With Christmas just around the corner, I thought I’d look back on a year of transition. A lot has happened in twelve months, and the blog post
I wrote back in December of last year indicates what a busy year it has been for me.
In July I waved goodbye to the Royal Manchester Children’s Hospital and bid farewell to a team of quite brilliant professionals that have witnessed my progress from birth right through to adulthood and all the stresses and strains that occurred in between. I’m now under the care of staff at the Adult Unit at Wythenshawe Hospital, who are equally as exceptional in the level of care of they provide.
Whilst making the transition to the Adult Unit, I was in the final stages of completing my A-Levels, which I would later find out, whilst on a train somewhere between the Swiss Alps and Paris Gare du Nord International station, that I had been offered a place at University to study Journalism.
Despite not begin totally convinced by the prospect of University (I was rather hoping for ‘spark of genius’ moment that would be make an overnight millionaire), I accepted an offer from the University of Salford to take a degree in Journalism, based full-time at MediaCityUK – that was the primary reason for committing myself to another three years in education, I couldn’t have allowed myself to pass up the opportunity to study in an environment where the neighbours consist of the BBC and ITV, with my beloved Manchester United just across the water.
It's a long day when your a patient!
Prior to beginning at University, and fresh from a summer holiday in Switzerland and Italy, I was informed that I would need to be admitted to the Adult Unit at Wythenshawe Hospital having recently transferred. The admission would allow the CF team to assess my treatment, general wellbeing and allow me to become more accustomed to the process of an admission. Having not been admitted to hospital for the best part of a decade, I was apprehensive and the thought of a two-week stay was hard to handle.
Not really knowing what to expect, I was admitted less than three weeks before I was due to commence at University and I spent fourteen days receiving treatment and undergoing tests. The admission allowed me to regain my strength and provided me a much needed boost, having been unwell for a few days prior to the planned admittance. With University looming, the ward stay offered me the chance to ensure that I was heading to University feeling healthy.
Whilst I can’t claim to have enjoyed my time on the ward (nobody likes hospitals!), it certainly made me realise how fortunate I was to have a CF unit just minutes from my home, which is recognised as one of the best facilities pertaining to Cystic Fibrosis in the country. The staff are fantastic and although each day was fairly monotonous, I did feel as if I made real progress and after the first few days I had settled and in between physiotherapy, exercising, IV’s, glucose tests and regular observations I managed to watch plenty of daytime television and pack in the calories!
So after being discharged after a two-week stay I had just a few days before I was due to begin life at University. With a mixture of excitement and trepidation I started University in mid September and studying commenced in October. I’ve enjoyed my first few months at University and studying at MediaCityUK is a pleasure, it doesn’t feel like an academic environment and with Costa Coffee in close proximity, I’m well prepared for an early morning lecture, although thankfully my timetable has been kind to me, with most of my classes scheduled in the afternoon.
With life at University ticking along nicely, Cystic Fibrosis decided to let me know that it’s still around and is always willing to unsettle my current contentment, in a way that only CF can. Admittedly I can’t entirely blame a sudden exacerbation of my illness on CF itself. Knowing that managing daily treatment and attending University would required strong self-discipline, I had anticipated being able to balance such a task. Sadly Cystic Fibrosis kicked into action and how!
Having missed only a couple of classes since starting University, due to clinic appointments, I wasn’t prepared to suddenly have my precise day to day routine thrown in to disarray by a sudden health scare.
Having returned home from University one evening feeling as if my body was shutting itself down (tiredness, aching limbs, headache… you know, the usual infection indicators, although without a productive cough, that was a bonus!), I retreated to my bed in the hope that a good rest and a couple of paracetomol would do the trick. Sadly, after a miserable 48 hours and with shoulder pain that I likened to having broken my collarbone (its happened to me twice!), I took the decision to be honest with myself and walked through the doors at A&E.
After spending all evening in resus being monitored, I was hoping I’d be allowed home with a course of antibiotics. Optimistic. I was advised that the best course of action would to be admitted and to start a course of antibiotics.
Not the news I wanted to hear having settled well at University. I made a somewhat hollow plea to try oral antibiotics but rationality won over and I eventually spent nine days in hospital, during which time I worried mostly about the classes I was missing, assignments I was falling behind on and what fellow students would think of my sudden vanishing act.
The second admittance was however much easier and knowing that treatment was needed I gritted my teeth and with each passing day I made progress towards a near full recovery.
Being admitted did knock me back slightly, but on my return to University I was adamant that I would not conceal the fact that I had been in hospital and so I was open about why I was absent. I felt a sense of relief having told people and it has certainly made life easier for me knowing that people understand my situation.
