I was born by C- section in 1988 in a small hospital in Liverpool UK but no one knew I had Cystic Fibrosis. It took me months and months of my parents feeding me every 2hrs to get to 6lbs so I would be allowed out the house. During these months my parents took me to doctor after doctor telling them I was chesty and not gaining weight but they got pushed out the door with me just diagnosed with "over protective parents". Finally when I was 8months old my parents celebrated my weight gain by booking our first holiday to Grand Caneria but while there I got really ill and they took me to see a doctor. Here the doctor was surprised and worried about my tiny, chesty, malnourished appearance and send us straight back to the UK with a added note stating "failure to thrive with suspected Cystic Fibrosis".
Back in the UK I had a "Sweat Test" (a standard test to measure the sodium in the sweat). Mine came back positive.
It was 1989 and I was 8months old and newly diagnosed with a life threating illness with the life expectancy in the 80's of just 14years old. I became an only child and that has stayed that way.
My childhood was privileged and well off, I had everything I could of wanted and was spolit daily. I was rarely "told off" or was said "no" too and spend lots of time playing and going aboard on holiday. School wasn’t pushed on me and I was encouraged to play and have fun.
It wasn’t until I was 6yrs old when I noticed that going to hospital appointment, breathing in nebulized smoke and popping 50 tablets a day wasn’t the norm for a little girl but I never asked questions as I didn’t want to upset my mum. I hated going to hospital appointments as I seen it just as a day of disappointing my family as I didn’t put weight on for the 14month in a row and been told swop medication or add a new daily one. A distinctive memory of my childhood CF was been told monthly “you need to be a good girl and eat more or you'll have to have a feeding tube put in". I took this as I was been a bad girl the whole time and could never please anyone no matter how hard I tried.
Getting up hours earlier than other my age day in day out for mixing and administering of Colomycin nebulizers, tablets and 30mins of physiotherapy was tiring all before breakfast. This was no different on a weekend. It was Groundhog Day.
My childhood memories linked to my CF aren’t the worst but where far from pink and fluffy, actually more like trauma for a little fail girl. An early memory of a 2 week planned stay in Alder Hey ward B3 (The CF Ward) was I had been waiting around all day on the ward for a doctor to come put the "long line" in my arm to get my intravenous drugs going. I had ELMA cream placed on both my arms to help numb my veins for hours and I was convinced and left with anxiety that the cream had lost its effiency. I was walked down the ward with 3 nurses to the "treatment room" where after they realised I was scared as a aggressive pit bull they lightly pinned me to the bed and trapped a tourniquet to my arms searching for a "juicy vein". I screamed, cried and begged to anyone who would listen or even just over hear me passing on the ward. I would see other children’s parents look in as I tried to lock eye contact with them hoping they would tell someone what was been done to me. This happened many times over the years but as I got older and I started gaining for control on the placement of the ELMA cream, the time I was getting the line put in and who was going to be doing it I held my tongue and anger inside.
I was about 7yrs old when I decided I didn’t want CF anymore and naively thought I could opt out. It was on ward B3 on day 1 of a two week stay when my mum was asking me to put my pyjamas on. I flipped, lashed out and cried running out of my hospital cubicle onto the ward half-dressed screaming to go home. I quickly learned that my resignation wasn’t going to change anything and I want going anywhere and just hoped all this wouldn't last long and my CF would be cured by these admissions....
Teenage Years
Teenage Years
From the age of 14 I started going to my hospital appointments with friends rather than my mum. It was encouraged to gain independence and learn to manage CF alone as I was becoming a young adult and soon I would be responsible for my own health, medications and choices. It did feel strange been 15yrs old in the waiting room and around me was parents with their children who were majority aged between 0-8 yrs old with CF. I could see the other parents staring at me wondering if their babies would live as long as me and where was my parents to take care of me.
