Assisted Dying

Assisted Dying has been on the news again.  What do you think about it?  Is it wrong, should we let nature take its course.  I think in the world we live in we intervene in most things anyway.  Would we let nature take its course if a pregnant woman was unable to give birth naturally?  No, we wouldn’t, because we are a developed and modern country.  We don’t let animals suffer.  If the Vet said, “look it would be kinder to let them go”, we would usually take that advice.  So why are we comfortable to let our loved ones suffer when there’s another way.  Why should our loved ones have to travel to Dignitas in Switzerland ahead of time because of fear they will be too sick to travel.  It’s a very big debate.

I’ve spoken about this before with some close friends, friends that would choose this because of degenerative disease.  I fully support them in their decision. 

When I was younger, I used to think about my own situation and what route I would take.  This is before I knew about places like Dignitas.  You see, there will probably come a time in my life where I would need a double lung transplant and when I was younger the odds wasn’t that great on you surviving the operation.  I used to think, that’s not for me.  Waiting for a call to get new lungs, living your life waiting, to die on the operating table anyway.  Success rates are a bit better nowadays, but it’s still not great.  50% of people die waiting for a pair of lungs and 50% die afterwards due to complications.

I guess the main difference with my condition and someone that has something like Multiple Sclerosis (MS) is that MS is never going to get better and there’s nothing that can be done to buy time once you are too sick to look after yourself.  This is the point where people want to press the ejection button before it gets too much to bare.  The people making these decisions are fully aware of what is to come.  Otherwise you slowly go downhill and that’s it, to the bitter end.  I think the people that disagree with Assisted Dying have never experienced what its like to be sick every day.  It’s hard going.  You have to fight for every thing.  Basic things that most take for granted.  It’s physically exhausting.  Life doesn’t give you an easy time because you are sick and people still hurt you.

However, Cystic Fibrosis is a different fish.  You may want to push the ejection button, but you need to hang on until the bitter end for a second chance at the controls.  I’m not saying CF sufferers have a harder time, but the rules of the game are different.  Some decide to eject.  It’s a very personal decision, one I think the person should have and be able to action, at home.

What are my personal thoughts, well, I have Daisy to think about now and I will hang on for as long as I can.  And it's not a cure, it just buys some time.  I’m trying to get better with remembering all my treatments and medication but it’s not easy on your own, especially with a life limiting condition like CF.  

If you would like to give people a second chance at the controls, if you feel that some people could be saved, why not think about joining the organ donor register.  You can do your bit, I’m even on it and I didn’t think they’d want anything of mine.  I think my eyes and my skin are the only bits worth having.  

College - The HNC

College is finished, whoop whoop.  I’m so glad to be able to say that, as at times I thought I’d never get through it.  I don’t remember crying about the course but there have been tears, usually as a result of the cheeky buggers that manage the equipment store, accept the lovely Sean, he was brilliant.  I’m sure they deal with a lot of crap but c’mon.  I certainly recall having the weight of the world on my shoulders; maybe I was just overly sensitive.  I knew on applying for this course that I would be forced to do things I haven’t done before and how it would probably be a little awkward and uncomfortable.  However at the same time I think I thought it would be easy, how wrong was I!  My course was made up of the following subjects this term, Photography Theory, Darkroom and Creative Techniques, Portraiture, Image Editing, Creative Industries, Still Life, Applied Techniques, Social Photography, Corporate Photography, Stock Photography and the dreaded Graded Unit!

I started my course in September and realised by Christmas that I was struggling physically.  I made the decision over the Christmas holidays that I was not going to apply for my second year.  By the time I came to my annual review in February at hospital, my consultant said that my lung function had taken a nose dive since August and that confirmed that me being in close proximity to lots of people on a daily basis doesn’t help me, especially when we were in the basement of college with circulated air ventilation and no windows.  I can feel my CF followers instantly cringe. 

