and a crackly cough, not so irritating and I'm hoping the antibiotics are shifting it which is making it crackle more. I'm a little concerned about the achy lung but I think that might be the excessive physio's and coughing I have done this week. My left lung is ALWAYS the worse one, if I feel phlegmy or just coughy its always the left side where I can feel it. I feel pretty lethargic at the moment and I get really agitated when I'm ill and stressy towards those closest to me (maily my poor fiancee who always has a way of getting me through it). I think the reasons behind the agitation is more fear.....what if I dont get back to as good as I was before this infection, what if it becomes more serious, what happens when I do get to that stage and can't work, what if it ruins the chance of me ever having a baby...Two main things I am are ambitious and maternal and I know Cystic Fibrosis can control those two things in my life more than I can. I can do all my medications everyday as I do, I can exercise and do everything in my power to keep well enough to work and one day have a baby but sometimes infections come along and just take all that effort you have made to keep well away, I have seen it happen to people with CF and it's one of my biggest fear.

If Im too ill to work and my fiancee and I have a mortgage by then, I will have to just rely on him and I hate that, he is reliable, completely but I want him to be able to rely on me to. Then if we manage to have a baby, and I can't go back to work after that then he has me and the baby, himself and the house to pay for and no offence on him but his jobs aren't financially enough for that at the moment and the one dream job he wants is firefighting full time which he does part time and he just can't seem to manage to get in to it and each time he doesn't manage I see him fall a little more apart. He wants it so bad.. I want it for him so bad.

If my health wasn't bad, I wouldn't have these worries because I really enjoy working and I can earn enough to pay half and he could stay with what he is doing and pay half and we'd get along just fine.

O dear, my achy lung is really bothering me now, what can you do with an achy lung it really aches when I cough so physio shall be fun tonight! but i'm going to go and stop moaning now! As i'm getting bored of the sound of my own voice, it just saves me moaning to the people closest to me who can see when i'm feeling low or not and don't really need telling, and although they would listen to me deeply it's all stuff I moan about one day and want to forget about the next.

Summertime

Summer is getting closer and the weather over these last three days is just getting me so excited. It makes me want to make all these plans for doing my garden nicely, only we don't have the funds. I would LOVE a new shed and a bench with an arch over, a patio area and a brick built barbecue. However, I think this summer we are going to have to just mow the lawn, clean the patio that's there and get the barbecue cleaned up that the parents gave us last year. All still very nice, and if this weather today is something to go by I shall be happy everyday!

Today is my second day off, yesterday I had a day off so I had my hep B jab part two, went fine! Then I went to my Nan and Granddads for lunch which was lovely. I then went and picked my littlest sister up with my Mum, they had a fate on at the school which was sweet and then we went and sat in the garden for a few hours, the ice cream van came up to the close where my Mum lives which just screams out SUMMER! Today I am getting my hair cut, I have decided to not drive but take a nice LONG walk to the train station, get a train, get a cut, see one of my friends and her beautiful baby and then get a train home and another nice long walk home. I need the exercise and in this weather there is NO excuse, plus you never no, might get a tan.

It's 2 months till me and my fiancée jet off to Spain now, Can't wait! 2 weeks in beautiful sunshine messing about in the pool, eating lots of food, drinking lots of wine and Malibu and pineapple and just relaxing together.

Another bonus for me in the summer, is my health tends to stay better. Lets hope it's the same this year!! I'm trying to go at least 2 months between each course of antibiotics as I think I have them too regularly, I don't want them to stop working because I'm too used to them. I have been about 5 weeks off anything now, so another 3 will be good. Though I have been a bit up down the last few days, extra tired and a bit chesty but I'm going to try and do good Physio's and exercise and see if I can get a Lung Function done in the next week.

I best go now, hope everyone is well and enjoying the weather.....x

Sometimes it takes something really awful in life to realise just how lucky you are..

