It's been three years and I'm back!

where to start so much has happened in life generally and health.
Think I will start with life itself, Opal my faithful companion will be five this October, can't quite believe where the time has gone, she means so much to me and is a real mummy's girl.
Two and half years ago I meet my amazing boyfriend he has been there for me through thick and thin.
I moved into my own home close to two years ago, only a stone throw away from my mum and dads and it is perfect could not have designed a better place myself to suite my needs.
I still attend choir but not half as often as I would like :( have to say CF is fighting me a lot atm but I am fighting back doubly as hard.
Now my health has deteriorated quite a lot since my last blog title, I can't get out and about like I use to cause of feeling I'll most of the time and tiredness creeps in during the day like a car running on empty lol
A good thing is I don't rely on my oxygen as much but then that is partly cause I use my wheelchair most of the time when out, it is a case of needing to except the wheelchair as a second limb if wants to go out and about with my partner and family.
I have had to except I am in the End Stage of CF but that won't stop me pushing myself to the max and enjoy life with loved ones cause at the end of the day that is what is important to me not how long we have but how we spend are time.

Amazzzing

This week has been an incredible week one with memories never to forget.

For over a year now me and my friend have been saying we would like to see Westlife after admitting to each other that we really liked them! So after hearing early this year that Westlife had decided enough was enough and they were doing a farewell tour  to end 14 years of fun times as a group, sad times indeed the though of no more Westlife. 
We we booked tickets to go see them at the o2 arena 7th June and this happens to be there last day they would ever be singing as Westlife at the arena in London. My seizure control for my Epilepsy had been really bad the week before and I couldn't work out why, nothing had changed in my meds and I haven't had anything to stress about which is often a trigger for increased seizures. We are now five days since going to see Westlife and my seizures have reduced dramatically so the only thing I can think was I was just so excited to go and see them strange because I thought I was calm and in control obviously not hehe.

There was meant to be four of us going to see Westlife but my best friend couldn't go at the last minute, the other two girls going I had never meet and were friends of my friend. I couldn't believe what I was hearing we had planned this day for so long and I so wanted to share the experience with my friend, I had the Colly wobble and was in two minds as to weather I should still go, I was already nervous about getting there by train and the underground and then going with two people I had never meet before made me really nervous especially as they wouldn't no me and might freak out if I took my portable oxygen to help with the walking between train etc. I braved up and decided I wasn't going to let my nervousness get the better of me, so of I went to the station to meet Caroline and Tina  and I have to say when I saw them it was as if we had always known each other they were so lovely and we had allot in common, conversation just flowed and flowed. The walk from the station was short and sweet and I wouldn't have second thought about going by train to the o2 again. We arrive really early so went for a lovely meal at Armadillos sweetcorn fritters to start, chicken burger, syrup pancakes oh and a sneaky cocktail to start the evening, we must have been in the restaurant for 2+ hours surprisingly we were not asked to leave even though they had a massive que of people waiting to dine.

Time soon came around for us to get in que, we had great seats that were facing the stage and the shear size of the arena full of Westlife fans was breath taking. I have to admit I have always liked Westlife but many like myself have always kept this to themselves hehe but after seeing them live on stage I am proud to say I am a Westlife fan!  I had a awesome evening one which I won't be forgetting and made two friends for life.

Clarity

The sun has been well and truly out and shining this week, who doesn't like it when they can get there summer frocks out and put the winter jumpers away, lets just hope this weather continues so we can actually say yes I remember the summer of 2012 rather than ow yeah you remember that week of sun and heat we had!!
I have always had pale skin and most of the time have that pasty look about me oh so not good, I have often questioned the fact that I never get a beautiful tan like many girls instead I stay pasty looking or burn like a lobster eek. However I now have the answer to why I can never get a beautiful tan it`s simple I just don't have the patience! This week My friend and I took a picnic and blanket and decided to take advantage of the sun, we found a great sun bathing place with beautiful green grass beneath are feet and amazing views of the seas. Out came the sun cream and I actually braved it and put on my bikini top and some shorts this is a rarity for me I`m not one for exposing myself and lying in the sun. We had are picnic and some well thanked for frozen drinks that had turned to slush in the heat, then began are journey to getting that longed for tan, after only half an hour lying in the heat and I have to say continually turning over, sitting up then lying back down I admitted defeat and couldn't take the heat any longer and needed shade. So this is why I am always pasty looking I`m just not one for lying in the sun I haven't the patience but dame people make it look so easy lying bathing themselves, who would have thought it was actually really hard!!
I have found this week really draining with the heat not nice at all like someone has left me unplugged (if I were to be plugged in :) and my battery is just draining away and because of this my appetite seems to be no stop I`m dreading standing on the scales and seeing what damage I have done hehe.

I had choir this week and had some much needed catching up to do as I had missed the last four week with hospital admission and previous chest pains etc. It was are last choir session before we broke up for the half term and had a social evening after practise I made some cup cakes and put raspberry icing on them but I rather think they were a bit sickly in taste so wont be experimenting that one again.