I struggled through that first 18 weeks of the course.  I was hospitalised with a chest infection and missed three weeks of class time.  But, I persevered and was in college full-time the last three weeks just to get through my work.  Luckily my deadlines were extended and I did manage to finish.  On my return after the Christmas break I was faced with a dilemma of, should I finish my course here after getting through that eighteen weeks or should I do it all again to leave with my HNC in Photography and not let all that hard work go to waste.  I’m not someone who gives up easily, but I do get easily over whelmed with mountains of work to get through.  I loved my class and I wanted to continue even though it was making me ill.  I knew that if I wasn’t going to go into second year I could effectively drop a class or two because the way the HNC works is that you need to obtain 12 credits for the group award and 15 to get into second year, which is all classes in first year.  Anyway, I took the decision to strip down my course and ditched my darkroom class, which you all know I can do anyway and stock photography, which I thought would be like watching paint dry to a portrait photographer. 

It’s not been all bad though, I’ve met a really great bunch of friends.  I’m sure we’re all going to keep in touch and I will go in and meet them for lunch now and again, even though the food in college is terrible and over priced.  The things we do for love……ah I feel a song coming on!  There’s so much more I could say.  I’ve laughed so much this past ten months being with these guys every week.  I’ll leave you all with a wee selection of some of the work I’ve done this term.  I will be back soon to tell you all about my Graded Unit and what sealed the deal to my overall grade A for the year.

Birthday in Paris

We had a bit of a crazy year with the old birthday celebrations.  Most winters I’m ill and I’m not really in the mood for organising anything.  Then others I’m full of beans and over the top.  This year we had an actual party and we invited all of Daisy’s school class.  Lisa Lollipop joined us to entertain the children.  We tucked into Hot dogs, Popcorn, Slush Puppy and enough sweets to stock a small shop.  One of the mums brought the biggest homemade cheesecake I’ve ever seen and it was all gone by the end of the party.  Truly Scrumptious – cakes by Joanna made the most incredible Birthday cake.  It was so beautiful I didn’t want to cut it up, again it was gone by the end.  People were loading up with boxes of the delicious cake.   My friends and family were as usual, all hands on deck and the party was a roaring success.  I'd like to say thank you to everyone who made the party special and for all gifts Daisy received.  

That would have been enough for one little girl to take in, but as I mentioned, I’m a bit crazy over the top at times.  I thought it would be an idea to go to Disneyland Paris, the very next day!  I only thought about it two or three weeks before the party.  When you are sick, it's not practical to book something miles in advance.  You have to go when you feel well.  The adverts sucked me in and before I knew it, it was booked.  I’ve priced it up before and thought it was a bit expensive, but there seemed to be adverts after adverts all over the TV saying “book now and get this that and the other free”.  You know sometimes these deals are not as great as the make out, but I swear this one was good.  We were staying in a top-notch Disney Hotel, having three course meals everyday, drinks and cakes everyday and practically spent nothing because we had a complimentary voucher for most things.  I couldn't believe our luck.

Daisy loved meeting all the characters, Spiderman, Merida, Woody and Jessie, Mickey, Minnie, the Disney Princesses and of course, no Disney visit would be complete without meeting Anna and Elsa!  There were a few hairy moments at the start, namely a scary roller coaster in disguise.  I've never been so glad to get off a ride.  I swear we though it was a child's train ride, you know quite tame, but Jesus!  It was a super fast roller coaster and believe me I'm no thrill seeker.  We got into our seats, I casually rested my arm behind Daisy and within seconds it became apparent to me that arm was going to move to pin Daisy in like a seat belt.  We saw the funny side of it, while mum and I were telepathically saying all our swear words.  Daisy was shouting at the top of her voice "this is fun", she had the best time. It was a very tiring holiday for the adults however. 

So if you ever forget where you were for your 5^th Birthday Daisy  Well, you woke up in a Disney hotel in Paris and had breakfast with Mickey Mouse.  Then we took the train into the centre of Paris and went up the Eiffel Tower.  I even managed to take the photo I would use on our family Christmas card.  Looking forward to our next adventure, whatever it may be.

The little things

CF is really kicking my ass just now.  I've been on this earth for a long time and I wonder when I'm ever going to learn that I can't graze.  I mean grazing as in picking/snacking at food.  Just normal things for a lot of people and something you might take for granted.  I can't do that, well I shouldn't.  I've had a upset tummy recently as well as all the other things. People who suffer from Crohns disease, IBS, Coeliac disease and the countless other digestive disorders that's out there.  I feel your pain.