So that's a pretty long title I have put for this but I quite frankly didn't know what else to put it as. I have quite literally been crying my eyes out for the last twenty minutes for someone I don't....didn't even no.

My little (middle) sister of sixteen years was sent home early from school today. One of her quite close friends had hung themselves at home this morning. The whole of her year and half the rest of the school are in a mess of tears and confusion. It makes my stomach turn and eyes well up just thinking about it. I think me being a youth worker before and working with young people it just makes you really think. I wish there was more you could do to help young people like this, I know that there are so many places they can turn for advice and to chat but there too scared and it's so sad. It probably needs making more clear to young people where they can turn.

The amount of friends this young man has had crying over him, they didn't even no he was in this state of mind. My sister has been crying all day, I can't wait to see her and give her a cuddle.

You feel so stupid crying for someone you didn't know, that's why I'm writing it here. Here it doesn't matter if I seem stupid.

Basically my love and thoughts go to this poor young man, his family and friends. The guilt that so many are probably feeling but probably shouldn't, the sadness and the confusion. I can't imagine how those closest to him are feeling and how they are going to feel for a very long time.

It just shows even those closest to someone don't know what they are thinking and how they are feeling. Especially at that age, depression can so easily be put down to just being a teenager.

My sister and her friends just went and put some flowers outside the school for him, they were the first to do so. I predict by tomorrow there will be enough to cover the whole front fence of the school.

R.I.P young man.

x

My birthday week!

Well my boyfriend finds it highly amusing that I am stretching my birthday over more than a week and that I now don't call it my birthday but my birthday week! My Birthday (20th) was actually yesterday but Tuesday I went out with my Dad, sisters and boyfriend. We went to Frankie and Bennie's and it was lovely. Had a 3 course meal which my Dad paid for. It was pretty hilarious, I got really bad stomach ache after dinner so went to the toilet for a little while, in the mean time everyone else got and ate their puddings. Except middle sis who's Birthday week it is also. She came to the toilets and said hurry up, neither of our puddings have come but everyone else has eaten theirs and then I got off the loo and she decided to go quick. Then once we got back in and sat down the lights went off and they bought our puddings out with a candle lit and a Birthday CD playing VERY loud! They had been waiting for us for like 10 minutes and I had Ice cream which had now slightly melted with a candle stuck in. It was very sweet!

Then yesterday was my actual Birthday, I woke up to a cuppa in bed and lots of presents. My boyfriend had bought my flight to Spain and a gorgeous bakini I choose from Next! Going in June...can't wait! I did work on my Birthday but they let me leave 2 hours early so that was nice.

Today, Thursday I am going to Cosmo with the bf, sisters, Mum and some friends. I love cosmos, so much food!! So really excited about that.

Lastly next Friday I am going laser quest, bowling and for drinks with some mates. I can't wait! Drunken bowling, going to be pretty funny, might help me actually be good at bowling!

A quick update on health, am so pleased. I had my annual review last week! Lung Function was 2.1, pleased with that! I did the bleep test and got to level 12.6 which I am so pleased with, I was practically running the fastest my legs would carry me at that point. After I did feel very light headed and had a head ache for like the next 3 hours! But the physio was amazed with how well I am doing. I was really worried my working hours were going to have a bad effect but if anything it's helped me get in a routine and we do quite a lot of exercise at work so it's really good. Just hope it stays this way as it's still early days, only been working a month!

Hope everyone is keeping well

Take care

Mogzi x

I had to take myself away from the internet for a while and probably wont be back again for a few weeks after this post. Life has become so busy, some definite ups but some lower than low downs.

