Celebrating a Day That Changed My Life Forever

One day oldEighteen years ago today my whole life was turned upside down and I fell in love like never before, or since; my gorgeous son, Josh, was born.

Like all mothers and sons, we’ve had a rollercoaster of a relationship over the years, but now it is better than it has ever been. Admittedly this is largely because we no longer live together!

Josh had a tough start to life, dogged with health issues and constant doctor’s appointments trying to find the cause. It wasn’t until he was 6 years old that we finally got a diagnosis of Cystic Fibrosis (CF), a genetic condition that is caused by both parents being carriers of the faulty CF gene. For more information about CF please see the link at the bottom of this post.

The six year old Josh took the diagnosis really well, in truth it was a relief to get some answers and know that there was some treatment available to help alleviate his symptoms. The fact that CF is a life limiting, degenerative condition with no cure has never seemed to faze him and thankfully with new and improved treatments coming through all the time the average life expectancy seems to increase with every year that passes.

Overnight Josh’s life became all about trying to guestimate the amount of pancreatic enzymes to take before all food and drink that contains fat, daily medications (vitamins, anti biotics, steroids etc.), learning about different anti biotics (maintenance, first line, second line, intravenous) chest physiotherapy to keep his lungs clear of mucus, nebulisers, regular appointments at Birmingham Children’s Hospital with regular tests like x-rays, bloods, ultrasounds, lung function etc. Then there’s the trying to get the right balance between living a “normal” life, but being ultra careful to keep away from people with coughs or colds, to avoid getting a chest infection that could damage his lungs! Along with learning about “the birds and the bees” he learned that the CF may in fact affect his fertility.

However, Josh took all this in his stride, yes there were days that we had arguments and tantrums over his daily treatments and medications, particularly on holiday, when he was very frustrated to learn that there was never a holiday from having CF!  It even got in the way of him collecting his GCSE results, as he was in hospital for a two week course of intravenous anti biotics. In fact, he’d battled through his exams in the worst health he has ever been!

When I first became ill myself, with ME/CFS, Josh was 14 years old and just starting his GCSE courses. I’d be lying if I said he was one of these kids that instantly became my carer and took over all the household chores, but he did grow up a bit more quickly and learned to do more for himself. I was determined not to let my illness affect his life too much or get in the way of him being a teenager and having fun. But of course it has had an impact (whether he’d admit it is another matter) and there are things I haven’t been able to do with or for him because of my limitations caused by my illness.

When Josh started his GCSE courses his career aspirations were to work in weapons development, and by the time he sat his exams he wanted to be a physicist, but despite a very keen interest in physics and having the academic ability to reach that goal, it was clear that his heart wasn’t really in it. He had realised that after his GCSEs would be a good time to try life living with his father (we split up when Josh was 8 years old), who lives 100 miles away in Berkshire, so Josh applied to a 6th Form down there. Frustratingly, partly due to his poor health and I believe partly due to his lack of inspiration, Josh’s GCSE results were not what they could have been.

However, this turned out to be a huge blessing in disguise! Josh had in the last year picked up a guitar we’d bought for him several years previously (he’d had some lessons, but no real interest), and gone onto YouTube and starting to teach himself to play. Now that he was faced with the realisation that he didn’t quite have the grades to study the A Levels that he wanted, Josh started to look for other options. He found a music course at Reading College and was excited to discover that he could study his newly found passion and get a qualification, BTEC level 2 in music!

Two years on and Josh has spent time playing bass guitar in a band, with several gigs in pubs and at music festivals around the South East, has just completed his BTEC Level 3 in Music Performance at the Academy of Contemporary Music in Guildford and is going to Bristol in October to do a Bachelor of Arts degree in Professional Musicianship at the Bristol & Irish Modern Music Institute.

20160724_165050 editTo say that I am proud of my son would be a massive understatement, he has faced huge challenges in his life, but it has not stopped him from making the most of life and pursuing his dreams. Music is his life, to hear him play or talk about it you wouldn’t believe that it is only a fairly recent discovery for him. I believe that to discover his passion in life at such a young age is a true blessing and he is embracing it every step of the way.