I didn’t really didn’t need someone to hold my hand or speak for me at my hospital appointments, the staff knew me as been out spoken and not shy at all. I knew all the terminology from the fev1,FBC,TOBI,BD and of course IV’s to be allowed to attend without an adult.
ADULTHOOD
At 16yrs old I was transferred from a children’s hospital where I had spent all my life and which was my medical safety blanket to a large adult hospital for ages 18yrs- 100yrs +. I was the youngest at 16.
It wasn’t long until I noticed the differences. I have the choice to see the dietician, CF nurse or physiotherapist while I am now and I have to ask for help if I need it as I don’t have my parents there at all. I have been at Liverpool Heart and Chest hospital for 7years now and I fit in fine, all my teenage worries slowly drifted away and the hospital building and staff have become the norm.
As a young adult now at nearly 23yrs old on a mixed adult cardio ward there are nights where I still get scared and cry myself to sleep with fear mainly from the fact it’s a mixed ward with fully grown men and women with mental health problems but somehow I get through it.
The only anxiety I face with now is IV access, or lack off. It’s come to the point where after packing my bags for a 2 weeks stay, sorting child care and John’s time off work to only find out they can’t use my veins anymore as not even a standard Venflon will go in let along a long line.
At home I plod along with my CF and it’s just normal to have the daily stomach pains from taken or not taken creon, it really doesn’t matter I’m in pain with my digestive track daily and this will never change transplant or cure for CF, it’s here to stay.
My nebulizers, inhalers, nutritional feeds, tablets and grazing on food are what get me through the day and now I’m diabetic. I struggle now whereas I didn’t in my child/teenage yrs. I get breathless, wheezy and excused from even doing the weekly shop at TESCO and struggle having to unpack it all into the fridge. I have a PA provided by social services for 2 hours per day to help with the house chores and anything I struggle or can’t do.. Without this service I would be skin and bones as cleaning and maintaining a large 5 bedroomed house is a job in itself let alone how messy me and a 2yr old are.
I feel weak compared to John, physically and mentally although judging by my bossy mouth you couldn’t tell. He holds a fulltime job, a sick partner who’s pregnant and a 2yr old and has done for 7yrs now. I rely on John to do all the lifting and pushing of the pram when out and good help him if my sugars are low which puts me in a uncontrollable foul mood and then he’s got to do a 8hr shift at work that evening too. He has a lot of responsibility for a 21yr old. On the outside I look no different from anyone else and you couldn’t tell there was anything wrong with me so even John and my family are deceived by my exterior and mouth and don’t realise how much energy just been awake for me.
The most hurtful often recurring resentful memory I have as a adult is been compared to a healthy person of the same age. Me and john have had endless arguments where “why don’t you go get a job and I’ll stay at home” is thrown about and in my option defiantly overused. I have no choice and believe me when I say if I could I would have a fulltime job because for me that would represent 23yrs of taking thousands of medications to “fit in” like everyone else was worthwhile and basically a achievement. But I guess no one can be expected to understand 365 days a year.
It’s coming up to my 23rd birthday and the statistics of the life expectancy now for a Cystic Fibrosis suffers is 35yrs old. So with 13yrs statically left my daily thought is how can I make this longer so I get to spend more time with my 2yr old son, husband to be and unborn child .What are what’s my top things to do??
The honest blunt truth is I want to see my children have a normal childhood without 50 tablets a day, not be restricted to play in stagnant water and eat a healthy balanced diet. Yes that it. I would be naive and foolish to think or wish to see them graduate university, their first job or be here for their wedding day or the birth of their children. I have almost accepted that. But what I have learned in life is your childhood shapes our future and our personality. I have my kindness towards others and mouth from my mum and I get my sensitivity and teeth from my dad… I just hope I teach my children right from wrong, how to love and forgive and encourage with a slight push with their education and I’ll be happy knowing I did what a good mum is meant too..
So now I'll take a break from typing to go do my treatments and eat some food to make my fate move out the way and letmy plan take over to see all the life events many take for granted.
