In a blink of the eye

I have`nt blogged about anything for some time now, allot has happened  since I last blogged but I was not sure how to write down everything and yet still keep my family protected as they are not bloggers themselves.
Wow I have only just blogged down my first sentence and reading it back to myself it sounds jumbled and a what is she talking about, but I am going to try and attempt to make some sense.

Starting back as far as September I joined a local choir something I have been wanting to do for a long time, I discovered the choir on the Internetr whilst I was in hospital for iv`s. I`v been going to the Gospel Choir since September once a week, it is fantastic the people are really lovely and welcoming. The music we sing is so uplifting and makes you feel good about everything for a while. I am also hopeing the singing will do my lungs some good and open up the airways.

I have been trying to get some  voluntary work in my local town area since May this year. I was thinking two mornings a week as a whole day would be exhausting. Aalthough I can`t offer much I would love to do something to give myself a feeling of self worth and a purpose in life that is not just existing with all the medical stuff. So far I have try ed four places with no luck, the first place a museum did take on volunteers but had 25 applicants for the one position, I am so surprised at how difficult it has been but it has made me even more determined to carry on looking.

My Dad had to go into hospital this September for heart surgery, he was really ill after surgery but is now recovering well he has been told when he fully recovers he will feel a new man, but not to expect to be able to run for miles if he could`ent to if before surgery.
With Dad still recovering Mum was also taken into hospital two weeks ago and needed surgery, it was terrifying seeing her in the ICUnit. I don`t want to go into detail but Mum is slowly recovering and I am so thankfull for all the staff that has and is still treating my Mum, without their care things would be so very different.

Now up to date the last two months has been very hard for all the family, I have had a really rattly chest on and off the last month but so hopeing oral antibiotic will keep things at bay although I no iv`s are really needed.

That boat has sailed

I am in hospital again after just finishing two weeks of iv`s as lung function was down and generally feeling worse than usual. Today was my ninth day of  iv`s only five days left then I can get back to some sort of normality what ever that is. When ever I am in hospital all Cf patients get their own room because of the risk of cross infection and like myself at times we all go through the emotions of boredom, loneliness, frustration and a feeling of being detached from the outside world. When I first started my blog I felt very much a closed book person in reality I am still very much, there is something about writing a blog on the computer that unwraps my feelings, this could be because in some ways I still feel what I am blogging about  is still personal to me and I  don`t have to confront anybody one to one. Today was a struggle it was one of those days when you looked at the time and only ten minutes had past. The dietician came in to see me and talked about the usual increasing my BMI and how a good weight helps in lung function and life in general for CF people, now with all the positive of a increased weight and 0 for a lower BMI you would have taught I would eat as many calories in a day as possible. I have always been one of those people that would be 100% compliant with treatment to keep as healthy as I can but adding on weight I struggle with because the thought of even putting on a few pounds scares me and when it dose go on I hate myself. When left in my room today I had a feeling that can only be described as over whelmed, I thought about one question in particular that had been brought up during the day by the dietician, why do I feel like this? I always thought I knew the reason but now I am not sure and if I can`t understand myself how can I even expect others to, I really wish I could wake up one morning and feel yes weight is good.
During the week I had a phone call from my to be university lecturer for Ocupational Therapy this September and the effects of that call have really hit me now. Last year I was meant to start the course but had been in hospital for 6 weeks over the summer and during the start of term so had my course deferred for this year hopeing and praying my health would pick up. It if anything each day is a task in itself but although I had to face up to the reality uni was out I just could not write the email because then that was really my hope gone. Well she rang this week to ask if I was still starting in the new term I had to openly admit I would not be starting, I was offered  another defer for next year but had to explain to her my chance had gone. That is that the boat has finally sailed as they say I am sure when it has really sunk in the flood gates will open.
Hopeing my next blog will be of happy times.