Since my last lot of iv`s two weeks ago I have had a small lung bleed but despite this my chest feels fairly good and I have been pushing my lazy self to walk the dog even if it is only for a few minutes in the hope I can extend the distance I walk, well if I don't try my fitness level most surly wont improve so I haven't anything to lose but try.
On my way back from my very short walk with Opal I meet a old school friend who I haven't talked to in about 8 years even thou we only live 5 min from each other, it`s funny how the world seems so small some times i.e I was on holiday a few years back to Centre Parc and my neighbour happened to be at the same place at the same time and yet this friend I meet today lives so near but for the past 8 years we haven't encountered each other until today.
We talked for a while asking each other more or less the same question, she said how she went to uni but only went for a term before having to leave because her Diabetes was getting to much for her and the stress of full time work was making her very unwell. She now works a few hours here and there rather than set hours a week and is enjoying life working on her own terms to maintain her health, I could tell by the way she was talking about her job and house etc that she was in a really happy place. When I got home it made me think that's is just what I want to feel happy and at Peace with myself to feel fulfilment with my life, how I go about that I`m no entirely sure yet maybe I need to stop worrying what the out side world think of me first. People who don't no me I feel look at me and see this young woman looking well with a mask of makeup on and question why I am not working full time. We live in a society that is so judgmental upon first appearance and I no this is only nature but it doesn't make it any easier to except. If anything today meeting an old school friend has taught me to be myself but most of all be happy and stop looking for happiness that cant be found because I already hold the key to my own happiness.

Word Blindness

I have had nothing worthy to blog about of late, you could say I have been sort of stuck in a haze! Sitting writing this post now I am finding it difficult to find the words to say how I have been feeling for some time now, haha how mellow dramatic dose that sentence sound? Believe me I am a optimistic person at heart and always try and see the good in everything even when it`s really hard to see the light at the end of the tunnel!
After many months of looking for voluntary work and failed many times I am pleased to say I am now back voluntary working one morning a week, health permitting :) I am back with the same lovely people offering manicures in the day centre I use to volunteer for before my health took a big dip. I love working with the older generation and hearing there tales and it is lovely to see the smiles of what a bit of nail varnish can do. I have been feeling out of sorts for a while now especially since my chance to study OT at university was no longer a possibility and I had to face facts I just was not well enough any more. It really upsets me and I try my best not to think to much about ambitions I had once, as long as I had ambitions in my life i.e university then a job etc I felt in control and really happy because I could be who ever I chose to be in life. Right now I would be over the moon to be able to have the opportunity to work in a little shop etc but that's just not going to happen and this is what I am finding the hardest thing to come to terms with, the fact that my health is not going to get any better and this is only made more real when I need to use my portable oxygen when out.
It has been well over a year since I started using portable oxygen and it hasn't been easy at times you no with the obvious embarrassment and largely because of what the oxygen represented to me. I felt very vulnerable when I started the oxygen because to me it meant my health was on a decline and having to realise on a tank of oxygen when going out is not a great feeling. It has taken me a very long time but I have realised I can walk a little further and reduce my coughing fits if I use my oxygen!
I have also made the decision to move out of the family home one which I did not make lightly, I am the last one to fly the nest and if I am honest I am sure I should be far more excited about the prospect than I am but in actual fact it is slightly over whelming. I keep reminding myself it is the "normal" thing to do.
I started a course of iv's two weeks ago the plan being I started at the hospital and finished the course at home but things didn't go to plan, when my port a cath was accessed and flushed with saline I had allot of pain where the tube goes over my collar bone and swelling, I had a scan and dye was put through the port line and it showed a rupture in the tubing where the saline solution was leaking out into the tissues rather than the vein.  I ended up having to stay in for my iv`s until I could have a pic line hehe never a dull moment. I have only had this port a cath in just over a year now so I am not very happy as this one has to come out and another put back in some time in the year.

I found my pot of gold

I`m back!

I have not had much to blog about of late only the normal CF life side of things and I don't really like to dwell to much on this side of my life even if it is a huge part of me.
Health wise I would`nt say I am doing fab more like ticking along. December was my last admission for IV`s I was in over the Christmas week and new year but did come home for Christmas eve, day and boxing day before finishing my IV`s back in hospital so not all bad worked out quite well in the end.
What`s been real disappointing is that 7 months ago my lung function decreased further and in all my effort to try and get it back to 0.8 it just not budging I am so hoping this is a temporally blip but I was so hoping to have seen a change by now.

Last September I joined a choir we sing a bit of everything from Gospel, Rock, and Religious songs, we have been preparing for a concert which was this Saturday so the last month my lungs have been having a real work out :) I love singing as part of a choir so much it allows me the opportunity to be like everyone else my health sort of takes a backseat when singing. I feels so blessed that my low lung function hasn't stoped me singing, if anything it has taught me to have breathing control.
I had been relay looking forward to the concert and this Saturday the day had arrived and wow did I have butterflies, the concert was held in a local church which seated 250 people and all tickets sold out. The evening was amazing and one person from the audience said it was frekin electric! I had such a brilliant time and felt like I had found the end of the rainbow.
I am now looking forward to starting rehearsals again working towards a summer concert.

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.