Having deferred a couple of assignments due to my hospital admission I have spent the last couple of weeks catching up and making sure I am prepared for the upcoming semester in the new year.
I’m now looking forward to a Christmas break and looking ahead to 2012, which should be another eventful year. Here’s hoping Cystic Fibrosis is kind to me for the next few months and allows me to focus on University. I suppose I ought to make it my new year’s resolution to place my health before University… although I’ve never been one to heed my own words of wisdom.
Thank you for your continued support and with over 2000 people now a part of the Living with Cystic Fibrosis Facebook community I must express my gratitude and wish everyone who has taken the time to visit the website, read my musings and offer their kind words during my recent hospital admissions, a very Merry Christmas and a Happy New Year.
Change is inevitable. Change is constant. So what am I to do? Being a person that would rather reject change, I risk sacrificing progress for the sake of my personal reservations. Ask anyone who knows me and they will tell you; "Ollie doesn't do change!" Well unfortunately for me the notion of change is irrepressible and the process has already begun. I have bid farewell to the Children's hospital and have been required to say hello to the Adult Unit. I have bid farewell to college and will (hopefully) be required to say hello to University.
Since celebrating my 18th Birthday last month (hence the embarrassing baby photo, courtesy of my mum!), I have found myself continually reflecting upon what has been an incredible chapter in my life. That is what I perceive the first eighteen years of my life as being. A chapter. It is often proclaimed that a Novelists' first chapter is the most difficult. The opening lines must resonate with the reader, they must be so compelling, so enticing that it makes it nigh on impossible to be lured by another publication. I can't imagine I'd have any difficulty conveying my life in the opening chapter, in fact I think I've probably experienced enough in my young life to fill an entire novel. As I begin a new chapter in my life, the turning of the page must, must be symbolic of the turning point in my life, I can't allow myself to endure the same times of heartache as previously experienced. A fresh beginning is imperative for me as I attempt to banish memories that hold such emotional ties. Yet it is so difficult because amongst my times of suffering I have experienced such levels of exceptional joy (such as Manchester United winning the Champions League!) that it is nigh on impossible for me to disregard the painful memories because that would mean foregoing the times of happiness. For me there is an entire year that I am constantly fighting to forget, 2007. My experiences during that year were so distressing that anything positive that happened has been completely overwhelmed and I have effectively lost an entire year of memories because I was battling so many issues that all stemmed from Cystic Fibrosis.
Whilst the transitional period of moving hospitals was difficult and the prospect of University is daunting, I have to look upon the changes that are taking place as positive, although that is difficult given that I am a 'glass half empty' kind of person! Moving to the Adult Unit has been the first major hurdle to climb, not because I did not want to go, but because leaving the surroundings of the children's hospital was tough. I have been treated by the same team of people for the past eighteen years and whilst at times I was not always grateful for the unwelcome treatment that they provided, they have ensured I have never been seriously ill and the level of care given to me has allowed me to escape the clutches of a hospital ward for nearly ten years. Since my first appointment at the Adult Unit, I have attended an Annual Review which was successful and very productive. My medication has been adjusted, a new nebulised antibiotic is set to be introduced and happily given that I overall I am feeling well at the moment I will not be required to undertake a spell as an inpatient anytime soon. To my surprise the last lung function test that I recorded posted a result never previously achieved, it was the best result in eighteen years, which is reflective of my current health. Whilst I do suffer from fatigue and aching I have not felt unwell to any extent and the aching limbs are easily resolved with a couple of paracetamol!
Moving to the Adult Unit coincided with my final A Level exams which on the whole were positive, but I do not not want to jinx anything prior to result day in August. I have to hope that I fulfill my expected grades, because heading to University to study Journalism is what I am planning for. Although a career in Journalism is presenting itself to be a bold move in light of recent revelations regarding a certain 'red-top' tabloid here in the UK. If it is my ambition to be an Editor of a media outlet one day I can't say I'd fair too well if I was hauled up in front of a select committee... given my social anxieties I would fall to pieces!
Leaving Sixth Form was surprisingly difficult, in view of the fact that studying for my A Levels was becoming increasingly tiresome and I didn't particularly enjoy the company of my peers. I spent the last seven years studying at the school and the routine to which I have been so accustomed has always suited my methodical nature and so upon leaving I suddenly found myself without anything to work towards in the sense that I have to simply wait until the 19th August to receive my results. It has been a difficult two years at Sixth Form, but I do not regret it nor do I want to forget some of the memories from that period. I do however need to approach the next view years differently and leaving presents me with the opportunity to be be the person that I want to be. I do not want to keep my Cystic Fibrosis a closely guarded secret, at school I spent so much time making excuses for why I was not in class or why I needed to leave in the afternoon that I could not enjoy being in that environment. Sometimes I regret being so private and when I look back at my time at school it only serves to strengthen that sense of regret. Year 9 was a turning point for me (back in 2007!) because how I was perceived by my peers completely changed. The first two years were great, I struck up friendships with so many people who looked upon me as a comedic character... well, I assume they were laughing with me not at me! But in my third year my absence put paid to that and after overcoming the problems when I returned for my GCSE's I found myself amongst different people and I was so reserved that I became resigned to the fact that I wasn't the same person from my earlier school years. With University beckoning I have the chance to strike up new friendships.