I've had a sore stomach, bloating, cramping, wind, constipation, diarrhoea, hot and cold sweats and I've been feeling lethargic.  As you know the human body is a finely tuned machine and the symptoms I've described is evidence that the digestive system is experiencing trauma. Something people with Cystic Fibrosis suffer with because another element of the disease is that the digestive system doesn't function properly.  Enzymes need to be taken orally at the same time as food to digest the food.  It's pretty much a manual system.  Let your concentration slip and you will pay.  Like everything else there are varying degrees of severity.  Some people will need to take 1-2 tablets with meals, some like me might take 11-12 with meals.  As the pancreas loses function you can also end up being diabetic, but that's another story.

Imagine going to a party.  Oh you're gonna be one party animal if you have a condition that relies on you being sober and alert!  Let's think of a scenario. Would you be able to relax knowing you had to make a mental calculation of each mouthful of food you had from a buffet or bowl of crisps that were on your table?   Then, make a quick calculation, type of food+volume of food=number of tablets. Did I mention you can't just swallow them all at the start or at the end? Gets trickier does it.  What I've learnt over the years is that I have to avoid the bowl of crisps on the table and wait until the buffet is served.  I then go get a full plate of food. Full plate of buffet food x what type of food = amount of tablets.  Eat the food and and take the tablets during the meal; job done.  You want some more food.  Well you just repeat the steps.

Yes it's not very social but that's life as I know it.  At times though I fall off the waggon.  Usually when I get sick, I am even more forgetful.  I forget I can't graze like everyone else.  The trade off is getting an upset tummy and farting lots, sometimes for days. What I have to do now in this position is fast, not eat, maybe for 2 days.  Clear my system out and start again.  Hoping I will learn from my mistakes and not do it again anytime soon.

There's lots of things in life we take for granted.  Sometimes it's a way of life.  Sometimes it's people.  Appreciate the little things.  

Another blog brought to you from the bath tub.

My Love My Life 10/12 - Conquer Fear

© Ian Pettigrew

College have been speaking about the importance of personal projects recently.  Personal projects can turn out to be your best and most fulfilling work, because for whatever reason, you have specifically chosen to do it.  I recently stumbled upon a Canadian photographer, later found out he's half Scottish!  Well, he is currently working his way through a personal project called Just Breathe, where he's photographing adults who are living with Cystic Fibrosis (CF).  

Media coverage surrounding CF is sparse.  Since the birth of social media, I'm connected to a lot of people who have CF.  There's always somebody who knows a person who has died recently.  It can get really upsetting reading things like that.  It's not high profile like Cancer, but it's equally devastating.  It will kill you; it just drags the process out a bit.  Adults living with CF can often feel like it's a battle to stay alive, that's why they are often referred to as Warriors within the CF community.  Treatment regimes are physically and mentally demanding for patients.  Like many other long term chronic conditions, it may not be widely understood that family members can also endure years of emotional trauma as a direct result of caring for and/or living with the sick person.  
After being diagnosed later in life himself, Ian wanted to spread the message that this is no longer a children's disease and the best way to do that as a Photographer, is by taking pictures.  Lots of pictures! 

Ian started his career in advertising and got the photography bug by working alongside photographers for many years.  He used to think photographers had a glamorous life.  He admits he was wrong.  Just like I used to think the ladies behind the make-up counters in department stores were glamorous, before I did my school work experience.  Someone once asked him why he would want to be in a job that made him poor, but money isn't everything.  

As well as Ian's standard portrait head shots for his Just Breathe Project,  I found another one called Salty Girls - The Women of Cystic Fibrosis  Here he photographs CF women.  But, what does the name mean?  Well, the salt in CF patients bodies travel differently through the tissues to that of non-CF people.  Patients secrete higher volumes of salt through their sweat.  There was an old saying around the 1700s which went like this, "woe is the child who tastes salty from a kiss on the brow, for he is cursed and soon must die".  They used to believe CF children were bewitched. In this project Ian captures how CF can ravage your physical appearance.  I'm well aware of how the effects of CF have changed my appearance and body image.  I've always been a little self conscious.  It's healthier for me to weigh more, but society wants you to be thin.  I think it's very brave of the ladies to expose themselves like this.  It takes real courage, which I'm sure they have truck loads of.  