Memories to treasure x

This weekend I went away with my best friend and her 3 sisters to Bath I truly had an amazing time. I went away unwell knowing that when I arrived home I would be repacking to go back into hospital, I felt so well whilst on IV`s but went straight down hill soon after finishing the course, I often wounder what I am doing wrong, to be out of hospital for two weeks than back in again is insane!
We left for Bath via train on the Friday morning so we would get there early and have some time to find are apartment in daylight.  The train journey was so very quick and much better than travelling by car, we had three train changes one being the London underground now that is always an experience. To my surprise we arrived in Bath by 1:30 as I thought the journey would be much longer. With the help of the good iPhone we followed the directions to are apartment, what a walk it was thought it was all up hill and I was not the only one struggling, by the time we arrived we were all very much exhausted. As we entered and looked around the apartment we were all lost for words it was stunning and decorated minimal but very modern, usually the pictures you see of where you will be staying are much better than the actual thing but this was the complete opposite the pictures did not do the place enough justice.
We stayed in an relaxed that evening as we were all very tired but Saturday we were up and out early to see the beautiful sights of Bath. I honestly have never been to a city so lovely the pale cream stone they use for all there buildings is so nice, the city is clean and you can see the people that live there take pride in where they live. We spent Saturday shopping and getting to know the place, it sounds crazy to come to a beautiful city and go shopping but they truly have amazing shops nothing like I have been to before, I brought a few Christmas prezzies from the Disney store I love this place and I like to get organised with Christmas early because I never no if I am going to be in hospital over November / December when I would have usually been sorting presents out.  That evening we went back to the apartment by bus this time had some dinner then back out for a drink in one of the local pubs to end a lovely day. Sunday we lad a lay in but when we aventually went out we visited the Roman Baths, you can`t go to Bath and not see this atraction as it is what makes Bath so beautiful and it is right in the centre of Bath`s city. We then went to the fashion museum it had the original costumes that actressess had worn in films, it had Kiera Knightleys dress from the Dutchess I could not get over how tiny her waist was for this dress. Orlando Blooms costume from the Pirates of the caribean and many more stars outfits. The museum also showed how fashion had changed over the years and I got to try a corset on. Monday was are day for coming home so we spent a few hours walking around Bath and along the river before getting the train home, we arrived back at 9:30 we were all so exhausted but what good memories we all have and although I never told the girls this they are just like sisters to me.
Tuesday morning I had a call from my CF nurse to say there was a bed for me so here I am back in hospital, unpacked and repacked fresh cloths in under half an hour that has to be a record for me. This weekend had given me treasured memories.

Birthday suprises

This Monday 1st August was my 27th birthday I have had the best birthday in a long time. It was lovely and relaxed no planning for a party which these days I find exhausting, although I very much love when the whole family get together. I cam home on IV`S and did not finish until Tuesday 2nd but on the Sunday evening whilst having one of my IV drips Dad came in the sitting room with a early birthday surprise, he had brought a birthday cake and had happy birthday candles alight on the cake, that alone would have been enough of a birthday for me because it was so thought full and so unexpected. On Monday mum, dad, family friends and I went out for a curry in the evening yum it was so nice. Tuesday mum, dad and I went to see the second half of Harry potter at the cinema, although not very impressed by the last two films I thought this final film was just fantastic and had a perfect ending. I made some home made bread that evening from a present by Dad a bread machine, It turned out really well although the bottom of the loaf looked really wrinkly and odd but it tasted good. To end a perfect two days I ended felling really unwell with a temperature and to be perfectly honest felt since my IV`s like I had taken one step forward and two steps back, life has to go on feeling unwell or not. As a birthday present from mum we are going to have a pedicure and manicure in the week, although a beautician myself I have never actually had anyone since my training do either of these on me, althought I have done plenty on others but love doing so and the reward I get is to see how happy it makes people feel after having nice nails etc.

Rossetts all the way

Today started off with me having to make the effort to get ready and put my makeup on to hide the fact I was not feeling great especially having had temperatures in the night. I was supposed to be going out with my best friend for some retail therapy but she called to cancel at the last minute, she herself was not feeling all that fab. I decided having made the effort to get ready in nice cloths and a full face or makeup to go out myself to the nearest city centre, however whilst waiting for the bus I saw there was a dog show going on and saw family members selling jewelery there to. I found out it was a dog show for the local community run by the council for anyone to put their dog in any of the 9 categories. I rushed home as fast as humanly possible for me and got Opal she had had a bath the previous day so only needed a quick tidy. I entered her into 2 categories 1) The best condition, she came first for this and got a red rosette and a silver plate, I was so near to tears with happiness. 2) The best looking bitch, she came third for this and got a yellow rosette wow I was star struck that my little girl was behaving and doing so well with all these dogs around her many 4 times as big as her. Then at the end all dogs that received a red 1st rosette had to go back to the arena so about 30 in total, so up Opal and I trot their was 3 prizes for the best dog in show Opal and I came 3rd and received a cup, beautiful green rosette dog biscuits and a photo that will be in the paper. I can not remember a day that has been as good as this I am only now coming of cloud 9.
It was esppecailly nice having my family around to support me and made a good unexpected day out.
To top things of my Dad had a barbecue going when I arrived home bliss.