I left Sixth Form on a high note though, as I actually managed to enjoy the Year 13 School Prom, in which I was awarded student of the year, from 2009-2011. You can probably imagine how thrilled I was upon being summoned to the stage to collect my award!
At the present time I am using the long summer break I have to relax and recuperate and with the weight of exams lifted from my aching shoulders I can just take it steady. I still I have few issues that I need to resolve and I plan to meet with a psychologist at the Adult Unit to do so. For now though I am looking forward to a holiday abroad in a few weeks. Next month I will also return to my beloved Manchester United as a proud season ticket holder, after a two year absence I am back where I belong!
As you will no doubt of noticed I have once again redesigned the website. I taken time to overhaul the design and I have rewritten most of the content to ensure it is reflective of progress since launching the website in July 2009. Two years on from launching Living with Cystic Fibrosis I have made great strides in coping with my illness and my personal progress has been helped by the website as it has allowed me to share my thoughts and bring people with CF together. The Facebook page is continuing to thrive and is now the third most popular Cystic Fibrosis page on Facebook with more than 1,600 fans.
Over the past couple of years I have received a tremendous amount of support and so I have browsed my inbox and selected a few comments that highlight how Living with Cystic Fibrosis has become a source for which people with CF, or parents, family or friends can learn more about the illness from a personal perspective.
Would like to start off by reassuring everyone that Living With Cystic Fibrosis is still going strong despite my absence over recent months. I seem to go through phases like this, I reach a point whereby I feel like I do not have anything of note to write about and therefore avoid publishing a blog post. But, seen as it has been four months since my last post, I should have something worth reading (You can be the judge on that one!)
You have to go back to December 2010 since my last Living With CF post, at which time Tobramycin was the order of the day as I underwent my customary Christmas dose of antibiotics. Happily a powerful combination of Meropenem and Tobramycin helped me see in the new year feeling physically boosted and with a more positive outlook as I continue my preparation for my final set of exams.
In March I completed the first of my 2011 quarterly antibiotics, once again I turned to Tobramycin in a bid to ensure that I remained well heading into a crucial time on the academic calender. It would appear that the Tobramycin is here to stay after proving its worth in recent months. It's introduction has placed more value into my regular antibiotics as previously I had been sceptical as to the benefit that the Meropenem alone was having on my health. Safe in the knowledge that Tobramycin is effective I am much more happier with the treatment because despite feeling initially worse for wear during the first couple of days of antibiotics I know that come the end of the lengthy course I will reap the benefits that the treatment provides.
Aside from preparing for my final A Level examinations in the summer, I am also gearing up for the transition from the Royal Manchester Children's Hospital to a more local Adult Centre. All being well, and providing a couple of individuals at the Children's hospital complete the required paperwork in order for me to make my transition, I should be on the books at the Adult Centre in the next couple of months. A few weeks ago I went for a quick tour of the Adult Centre in order to familiarise myself with my soon to be new surroundings. The facilities are fantastic and the sight of talented chefs preparing food for the inpatients was evidence enough that I would be moving to a great, modern complex that will fulfill all my requirements. The visit did provoke a slight sense of apprehension. At the Children's hospital I am used to large open spaces, dozens of staff and patients and multiple facilities catering for different people. In contrast the adult Centre, despite being relatively large, it felt somewhat confined because it is a purpose built facility that provides treatment simply for patients with Cystic Fibrosis. I suppose I just feel like I will be under the microscope when I first attend the unit because everywhere I turn CF is prominent.
A couple of weeks ago I attended the Children's hospital to meet with a Psychologist that I had previously visited around four years ago during a period in my life in which I endured a difficult period as I struggled to come to terms with the severity of my illness and the impact that it would have on my future. I decided to turn to my Psychologist as I needed an outlet in which to discuss my concerns with regards to the upcoming changes in my life, such as the hospital transition and the possibility of life at University.
