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.