It all started, well a month ago now, which seems surreal. Time sure does fly by when your busy, each day rolls into the next without you even noticing! Well it felt like my world absolutely fell apart, now I'm much happier but at the time, I just cried....My parents have been together 25 years and them and my sisters have done EVERYTHING together. Holidays to Spain, Greece, Australia, America...huge garden parties....planning my wedding...even small things like family come dine with me. Then BOOM Mum comes over one night and Dad is leaving her, he doesn't love her any more. I stayed so strong every time I saw her, my sister's and my Dad for the 1st week, but secretly crying my eyes out the whole night to my beloved Fiance. It was such a shock and still is really but now I just deal with it. The hardest part was seeing my mum so torn apart and not feeling close to my dad. Now I'm just back to normal with my dad but me and Mum are So close. Have to be there for her! She has lots of friends too though, which im so pleased about as I'm always at work now..

Anyway dont want to go to much in to detail with that, then...the week after it all happened is the day I started my new job which I have been doing almost one month now, one month Monday! Its great and working 40 hours a week, well 49 this week is easier than I expected! Just hope my health keeps up as my LF had dropped at my last docs appointment to 1.93. Got an appointment Fri so hopefully it hasn't got any less! As long as it keeps above 1.9 I wont worry too much just prefer it in the 2 region. I seem pretty well regardless of what it says anyway.

Right that is all, I need to get on with physio, tobi and cooking dinner!

Take care all x

Weight Dilemma

In Cystic Fibrosis weight is a massive problem, our digestive systems don't work quite like the norm and most of us have to take enzymes to help the pancreas. These enzymes are called Creon and we have to take them with pretty much everything we eat, each person differs. Anyway along with this comes the problem that most CF people can't gain weight either they have no appetite or they eat like mad but the weight just doesn't go on. This can be a big problem when it comes to infections because you need the weight behind you and the energy to fight the infection.
Some lucky people with CF manage to gain the weight, myself being one of these people. It's a really good thing but it comes with it's faults, so here is a little moan from the other side of weight problems with CF. All the weight I put on tends to lay straight on my stomach, making me look somewhat pregnant..I actually feel quite fat at the moment because of it. I have in the past been told by a nurse that I need to loose some weight (she wasn't a CF nurse) and have been asked if I'm pregnant. I weigh 9stone 6, 60 Kg and am 5ft 3. I spoke to my dietitian about 4 months ago about how this was bothering me and she said I could cut my diet down a very little bit. But in my head I have a massive dilemma with that, I can't let myself loose weight, I'm too scared of falling into a pit and not being able to gain again. I have been there before when I was younger. I don't really mind being a bit bigger in the winter but I'm thinking of my Holiday to Spain in June this year, then my wedding in June the following year, I want to feel good looking especially being in bakini's and wedding dress!!!! I know I will never have a flat stomach but flatter would be nice and I don't no how I can achieve this. I'm hoping my exercise regime on the bike will tone me up a bit, it's certainly doing something to my legs. Does anyone have any other idea's, I have been doing sit up's and crunches but have heard if these aren't done right they can just make that worse and who knows if I'm doing them right..It must all be helping my lung function though(i hope). I wonder about trying to get down to 9stone and just keeping up the exercise, but I'm too worried, if I stay at 9stone 6 but manage to tone up I don't mind I just want to sort my PRENANT looking stomach out before I'm ever asked again!!! Until Of course one day in the quite far future when hopefully I can say yes!yes I am.

On the positive the exercise is still going quite well, am doing 5 mins every morning and every night on the bike just before physio and am either walking or doing sit ups etc during days where I'm not too busy or tired. I haven't started the Yoga yet but the DVD's have come so am going to see if Mum wants to come over for a go Fri, If not may just try myself. You may have guessed I still haven't started my job yet! I think it will be next week though:D They called me into the office and asked about my Cystic Fibrosis and whether I will be ok working etc and how I will be with the early starts, so this is good, I now know they no about it and understand.

Our family 'come dine with me' is now into full swing, I started off and I think it went really well, well I enjoyed it. This Sunday it is my youngest sisters turn, 8 year old Ali. Think the menu is fruit cocktail to start, shephards pie for main and fairy cakes and custard for pudding. I look forward to it, though I dont like cake or custard but the rules are you have to try it, so of course I will. And I love shephards pie!!!