My personality dictates how I foresee my future, I am not one who takes kindly to change, and so the prospect of three years at University, away from the well aquatinted surroundings of my Sixth Form is conjuring up all sorts of fears as to how I will fair as a University student. Despite my reservations as to whether I wish to attend University and suffer the subsequent tuition fees which will be ever present as I pursue my chosen career, I have completed my application to enroll at the University of Salford in a view to study Journalism. Now, for those of you who live or have lived in Manchester will know that the region of Salford, is well... interesting to put it mildly, with an 'eclectic' mix of people. As such, I was originally concerned whether I would enjoy my time at University. I have always been adamant that if I did head to University that I would remain close to home for obvious health benefits.
So, when the opportunity to to study Journalism at the heart of MediaCity, a new £500 million project, became available I was quick to enquire as to whether I would have the sufficient grades in which to apply. Thankfully my predicated grades are good enough and after a successful interview I was offered a conditional placement. So, providing my actual grades total with that of my predicted I will have the option to study Journalism at Salford University, situated in Mediacity. For those of you who do not know about MediaCity, from Autumn 2011 onwards it will be the new home of the BBC (British Broadcasting Cooperation) and will encompass the finest broadcasting and digital technology facilities in Europe. So where do Salford University come in? Well they have been granted their own world class facility that boasts studios capable of educating 1500 students from September 2011. It is a fantastic opportunity for me to capitalise on the major development. Having visited the site in which Mediacity is situated, I am more excited about potentially attending a university course that will open up fantastic career prospects, not least because the BBC are literally next door to the media complex that will play host Salford University.
Below are some images illustrating the development of the project. It is an impressive project and one that has presented me with a opportunity in which to be part of an incredible new era in the media industry.
This Summer is certainly going to be eventful, I will be contending with my final A Level exams, whilst keeping track of my University application and I am due to move the CF Adult Unit which in itself is proving to be a daunting prospect. Summer 2011 is also the month in which my 18th Birthday falls within. Mixed emotions if I am honest, everyone is looking forward to celebrating the milestone with a party, but personally, not being one to socialise, I would be much more comfortable celebrating my 18th in front of the TV, watching re-runs of Top Gear whilst drinking copious amounts of... Tea!
Hopefully this blog post will suffice, and amend for my lack of blogging. For those of you that keep up to date with Living With CF on Facebook
, I would like to thank you for helping me surpass the 1,500 mark with regards to the number of people have chosen to follow my progress.
Tis the season to be jolly... that is unless your required to undertake a two week course of Intravenous Antibiotics. Funnily enough when I was outlining my Christmas wishes to Santa I did not expect to receive an early December gift in the form of a new addition to my treatment regime, Tobramycin. Most people choose to countdown the days until Christmas with the help of a chocolate filled advent calender, I however have had the misfortune of enduring fourteen days of treatment in the build up to Christmas.
Festive jokes aside, December is usually the month in which me IV treatment is due, and the only adjustment this time around is that Tobramycin has been added to my treatment and will now work alongside the Meropenem to help keep the Pseudomonas at bay, call it a coalition if you will, although I'm hoping that the combined antibiotics will work in greater unison that the UK's current coalition Government!
The reasoning behind the addition of Tobramycin is that there is a feeling amongst everyone concerned that relying solely on Meropenem is no longer sufficient enough to fight the Pseudomonas alone, so it was decide that the best option would be to call in the heavy artillery and add Tobramycin to my cocktail of treatment. According to a couple of my American Fans, Tobramycin is a "Kick Ass" drug, so here is hoping that the expression is accurate and I soon begin to feel the benefits of the new antibiotic.
The only downside to incorporating Tobramycin into my IV treatment is that upon the first course of using the antibiotic a few tests have to be undertake in order to determine the correct 'levels' required for my treatment. I don't fully understand the process but all I know is that a fair amount of blood has been drawn from my body! The new antibiotic has resulted in me making repeated trips back and forth to the hospital. Visiting once a month for a Port flush can be challenging in itself, but staring at the same four walls of a treatment room every other day is a task I would rather not participate in, but needs must!
There was a conclusive agreement regarding adding the new antibiotic to my treatment. Up until recently the Meropenem has always done the trick and as such more often that not I have noticed the impact that the treatment has had after the two weeks. However on the past two or three occasions I haven't really seen a significant improvement in my general well being. It is also probably a good time to introduce the antibiotic as when I move to the Adult Unit in 2011 it would be standard procedure to include Tobramycin in the treatment I receive.
Regarding my transition to the Adult Unit, last month I made a few inroads in terms of deciding upon the best time in which to complete the move. Due to exam commitments in both January and the Summer it was agreed that perhaps the most appropriate time to switch would be in the Spring time, most probably during March or April. I am also planning to visit the Adult Unit so that I can take a look around and see how the facility operates.
