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!!

1 week in...

Had bit of a nightmare with needles poppin out my port and causing me pain. Though I was so stressed I would get ill rather than better but somehow my Lung function is up to 2.1 (69%) So something must be going right. Me x

Lung Function ..

Its down to 1.88 - 1.91 ish, thats what I think it said anyway, i forgot to ask.
So it has gone down quite a bit.
Want to work really hard to get it back up, but can't do sit ups etc cos my port needle will pop out, it''s already come out once and it reli hurts when it does it. Will go for a nice long walk with mum later that should help! and just do some good physio's.
Managed to have my Tobi bloods taken from my port...so chuffed. bet i'l need them out my arm Monday as am not that lucky!
Hope everyone is well
x