Wow massive post, just had to moan about my podgy stomach! Poor Marc has had me moaning all week and he says all the right things, like he loves me how I am and I dont look bad at all and all the nice stuff. I just see myself in the mirror, hmm....

Exercise..

I find the motivation to exercise so hard, and I never no what exercise is best to do. I had been doing sit ups, crunches and ''push ups''. Which did raise my Lung function but it's very tedious and boring and doesn't get my heart actually racing or me out of breath. So now my lucky Grandparents have jetted off to Australia and I have borrowed my Nan's exercise bike for the two months. (My nan has bad parkinsons, makes me very sad but she does better if she goes on her bike in the morning. Anyway so now I am attempting to go on the bike at least x3 a week... I thought I'd start off by doing 15 - 20 mins, easy, haha How wrong was I? I did 5 minutes last night and my heart felt like it was going to pound out my body and I couldn't stop coughing and breathing was a mission, so disapointed in myself. I had kept it at a steady ish pace of about speed 13 (If that means anything to anyone). However I am very proud of myself for today as I went on the bike as soon as I got up for work this morning at 6.30 am!I still only did 5 mins and had an even slower steady pace of speed 11. But I'm going to aim to do at least x 3 a week and get my heart racing each time. One day I may be doing 30 mins. Hope this helps my lung function. My Mum and I are also planning on attempting yoga, our plan is to buy a DVD and once a week on my day off we will do it together... hope we can do it and stick to it. I might even look at buying the DVD in a minute as I'm at my parents at the moment.

As a follow on from my last blog, I failed my M.O.T grr, luckily my gorgeous fiance is already fixing it! And I should be starting my new job next week full time. They have my CRB and P45 now and I have more training next week so they usually ask you to start that week. I hope. Been getting so bored. However if I don't have any work this week I have 3 cool things planned. My partners best friend is over for tea tomorrow night. Thurs my best friend and her partner are over for dinner. Friday my family, Marc and I are starting our family 'come dine with me'...This is going to be so exciting, it's half for fun and half to encourage my little 8 year old sister who also has Cystic Fibrosis to eat more and eat proper meals..not just chicken dippers or cheese! I'm starting and my menu is: Mini chicken satays with peanut sauce, Honey and Orange glazed chicken with baked potato and side salad and chocolate mousse with a hint of brandy. Oh man, wish me luck.

Right I'm off to buy a yoga DVD, drink some tea, do some physio and then head back to my home.

How Silly..

I can't believe what I have managed to do... I booked my holiday for Spain for the 13th - 27th June..lovely. Just found out 2 days after I booked it, that one of my close friends weddings is the 25th...tried to change it by a few days..they want £200 to do that! I don't have any money, scraped to pay for the flight. The original flight was only £245 so it's paying for a whole flight again..gutted. now I really don't know what to do.

On a plus side I just sorted my car insurance and managed to save rather a lot by putting Marc and me on to the same insurer, they were really helpful and even though Marc doesn't need to renew his insurance till November it still saved me money and he will be insured with them from November for cheaper. So that's one thing off my mind. My car is now at it's M.O.T (Which every year since I have had my car it has failed, so here's hoping....)

I am really struggling to get into any exercise at the moment..it's miserable outside and I can't be bothered..which is the wrong attitude I know. However as of Friday night I'm borrowing my Nan's exercise bike which I am going to aim to get on at least x3 a week. See how long that last's especially when I start work. I haven't done a lung function in ages...I hope it's ok. I put myself on antibiotics which I finished Sunday and I do feel pretty well I think. I haven't been to my proper hospital in ages, like October was the last (before America) and am not going till March..my own fault because I was too busy sorting myself out with a job but now I feel I should see them, all I want is a lung function test. I might get my sister's nurse to pop in with her lung function machine this week as my name is still on that, just make sure it is still reasonable.

Too many worries...

I seem to have so much on my mind at the moment, I can and have talked to my boyfriend about it all but not so in to depth, I know it just upsets him, and me.