I have mixed emotions about moving to the Adult Unit. I am looking forward to gaining a certain degree of independence and I do wish to being to learn how to administer my own IV's. However it is a daunting prospect because the relationships I have forged with the staff at the Children's hospital has existed for so many years and I am now in a position of transferring my trust to a new team of people. I know that the staff at the Adult Unit are very capable and the actually facility has received widespread acclaim, but I think it will take me time to adjust to the new approach. In truth I have outgrown the Children's Hospital, I do feel slightly out of place when I attend an appointment at the hospital. Whilst I sit pensively in the waiting room, dressed in my formal school attire I am surrounded by infants, some of whom have yet to master the art of walking. A change of scenery is in order I think!
Whilst on the subject of my transition from the Children's Hospital to the Adult Unit, over recent weeks I have been working in conjunction with Lime Arts, who are an organisation based in Manchester than coordinates creatives projects within healthcare. As moving to an Adult Unit can be a daunting prospect, the NHS has enlisted the services of Lime in order to produce a informative transition pack that is aimed at easing any concerns that patients may have regarding the changes. I have been asked to contribute to a booklet that will be offered to patients who are making the move from the Manchester Children's hospital to the Wythenshawe Adult Unit. It has so far proved to be a great project to involve myself in as it has allowed me to apply my experience of deaign with CF and provide others with the support and reasurance they need during what is no doubt a difficult period od adjustment. The project will completed early 2011 and I am really looking forward to taking a look at the finished product.
The CF projects that I have involved myself in have also allowed me to gain invaluable experience regarding future career aspects. For thousands of people my age, the coming months are a crucial stage whereby decision must be made as to what you want to pursue regarding higher education or seeking employment. Personally, I remain divided as to whether to head to University or scour the few available job opportunities. I have just applied for a Journalism course at a local University, but at the moment it is purely there as a option because I am not certain of my future plans. I believe I would be well suited to a Journalism course because of my zealous attitude to writing, perhaps that stems from the confidence I gained when I was studying English Literature, who knew that analysing nineteenth century poetry was my forte?
So that just about wraps up December's blog post. All that is left for me to do is to wish you a very merry christmas and a happy new year. I shall wait with bated breathe for the arrival of Santa Claus and his gifts, although considering my mother has asked me repeatedly what would you like from Father Christmas this year?, in a tone that has become increasingly desperate, I get the impression that Mr Claus' sack may be somewhat lighter than in previous years!
Merry Christmas and a happy new year!
It has been a long four weeks. This month I have endured my annual review, a blood test, repeated lung functions along with a new treatment regime and a breakdown in communication regarding the conclusion of my Intravenous Antibiotics.
I was due to finish my two week course of IV’s on the 4th October and the line would be flushed and removed by my local community team. However, unfortunately the quantity of antibiotics required to flush the Portacath before removing the line was not available. The community team do not provide the antibiotic and the quantity that I had at home would not suffice. Needless to say I was not overjoyed at the prospect of having to keep my line in for the weekend, however my aversion to traveling to the hospital and waiting to be seen meant that I ad little choice but to wait until my annual review on Monday for the problem to be resolved. I wasn’t in the happiest of moods during the third weekend of having my line in; my family can vouch for my unhappiness!
The one problem with this time of year, aside from returning to full time education is that my annual review is scheduled for the same period. Any CF patient can verify that an annual review is one of those inconvenient necessities that suffering with CF results in. Firstly you are required to speak to the doctor, then the physiotherapist, along with the dietion and finishing with a blood test. My doctor is somewhat of a gregarious character who never fails to amuse. Admitting to my flaws regarding treatment and exercise was not the best idea, as my confessions quickly made up the basis of his literal notes! So, from one CF specialist to another, I was required to see the physiotherapist. I addressed various problems including my ongoing problems with my aching joints. This problem is becoming increasingly annoying and it would appear that there is no obvious diagnosis other than growing pains. It looks like I will just have to put up with my "clicky" knees. I sympathise with the elderly, I certainly feel like I have the joints of a pensioner!
Aside from my joint pains, my physiotherapist also raised the possibility of trying a new antibiotic and more specifically a new nebuliser in which saline would be added to my cocktail of antibiotics. For the new treatment I would have to return to the hospital at the end of the week to adjust to the new treatment and familiarise myself with what I am required to undertake. (I’ll go into further detail about this little session later in the blog post; it deserves a whole paragraph to itself!)
After concluding with the physiotherapist it was on to the dietitian to review my eating habits. After reviewing my food diary it soon became clear that too frequent Creon with snacks and meals was the problem. Given the amount of BBQ Beef Hula Hoops, Galaxy chocolate bars, bottle of Lucozade and bowls of cereal I get through each week it was decided that I am not taking enough Creon with individual snacks and consequently this may be affecting my weight gain. So, now I am on a mission to increase my Creon count and with the help of a handy iPhone app it seems to be paying off, slowly but surly!