Life truly is on the up for Josh now, a relatively new drug, Kalydeco, has been made available for him and many others with CF (although not all) that has hugely improved his health and drastically reduced the amount of medication and treatments that he needs. Now he no longer looks or feels like a sick person and has the energy and stamina to take on new challenges with oodles of enthusiasm. For more information on Kalydeco see the link at the end of this post.

Today marks josh becoming officially an adult, yet in so many ways he has been very much an adult for quite a while in my eyes. I know I am biased, but he is not your stereotypical teenager and never has been. He is not selfish, stroppy or self-centred. Oh yes he’s had his moments, but they have been just that, moments. He is a very thoughtful, considerate, empathetic, communicative and kind young man and an extremely intelligent conversationalist! I could not be more proud of him!

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HAPPY BIRTHDAY SON, I am so very proud of you and the man that you have grown to be and I am so very excited about your future, as I know you are destined for great things. You are my shining star, keep shining brightly like you always do!

I love you, always, Mum  xxxx

 

For information about Cystic Fibrosis: https://www.cysticfibrosis.org.uk

For information about Kalydeco: www.kalydeco.com

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An A* Friend with a Paddington Stare

I need to tell you about my wonderful friend, “A”, someone who truly deserves an A* in the friend stakes. We met through a mutual friend that we both worked with before I became ill. Very quickly we clicked, but it was the year I became ill that we became much closer.

Her marriage had come to an end and having been through marriage break up myself, I was there for her as best as I could, helped her move house and did a fair bit of work tidying up her new garden. This was a matter of weeks before I became very ill and I find it quite surreal thinking back to what I was physically capable of doing back then!

Anyway, the month after “A” moved my body completely gave up on me; I was unable to go to work or do anything that I had before. The following months I went through constant GP appointments, referrals to specialists, tests etc. until getting my ME/CFS diagnosis. Throughout it all “A” was there for me, believed that I really was ill and was one of the few people who had a real understanding of what I was going through. “A” has the autoimmune disease Rheumatoid Arthritis, so truly understood what it felt like for me to have my health rapidly decline, live with constant pain, be unable to sleep despite being dog tired and then having to deal with being diagnosed with a chronic, fluctuating but debilitating illness, with little or no hope of a cure.

Since then “A” has been my constant rock! Some of the things she does/has done for me are:  ensuring that I get out of the house at least once a week; checks on me by text in between times; endeavours to keep my thinking positive; keeps my “what’s the point?” moments in check; scraped me up when I hit rock bottom; enables me to go to the cinema, theatre and even the occasional few days by the sea; helps me run errands; helped me move house on a very cold February day and even stayed with me the first night, even though I had no heating, hot water or cooker! The list goes on.

“A” never has any expectations of me; everything is always done at my pace and in a way to suit my needs on the day. I can be completely honest with her, even on my darkest of days, I can cancel or change plans if I need to because I’m not up to it. She never judges, complains or criticises, but on rare occasions has given me a good talking to and a “Paddington stare” when required.

On top of all this she has on a few occasions driven me to my parents, who live 100 miles away in Hampshire, enabling me to attend important family occasions. And then just last week, dropped everything, took the day off work and drove me the 200 mile round trip to see my son who’d had emergency surgery; just so that I could see him and give him a hug!

I would quite simply be utterly lost without “A” and my life would be significantly poorer without her in it! Having such a very special and completely selfless friend is a great honour, but is even more valuable when you’re chronically ill and so many other “friends” have fallen by the wayside over the years.

“A” truly is a very special lady and despite her own health challenges is very generous and giving in all of her other relationships as well, I know there are many that would testify to this!

So this post is a tribute to “A”, my humble little way of saying thank you for all that you do, for me and for others and for your abundance of patience. But it is also a tribute to all the other friends, partners and family members who help someone who is chronically ill to face life’s daily challenges, to keep a positive outlook and to keep smiling.

So, to all of the A* friends out there, especially mine, THANK YOU from the bottom of my heart, you are all amazing and make such a huge difference!