We have set ourselves two massive things to save up for in the next 5 years...a house and marriage. Two things we really want!! I mean I have just got a new job, and the pay is pretty good (compared to what I have been on of recent) but I'm worried what if I get ill, what if 40 hours is too much and I can't cope... I might be absolutely fine, I plan on just making my life and my boyfriends work routine around my new work. So if I'm doing a late, get up a bit later, stay up late that night to fit all my physio and nebs in, then be in a routine for late's... but as soon as it changes to early I will have to re-routine myself around that so early bed and get up really early to do nebs and physio...yes easier planned and said than probably actually done, but we'll see. The new job is absolutely amazing and I can't wait to get properly into it! The staff seem very supportive so I am sure it will be absolutely fine.

Then on the CF site there is a lot of talk about having children and the morals of it all, and the safety on our health. I find it really hard to read these posts, because having a baby has never been a question to me, and still it's what I want. And I know its what my partner wants, he's such a family person and it would kill both of us if we couldn't have a baby. I worry what if I just can't get pregnant anyway? What if pregnancy makes me so ill that it harms the baby? If I have the baby then I know once that babies born IT WILL live a happy life, even when/if I loose my life early on. My family are amazing and my mum would do anything for that baby and my bf's family would look after baby, we have close parents, brothers and sisters who would all show this baby enough love...so the morals of bringing the baby into my family I have no problem with. I would just love to be there... and there is nothing to say that I wont, but as I have noticed a lot more recently...Cystic Fibrosis is unpredictable. But there's no saying whether I will just get ill anyway, even if we don't have a baby and then at least I'd be leaving Marc with like a part of me..and they'd have each other...with all the nasty cancer's etc in the world, many kids loose a parent early on, I've witnessed it with a close friend, it was a dreadful time, but the dad looks after the kids now, the mums not forgotten but they live a happy life as it is. Just writing it down here, now, I feel a release of the worry I have had. It all sounds better in my head now. And I know the path I will take so long as I maintain a lung function for when the time is right to have a baby. It will be the right thing for me. At the moment however we can't afford it, so im hoping I can stay well for these next 5 years so we can then start trying. Will probably start seeing docs about it in about 3 years as when you have CF having a baby is a much longer process than normal. Sorry if any of the above has upset/offended any fellow CF'ers it's a very tough subject for all cf'ers.

I think that is all that's been playing on my mind actually, now I have written it down, it seems so silly that it has been getting to me for days. Only time will tell, and we can't plan some of these things in life....Worrying about whether I will handle my job is not going to help, all I can do is do it and see...If I can't I will just have to cut my hours down. But I'm sure I will be fine:D

First January Post

I don't really have much to say...however feel I should say something for the new year....even though we're like 10 days into it now!

Well I had a brilliant end to 2011, felt like we had like 5 Christmas's with various people, doing different things. Spent Christmas day with my family, Boxing day with Marc's, day after at my Nan and Granddad's and so on. Also managed to see 3 of my best friends who were home from Uni! Marc and I got absolutely spoilt and I hope we spoilt everyone else enough, we did get carried away with the Christmas shopping and everyone loved what we got.

New years eve we managed to spend with both of ours immediate family which was lovely. And Just what I wanted.

2010 Was actually a brilliant year for us, my health remained consistently okay, we went to America, Marc and I got engaged, we moved into a beautiful house.... what more can you ask for in a year.

I have good feelings about 2011, got a new job which I start soon - Is going to be brilliant, though I am a little worried about how I am going to cope working 40 hours a week!! We will just have to see. We also have wedding planning to do and look forward to...for June 2012 and we are looking at booking a 2 week break in Spain for this June..we will be staying at my grandparents and probably spend most of it being stupid in the pool - we had a great time last time! I might book that today - Marc and I are paying for it for each others Birthday presents as we need to save save save as much money as we want to get a mortgage and we want to pay for our wedding!

Anyway I better go...off to my nan's for lunch!!