Ian wants his images made into a photobook.  If he can get enough financial support or even better a sponsor, he could make this a reality sooner.  If you are in a position to be a sponsor of this book, great.  If not, well you could always join the organ donor register in your county instead.  I'll leave you with some of Ian's images and one of me, which is my contribution to Salty Girls - The Women of Cystic Fibrosis.  Photo credit to the lovely Nicola Grimshaw and her team at My Boudoir - Make-Over Boudoir Photography.

© Ian Pettigrew

© Ian Pettigrew

                                                           © Nicola Grimshaw

My Love My Life 8/12 - Reflection

The topic Reflection when photography related, usually suggests pictures of subjects seen on reflective surfaces like windows or water.  I decided to be a bit out of the box this month and make mine reflection on a life event.  Daisy's first day at school.

It’s August 2014 and it feels like the last five years has been put on fast forward.  It's hard to get my head around the fact all this time has flown by.  We get caught up in the daily grind of life and it doesn’t leave much time for fun.  Now, we are here, at the school gate.  I seriously thought I would cry on her first day at school, but surprisingly I held it together.  She looked so grown up.  I think my biggest wobble was actually when I got the leaflet before summer telling me who her teacher was going to be.  It hit home then. I felt a little emotional buying her school uniform.  I know normal school shoes are usually black but I so love the traditional red patent shoes, she had to have a pair!  I kitted her out in a Cath Kidston bag, pencil case and stationary.  After all, this is a monumental time in our life together and the perfect time to indulge.

Three little friends from our street started school together and I couldn't be happier.  Although they are not all in the same class, they will see each other at playtime and lunchtime.  Daisy will be going to what we are calling the "school cafe", which to everyone else, is school dinners.  I really enjoyed that part of school since I was a traditional eater.  I wasn’t really interested in sandwiches, fruit and yoghurt, which is usually the kind of thing you would expect in a packed lunch.  Ok, I had the odd plea to my mum to have that but in most cases it was just curiosity on how the packed lunch kids spent their lunch hour.  We always want what we don’t have but the reality of getting it usually isn’t that great long-term.  For me, eating a hot school dinner with my fellow classmates was a social occasion and I'm hoping Daisy will appreciate that time to dine and chat with friends.  

School has been a positive experience so far.  We’ve had PE and homework.  We’ve managed to remember to put a snack in Daisy’s bag for break time.  We’ve even been to the school nurse when she fell and cut herself on her third day.  We are on our last week of half days and next week she is going to be in school all day.  I worry like everyone else with children starting school.  I worry if she will manage to fasten her shoes on her own as I still give help at home when she says “I can’t, it’s to difficult”, but she can do it.  I’m surprised she is able to carry her school bag, as it just looks so big compared to her body.  She doesn’t really chat much about what goes on in school during the day but make no mistake she doesn’t miss a trick.

I’ve met two really great girls since moving, who as well as being my neighbours they are also friends.  There’s never been any nervousness about the whole school event because our girls have played together in our almost cul-de-sac street for sometime.  I'm glad Daisy and I moved house and met new friends.  After all, nothing is scary when you share the experience with some great friends.

Please pop over to Sarah's blog on Reflection of her photography journey.  I love Sarah's photos, they always have a mystical feeling as well as creating the impression you were there.

My Love My Life 7/12 - Water

Last month I was away to Brighton for the weekend, four days later I was jet setting again with Daisy.  I just had so much on my plate I couldn't think about blogging.  I wasn't even sure I was going to be ready for this month but our recent heat wave has made it possible to grab some photos in amongst the school holiday madness.

We went to a swimming pool that I haven't been to since I was a child.  Stonehaven Open Air Pool.  I must say my childhood memories were somewhat different to how it is now.  I recall the last time I was there.  It was a cold day, the pool was freezing and I have vague memories of shivering and being generally miserable.  When my mum mentioned it was open for the summer; I felt a wave of dread.  I also found myself snorting at the thought of Daisy having to suffer just like I did.  It's a right of passage and what every other child in the surrounding area has to endure as a youngster, I thought to myself. 

