Who Am I?

skydive

Recently I attended a self-awareness course, run by my housing association. The course was called Skin Deep, with different topics each week. The first of which was entitled “Who Am I?”.

This session hit a very raw nerve, as I’m still finding it hard to come to terms with the loss of the person I was before becoming chronically ill and I’m still trying to figure out who I now am. Hence the name of this blog, “Grieving for Me Because of M.E”, because I am trying to work out how to grieve for loss of “me” because of M.E.

Before I became ill I was Mum and carer to my son, who has Cystic Fibrosis. I was a volunteer at my local Citizens Advice, as a fully trained gateway assessor, adviser and an assistant trainer, as well as setting up and managing their social media. I also started up and ran the quarterly twitter event, called #CABLive, which highlights the varied and vital work of Citizens Advice outlets around the world.

In addition, I organised large Salsa parties a couple of times a year, raising thousands of pounds for various charities, including Birmingham Children’s Hospital and Breakthrough Breast Cancer.

In my “spare” time I enjoyed Salsa classes (and helped start up local classes), swimming, walking, Pilates, kickboxing, Zumba and gardening. And I once thoroughly enjoyed doing a skydive, to raise money for the Cystic Fibrosis Trust.

But that all changed in September 2012 when, after nearly 3 years of battling through it, my illness struck me down and took almost all of that away from me. I am still a mother (although he is now an adult, in good health and has flown the nest,) but the rest is gone!

As you have probably gathered, I was fit, energetic, passionate and hard-working. All that remains is my passion, but that’s almost cruel when I’m not left with enough energy and stamina to do anything with it!

My life mainly revolved around helping others and those closest to me feel that not occasionally putting myself first was my downfall and very instrumental in me becoming so ill. Yet now I’m the one who needs help, but it’s so damn hard to ask for and there’s precious little available.

So who am I now?

I’m still Barb and, ironically, energetic is still the first adjective that comes to mind if asked to describe myself! I still get enthusiastic and passionate about things, but ultimately this leads to frustration. I still push myself too hard at times and this can be extremely detrimental to my health. I still want to help and volunteer, yet am still to learn how to put myself first and ask for help instead of offering it!

In truth, I still don’t know who I currently am and what my place in life is. Yes I’m a mother, a daughter, a sister, an auntie, a great aunt, a cousin, a niece and a friend. But I can’t shake the feeling that I’m currently not able to be any of those things in the way that I would like to be.

Who am I? Currently, I am lost, but hopefully on a journey to find myself again one day.

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