Unfortunately an annual review is also the time in which a blood test is required. Thankfully I have managed to overcome my needle phobia and am now able to face the dreaded blood test, albeit with the aid of some "magic cream." The only part of the annual review that I can genuinely say I enjoyed was the removal of my line after seventeen days of being so cautious it is always a great relief to be free from the antibiotics.
After a long morning at the hospital, I was finally free from the clutches of the National Health Service, as wonderful as it is I don't like to spend anymore time than is required. That said, due to my physiotherapist wanting me to try a new nebuliser and antibiotics I was one my way back to the hospital just four days after my annual review.
Friday 8th October. After living with CF for more than 17 years I have had some difficult times, but the couple of hours that I faced on that day were quite possibly the scariest of my life. The new nebuliser (eFlow) is a nifty piece of kit, wort a fair sum of money. (I won't disclose the price, let's just say it would fetch a sizable amount on a certain internet auction website!) It is a saline solution, which leaves a foul taste in your mouth. I don't suggest you do this but, in order to gain an insight into what the solution is like try taking a mouthful of salt water, that is how unpleasant it is. On the upside you soon become accustomed to the foul taste, and the actual procedure takes only a couple of minutes. Needless to say because of the strong solution, it quickly irritates your chest and subsequently Cystic Fibrosis rears it's ugly head in the form of mucus. Unfortunately that day I had not been feeling very well, that day of all days I had a 'chesty' cough and so it is hard to judge the impact the new nebuliser had. But for me it was horrendous, relentless coughing and multiple lung functions meant that I had a torrid time and worst of all my mum was witnessing my struggles. I have always attempted to remain private about the effects of CF and therefore I don't feel anyone should be privy to such an unpleasant sight.
I left the hospital that afternoon feeling incredibly downbeat and for the first time in a good few years I was really aware of how violent CF can be. That afternoon topped of what has been a really difficult few weeks. I have not been feeling well and I have spent the best part of the last couple of weeks wrapped in my duvet feeling sorry for myself!
Looking ahead, well it would appear that I have attended my last annual review at the Manchester Children's hospital as I am now in the initial stages of beginning my transfer to the Adult Unit. It is a daunting prospect because I will be leaving behind the people who have helped me to come to term with my illness and although I have not always enjoyed my times at the hospital, the past seventeen years of my CF life have been in the hands of the same people and so leaving will be a difficult time. I am still very much reliant upon the same people, with whom I completely trust and so rebuilding that level of trust with a new team will take time, but hopefully, with no problems along the way, I am now ready to take responsibility of my own illness.
September. The month whereby thousands of people my age head back to Sixth Form or College to complete the second and final years of A Levels. It is the same for me too, only September is also the month of Intravenous Antibiotics. With regular three monthly IV's, it is around this time of the years whereby I undertake my third course of antibiotics. In March and June my IV's passed without a hitch, but in September I am always slightly apprehensive because feeling tired and under the weather during the opening weeks of school can be draining. It is always a busy time because I am preparing for a long year as I look to build upon my AS Level Grades and hopeful come next summer I will leave Sixth Form with grades allowing me to seek various University or careers options.
Whilst on the topic of University, I have just returned from a two day visit to the University of York. The visit is arranged by my school as pat of their ambition to allow Sixth Form students to both explore the opportunities
available within higher education whilst also bringing Year 12 students together with Year 13 students with various team building exercises. As a member of Year 13 I can't say I particularly enjoy the company of my fellow younger Sixth Formers, they just seem to well... annoy me. Overall York seeded to be a well established university with a inviting atmosphere. With only a few months left before I am expected to make my decision as to whether I pursue a course at University I need to begin to explore the courses available and where in England I want to study. At the moment it appears I am heading for a three year course in Journalism, however I still have not quashed a Business Studies course or even a Web Design course, which I have only recently considered, with the design of this website along with other projects it could be possible option. If I am being totally truthful I am still not even sure I want to spend another three or four years in education. Many of my peers can't wait to integrate themselves into University life, but for me I have to take a different approach to my future. Committing myself to years at University could be a risk , should be health deteriorate. At times I just want to throw myself into my dream career but landing my desired job is not easy given the current situation with limited job opportunities and minimal work experience places available.
If I did decide to place myself into higher education then preferably I would like to stay close to home. For all my moaning about living in Manchester it is where I have grown up and there is something about living in the North. However I feel that by simply settling for a University that is within close proximity to my family I am limiting myself to the options available. So who knows, perhaps I will find myself a degree course in moaning, that would suit me perfectly!