We arrived around lunchtime and Daisy soon found some friends to play with.  She even knew one of the kids from her nursery.  I swear she knows more people than me!  The children's pool gave her more independence to play on her own.  She was having a great time catching the water out of the Dolphin fountain.  She must have been in the pool for over an hour before being beckoned out for a hot dog that I bought her from the cafe.  You don't have to buy everything from the café. There are various options to consider.  I saw a few families with their own picnics.  The cafe has a service hatch at the poolside and a seated area near the entrance.  Serving burgers, hot dogs, chips, ice-cream, sandwiches and hot and cold drinks.  There's something for everyone.

The main pool is huge.  There's a water slide at the deep end, which Daisy was disappointed that she couldn't go on because she can't swim yet.  The swimming lessons are in progress so I'm sure it won't be long until the water wings are a distant memory.  They also have an inflatable assault course that spreads across the width of the pool for the kids to scramble across.  It looked like a whole bunch of fun.  Since I'm on IV antibiotics again, it gave me a chance to have a seat and soak up the atmosphere instead.

My thoughts on Stonehaven Open Air Pool now?  It was brilliant!  Lovely weather, couldn't complain.  Daisy was splashing about in the glorious sunshine just like our holiday last month.  It has certainly helped erase the old memories and created new ones.  If you are fairly local and haven't yet been you must, or if like me you have bad memories from childhood you need to revisit.  If you get the nice weather I promise you will not be disappointed.

Don't forget to pop over and read the blog from Karen of K Lou Photography.  Here she talks about childhood memories and shows you the best things in life are free.

My Love My Life 5/12 - I want to Be

I want to be RICH!  How many of us say that.  There's probably hundreds of things I would like to be, but I guess the important ones usually fall into three categories.  Happiness, Health and Wealth

If you and your family had all three your life would be sorted right?  Lets talk about the least important one, money.  Now, some may think hey, wait a minute that’s the most important.  Reality check, if you are a sad Susan and your general health is not great, no amount of money is going to fix that. You may think it would, but deep down you are who you are.

Take a handful of lotto jackpot winners, do any of them still have most of their winnings. How many are still together with their spouse or partner.  How many have totally screwed up and made an arse of it.  Probably quite a few!  They say money doesn't bring you happiness, but what it does bring is choice.  Imagine being able to choose what you do everyday instead of having to get up and go to work.  If you want to have money, the thing you must actually master is good decision making because without that you will likely fail.  

I think you'll find that most people that do have lots of money are very ruthless. Probably the reason they have it in the first instance.  Money is a dangerous commodity; it can change people.  Some it may enhance their lives, other it will ruin theirs.

If you are a person, whose main focus in life is to be rich, you are an equally ruthless character.  Blinded by the pursuit of perceived wealth, they will do whatever they see necessary to get their hands on some cash.  Like, the duplicitous women that bait married men in the hope of getting a cut of the family fortune.  Yes it happens.  We read about it all the time and it’s not just a problem for the rich and famous.  For some, money and success is so important they dismiss the feelings of others.  They forget to be grateful for what they have.  

It would be nice to not have to think about money, but the reality is most people work for years hoping to get to that position.   Sadly, as you earn more, you want more and you'll never get to the point where you don't have to work.  It is easy to say money can't buy happiness.  For some people struggling financially it can seem like that is the missing part of the jigsaw.  I get that.  I think most people believe it’s the answer to their problems.  Most people want to be rich.  Guess what, it's not going happen.  Sorry to be blunt.  

If you take one thing from this blog post it should be this.  Be thankful for the air that you breathe because you know what, some people struggle doing that.  Be thankful we live in a fairly civilised country.  People around the world don’t have enough to eat.  Some are living in war zones, others are drinking sewage water exposing themselves to serious health issues.  Look around you at things you have which money can't buy.  That's what makes you truly rich.  And, as my mother would say “there are people a lot worse off than yourself.”