Home sweet home

This has to be my shortest stay in hospital for many years 10 days, I will finish my iv`s at home so another 4 days left. After much thought and consideration I decided I could manage 4 day at home and hopefully not get exhausted like I usually do as the iv`s I am on at the moment are only twice a day. My birthday is on Monday 1st August  so I will now be home for that, at first I did not really want to celebrate becoming a year older 27 in fact because it just means I am near 30 and that scares me a bit considering my lung function is bad bad bad 0.9 at best. Not to say when I hit the 30 mark things will only get worse but as a child I thought I would beat the odds and live a very long life, this all sound like I am a negative person but that is not the case I try my best to be optimistic about things. I am so pleased to be going home because I have not seen mum and dad and my gorgeous chihuahua Opal, I have really missed being able to cuddle her anytime in the day. I am very sleepy at the moment because of the extra anti epilepsy tablets I am on during my iv`s, my epilepsy always gets worse when on iv`s why I don`t know? Saturday I am going out with my best friend not sure where yet many ideas have been thrown about but none decided on, any where is great for me just to have a "normal" day is always good.

Invisible me

I am in hospital and as you know there is alot of time for thinking things over and making plans, alot of the time my ideas don`t actually happen but at the time it seems great and keeps me going through out my hospital admission, for instance going to a music festival with friends.
The last few days I have really noticed a big difference in the reactions from people from my mega hair style change, going from long sitting length hair to a short pixie style.
I had always thought that my long hair was my identity and that is what people new me as rather than the person I am, Since the new hair style people have started to recognise me and comment on how I look like a young woman now and not a child. In actual fact looking back I felt invisible like the last one to be picked for a team, I guess I felt and new this back then but it`s not until change happens you actually realise! All is good and I feel good for once and a grown up at last, wow who would have thought hair styles would make a big impact on someones life.

Brain over load

Well I`m back in hospital for a cocktail of iv`s so two weeks of  nausea. Lung function and exercise tolerance down but on a positive note  I can say I don`t feel all that bad considering the year I have had.
When you feel as though each day is a challenge and feel ill  90% of the time I think you adapt and it then becomes difficult to judge when you need iv`s.  I have only been in 4 days but all ready I can feel the difference apart from the nausea.
Something has been really puzzling me at the moment, my lung function is low which I except but what I can`t get my head around is after all these years with mostly the same lung function, I have managed to get out and about but now I need oxygen when walking even the slightest distance. WHY when my lung function is more or less the same??? I have always struggled walking up a flight of stairs or walking my dog but not to this extent, I hate it when I am so out of breath and have began to slightly panic.
I am trying to use the oxygen when walking the dog etc but am finding it difficult to be out with it even though it really helps. I have given it much thought as to why the obvious one is people seeing me but more so family which is silly I don`t want to be seen as the helpless one I guess, I am a young woman yet can`t do the thing in life I have so very much wanted, not going to university has to be the most upsetting and  going on holiday with friend abroad would be nice. The biggest reason I fear if I start using oxygen is this how it is going to be from now on ? I am trying to fight back but am I just fighting a losing battle to go without? I see the oxygen as this is how its going to be from now on and it scares me to think of it like this, my lung function is very very unlikely to dramatically improve I don`t have a back up plan that option is out for me.
I am finding putting thought and feeling in writing helps .
On a happier note my nephew got married last week and his wife is so nice. The party was in a hall with puddings family made and my brother in law did a barbecue everyone had a good time.