For now I have to concentrate on my current level of education as without my A Levels University is not even an option. In my AS Level results I managed a B Grade in English Literature, two C Grades in Business and Film Studies and in Geography... well I think I will just ignore that one (Okay so I flunked the exam, who knew explaining the role of mechanical weathering in the disintegration of rock in hot desert areas was so damn difficult?) It looks like I will be re-sitting the exam, which is not what I wanted, but I have not got anything to lose, because I surly can't do much worse than the first exam!
It is back to the long and depressing days at school, as the winter already begins to close in, I am preparing myself for late nights at school to ensure I achieve what I am capable of. I will be in at 8:00am and I will leave at 5:30, I must be mad! What kind of person actually wants to stay at school that late? For all it's annoying little traits, I still do enjoy school, mostly. For the most part I work in a relaxed environment supported by great students and teachers.
Whilst continuing with my studying this month, I also have upcoming Intravenous Antibiotics. Out the four, two week courses I undertake, the September and December treatment that I receive are the worst. Just a couple of weeks after returning to school and then the run up to Christmas it is always a difficult period for me. Now that I have a January exam I will also have to attend off timetable revision and generally work that little bit harder. At no point however, will I push myself to far, whereby I am teetering on the edge of ill health. Exams and qualification may be important, but as my Mum repeatedly reminds me; my health will always be the most pressing matter.
So that is all from this months blog post, I still don't know whether I should cover more in each blog post, because I sometimes feel I skim over a few aspects, but for now it shall do. Just a mention about about the CFCommunity which I am involved with, if you've taken a look at the Facebook page you will know that I am supporting the new website which intends to bring people together, so please keep a look our for it in the coming months. Thanks to everyone who has completed the survey on my website it has really helped me to look at what I can do to help more people cope with Cystic Fibrosis.
I have had a really hard couple of weeks, battling an persistent virus that was not going to loosen its grip on me until a large dose of antibiotics intervened. A visit to the hospital allowed me to sort the situation a devise a plan as to how best to treat the problem. My lung functions have dropped in recent weeks but I was comforted by the news that as I am a year older the percentage is likely to decrease regardless. Nevertheless I do still worry as my lung functions are the only visual representation as to how bad my CF is at any given time.
I have perked up in recent days, but prior to this I felt terrible. Day after day I would wake up feeling lethargic, unconcerned about eating and wanting to clamber back into bed. During the day was when I felt the worse and only in the evening did my symptoms show signs of letting up, only for me to go to bed and wake up feeling exactly the same as the previous day. It is fair to say it hasn't been the best start to my Summer holidays and now I am already thinking about the work I have go to complete prior to heading back to complete my final year of A Levels!
My most recent trip to hospital gave me the opportunity to seek the reason behind my ill health and the diagnosis was that unfortunately during this time of year there are a lot of CF patients suffering with a virus or infection of sorts. I also had to discuss my weight loss as I have been skipping breakfast and lunch during past weeks. My dietitian chose to politely ask "Have you ever taken any supplement drinks?" to which I promptly replied "Well yes, but they remained firmly at the back of the cupboard", the taste is just foul. Happily my weight had picked up over the past few days, with the help of a handy iPhone app I have been able to count my calorie intake and monitor my weight. Gladly, I am now feeling much healthier, my diet has picked up and my relentless cough has finally chosen to ease up and give me a break. It has been a worrying time and it haas been a bit of a reality check for me.
So that's my health out of the way, I would now like to mention the new look website. I felt it was time refresh the website and change the interface to make it more use friendly. I've added a much better forum feature and you can now post comments directly on to the homepage if you wish. Bits and pieces of information have also changed to keep everyone up to date with my progress. I hope you like the new design and hopefully Living With Cystic Fibrosis will continue to grow!
Its the 21st July and the first day of my Summer holiday, six weeks away from education. Its been a long year, when I think back to September all I can remember thinking is, 'not another two years of school.' Now though, I feel happy that i've managed to get though Year 12 without having much time off because of illness or hospital appointments. My attendance was around 92% which is probably my most successful year since beginning six years ago. I hope I can continue this as I look forward to beginning my final year of A Levels. In terms of health I have had a good year for the most part, the hardest moment being the course of IV's that I had to endure in December. Each day was so difficult, I was tired, I felt physically worn out and I was struggling to balance my treatment with studying. However, thats all behind me now and hopefully come August 19th when I receive my results I will be satisfied knowing that my hard work has paid off.