Please pop over to my good friend Evy's blog, where she talks about her hopes and dreams for her two beautiful girls. Click here

The Second Trimester

So much happened in the second trimester, some great, some extremely stressful and scary.  Turkey was good for me, just the break I needed and lets face it, I probably wasn’t going to get another for a few years.  This blog is a direct follow on from The twelve week scan

My mum has friends in Turkey, they live on a farm way up in the hills far away from the regular tourists.  It’s pretty basic, almost like Roma villages you see on television.  We stayed for the night and I was really cautious I didn’t eat anything.  There’s all these lists in the western world about what you can and can't eat while pregnant, but in places like Turkey you eat what you have and milk comes straight from the cow.  I slept on the only bed they had in the house, under a mosquito net that my mum had purchased for them a few years earlier.   I lay on the bed listening to bugs flying about and it made me feel really grateful for the life style we sometimes take for granted here in the UK. 

Once home the hospital appointments started up again.  I was seen frequently, usually every two weeks. We were a little upset that my husband missed the twelve-week scan but being seen and scanned again at fourteen weeks made us feel happy.  I actually felt really good in this trimester.  I had loads of energy, no morning sickness and I was out buying or looking at baby bits and bobs every chance I had.  I started a Pilates class early in my pregnancy and when my stomach started to grow too big I found a pregnancy yoga class.  I wanted to be in the best possible shape for what lay ahead.  I also had to think about parting with my beloved pink smart car. My favourite car ever!  We planned a little holiday to Cornwall, driving about and exploring was just the thing we loved doing.  My cousin who lives down that way was seven months pregnant and I thought it would be nice to go visit her, you know so we could compare bumps.  It‘s somewhere I’d always wanted to visit and it was scorching hot, just like being abroad.   My husband was a bit of a Rick Stein fan so we were definitely going to visit Padstow.  It was so lovely, we knew we’d return one day with Daisy in tow.  I bought her first toys in a Rick Stein boutique; at £40 each for some crochet rabbits Daddy Bear needed a little persuasion.  I will treasure the memories of that grumpy face, so to make him feel even better; I bought a bloody cake stand too!

I was really looking forward to starting my first antenatal classes but unfortunately, my dreams of a “normal” delivery were shattered when I was diagnosed with Placenta Praevia.  It can correct itself as the pregnancy develops and plans can change right through pregnancy from one week to the next.  I soon needed another course of IV antibiotics, as my body wasn’t coping.  My CF team were voicing concerns about a vaginal delivery knowing I was struggling to breathe and I resigned myself to the reality that I was going to have a planned caesarean section.  There were a lot of mixed emotions around this time because of the worry surrounding the various tests that are carried out to determine major birth defects.  This included the 20-week scan, which we were looking forward to, but there is always that worry we would find out there was something wrong.  By this time you look pregnant, you have accepted you are going to have a baby.  I could not imagine finding out there was some serious birth defect at this point.  How would we deal with that.  I remember my mum trying to explain years ago that your thought process is completely different when the baby is inside you.  I had casually said in my teens that I wouldn’t keep a baby it if had something major wrong with it.  I used to think a cleft lip was major defect and that I’d never keep a baby with that.  I guess our beliefs change with time as we mature.  We came home with another handful of scan photos and there was a really cool one showing her curled up in a ball showing all of her spine.  The lady said that was the best possible picture you could get to check the spine was normal.  

Even though I was clearly unwell at times, I loved being pregnant and our happiest times as a couple since the early years of marriage were around this pregnancy.  As I started to get bigger I suffered from leg cramps and foot cramps.  I think it’s pretty normal, but it was scary at the time.  So many changes is happening in your body and being ill I worried if it was normal or was it just something that was happening to me.  I had a good run of weeks feeling well so we organised a family meal with my late father in law and his parents.  I even went out and bought a new maternity dresses for the occasion.  I was feeling really good.  I wasn’t that close to my extended family.  Relationships were somewhat strained, but I was slowly trying to accept that not all families are like your own.  My husband was supportive of my beliefs and I was going meet him halfway in being more tolerant of the situation for the sake of our little family.