Sponsored hair cut

I have been known as the girl with the long hair for many years now, yes forget my name people outside my family refer to me as you know the girl with the long hair!
I have been trying to think of different ways to help raise money for the Cystic Fibrosis unit I attend, you would think this would be easy I have lots of ideas but putting them into actual practice has not been so straight forward.  This January I decided one way of raising money could be to have my long (sitting lengh) hair cut of into a very short pixie style cut, a full head shave would just be toooo much. So I had decide after the summer holiday would be the ideal time and give me the time needed to start fund raising. By some bizzar coincidence in March of this year my hair started falling out and after a month having passed by I had half the thick ness of hair left, I put this down to the high dosage of steroids I had after friends having had the same thing happen to them after steroids. In may this year I got up one morning and decided enough was enough and didn`t want to wait any longer for more hair just to fall out. On the 19th of May I went from having sitting length hair to my hair being no longer than 3 inches long, I thought I would have some regrets but I honestly think it was the best thing I have done in a long while and not a day has passed since where I miss my long locks, I did keep the long plate of hair as a reminder thou. Wednesday 6th July I handed a cheque for £250- to the CF unit :) smiles all round. Thinking cap on for what to do next, my brother has mentioned a sky dive but I might have to watch him fall thousands of feet from a plane not my idea of fun, I would probably pass out with fear.

Day`s like these

Today was clinic day in London, I went with a packed suite case just in case I needed to stay in for  iv`s. There have been a few times where I have been caught out needing to go in hospital for iv`s straight from clinic and hay presto I have no Case, if this happens you get given some very fashionable green bottoms and top or a pink nightie that has a big gape in the back oh sooo glam! But here I am at home writing my blog so hopefully another few weeks before I need to go in hospital, for this I must keep up with all my meds and nebulisers to keep my chest as good as possible.
I`v had a gastrostomy / button for 3.1/2 years now but as of tonight no more it will be. I went to clinic nervously because I told my dietician I wanted it out, although not at the ideal weight recommended I just could not do the feeds for reasons I have been trying to get my head around for the last 4 years. The button itself did not bother me except it leaked all the time just bad luck on that part, it was really hard confronting the truth because my dietician is so good and dose everything she can to help and I feel so awful. I just hope I can keep this weight up with out letting it slip or another gastrostomy will be recommended again, so altogether mix feelings.

Happy Holiday`s

I can`t find the right words to describe how isolated and frustrated I have been feeling of lately. When I think about what I could be doing with my life if only my lung function was better but not that alone if only I could  just get through a day feeling well. I daily think am I trying hard enough? Should I be pushing myself more am I being lazy??  It would not be as hard if I new things would get easier but the fact of the matter is I don`t have a cold I have CF.
Last week I went on holiday to the Isle of Wight with Mum and Dad oh and not forgetting Opal. It was a long awaited holiday having had to cancel two weekend holidays last year because I was ill in hospital. I have had many holidays growing up with great memories but this holiday was sooo good. Maybe it was good because for one whole week in a very long time I was able to leave and forget every thing behind me, no hospital appointments to worry about, collecting medication from Gp`s surgeries etc everything could be put on hold. We visited many lovely places and in our own time and pace what could be better, One day we went to the Needles and went on the chair lift over and down the side of the cliff wow that was scary especially if like me you are terrified of heights, but I got a smashing picture of mum and me on the chair lift one for the album ha.
Home again and back to normal life time to plan for next years holiday I think.

Me, Myself and I

Well here goes, a little about me I am 26 but near 27 wow that makes me feel old. I have a large family and without them I would not be the person I am today and have a lot to be thankful for x
I am a qualified beauty therapist but unfortunately never got the chance to work in a salon or travel the world by sea`s on a cruse liner/ship. WHY? I have Cystic Fibrosis and Epilepsy, although CF dosen`t stop you achieving your goals in life it can/dose alter the path in which you chose to go down.
I have a beautiful Chihuahua called Opal, she is only 7 months but each day the bond between us is stronger, she gets away with allot who wouldn`t with her big eyes and two large ears looking up at you? I only have to look at her and she cracks a smile on my face, turning what seamed a awful day into a what am I worrying about day.
Cystic Fibrosis is a genetic condition that affects the lungs and pancreas.

Open Book!

I have never kept a diary or journal before the reason for this I find it difficult to write down my thoughts and feelings. I am often described as a closed book, I keep my emotions looked away. I have read many blogs and have decided it`s time for a change, no more hiding or running away from myself but to get writing!