I finished my IV's last Friday and everything went well apart from my lung functions. If you have visited my Facebook page recently you will already be aware of how disappointed I was with my performance. I recorded my lowest ever lung functions, at 83%. Even though this percentage is still high, I have become accustomed to maintaining an average of more than 97%. Before hand I knew that they would probably be slightly lower than normal because I had been feeling under the whether for a few weeks prior to my IV's. however I was shocked and angered by the results as I realised that I had let myself down. I had been neglecting my treatment, mainly my nebuliser and consequently my lung functions exposed my failings. Positively, at the end of the two week course of antibiotics my lung functions improved and they are now back up to my average!
It may seem strange that I place so much importance on my lung functions, but I think if you ask others with CF they will say something similar to me, that lung functions give you the only real insight as to how Cystic Fibrosis is currently affecting you. They provide you with information that gives you more of an understanding of your current health and so when you see a decline in your results it can be worrying, because there must be a reason for such a dramatic decrease in your lung capacity.
My plans for the summer are as follows, relaxing and recuperating ready for a new term in September. I am hoping to find myself a summer job to earn some extra cash and give me something to fill my time with. With regards to the website, well its proving popular with over 1,200 visitors this month alone. In the coming weeks I will be redesigning the website adding new features and just generally 'tidying up' all of the information that I have added. If you have any suggestions or content that you would like added please do not hesitate to email me. [Contact Form]
I can't begin my blog without mentioning the World Cup, for a fanatical football fan like myself the next four weeks are total heaven, football all day, everyday! Sadly I am writing this blog less than 24 hours after England have failed to be the U.S.A in the opening game, same old England. I am aware about the number of American readers that I have on this website and Facebook, but I can't help but feel compelled to say, How on earth did we not be the United States at football? Or "soccer" in in their case!
Anyway, back to CF related news. June is usually the month whereby it is time for my IV's. Unfortunately it is also clashes with my birthday and exams. Happily my exams are over, I wouldn't say I was over confident about how they went but it certainly was not a disaster, I will just have to wait until August to find out. Over the past few weeks I have not been feeling one hundred per cent health wise. I seem to be struggling to shake of a persistent cough. It has not been easy balancing exams along with making sure I don't push myself too hard that I struggle to get better. It looks like I will be having my IV's at some point in the next couple of weeks and hopefully thy will work their magic and I will see a significant improvement of my current state. This ongoing health problem also appears to of suppressed my appetite. For anyone with CF you know that eating enough, regularly is really important for development so when you find yourself reluctant to eat it can be difficult to regain the weight that you need to. My biggest problem with eating is that I never feel like having any breakfast and considering I have been doing exams it has been important I eat a good sized breakfast. I just seem to wake up in the morning and all I feel like is a cup of tea!
Its just five weeks before I finish for summer and finally get a well deserved rest. It has been a long year and for the most part it has been enjoyable. I am really happy that I have managed to maintain a high attendance at school. I have not taken much time off across the year and in the last term I think I managed to have just one day off, for me that it an achievement.
A couple of really important dates for everyone to remember, June 21st is my birthday! As well as 11th July which is the day England play in the World Cup final. Wishful thinking perhaps but as an England fan I have to be optimistic!
Its Monday and the final week of term is finally here. Just a couple more exams this week and then I can look forward to a week free from revision lessons. I began my AS Level exams last week, Business Studies being my first. After finishing that exam I felt surprisingly confident although my buoyant mood soon dwindeled as the Geography exam brought me back to reality with a 'bump.' Last week I also had a Film Studies exam along with a General Studies exam, which to be honest seems totally pointless!
This week I have my second Geography exam along with my second General Studies exam. Although I feel I might be in for an uncomfortable last set of exams given the sudden 'heatwave' we seem to be experiencing. Hot weather coupled with being in an examination hall is not a nice combination. On the plus side I had a nice weekend, it felt more like the Mediterreanean, it was nice to see the sun out rather than the usual grey clouds which lie overhead in Manchester. I even had a barbecue, although the Australians would hang their heads in shame if they saw our feeble attempts of a barbecue, the food was good but we needed to use a disposable barbecue on top of the real barbecue because unfortunatley a years worth of dirt had taken its toll and so it looked a little worse for wear. It may not of been authentic, but it tasted good enough to me!
So just a short blog this week, guess I just have not been up to much. One thing I do know is that I now have a Port flush due this week. I also hope this hot weahter does not start to get tome, I will need to keep drinking enough fluids because dehydration is not what I want at this moment in time. No doubt the nice weather will soon vanish and the rain will reappear, the North without rain just in not the same!
Just a quick mention about the Facebook page which has suddenly attracted more fans in the past couple of days and consequentley I am close to reaching one thousand fans. (Or 'likes' as it is called now!) Thank you to everyone who has joined and it will be fantastic to reach that one thousand mark very soon.