My Journey: An adult carers story, written by a North Tyneside carer

My Journey with North Tyneside carers began many years ago before they were fully developed into the organisation of the present today. Way back in the day excellent support and guidance were offered with the frugal resource they had and at that time I felt ‘not worthy’ after all my situation wasn’t as bad as some of the amazing carers I encountered. There seemed to be so many more deserving people than myself needing the help, support and the little resource they had at the time, hence regrettably I struggled on alone taking what was on offer from social services without my own voice ever being heard. Now there is a script I could write more than enough for a mini TV series or two; ahhhhh but that’s for another time perhaps.


I care for my ‘now’ adult son who has Asperger’s, ADHD, OCD & ODD none of which are formally diagnosed as he is 31 years old now. 30 years plus ago these were barely recognised conditions if at all and as such he was labelled a ‘naughty boy’ and I was labelled an extremely over anxious mother. I assure you yes indeed at times my son was a ‘naughty boy’ aren’t they all and I was an ‘anxious mother’ but not without cause and not without reason. 


I could write volumes of books with the experiences I encounter along my journey as I am sure we all could and very similar situations, experiences and feelings.


So instead of writing those volumes of books at this moment I am going to skip forward to 2019 after years and years of trauma for both my son, myself and family ‘IT’ happened and by it I mean the unthinkable to me on that red hot summers day of 19th July. That year mid-afternoon right there in the middle of the office I work at in full view of all my colleagues, managers and friends I ‘broke’, yes I just totally broke. I couldn’t speak, couldn’t move, couldn’t think, couldn’t finish the call I was on with my customer, couldn’t function in any way shape or form. 


Now I know I had been like that every day for many many years but I had always managed to at least get through my work and do the job I was paid for and at the end of the day ‘just’ make it to my car before the panic set in, the knot became tighter in my stomach, the sickly feelings I’d held at bay from walking through the office door in the morning and then just as I’d slump into my car the tears would fall uncontrollably as I checked my phone to find out the days events and what I would possibly be dealing with once I arrived home.


But that day ‘IT’ happened before I could leave the office, before anyone could see the happy smile and pretence fade from my face there ‘IT’ was, in full view for all to see and I couldn’t do anything about it this time with my head in my hands on my desk. ‘IT’ had taken over me totally and completely. What was ‘IT’? I didn’t know but my manager eventually prized me from my desk to the break area, to get a coffee and I just sat for what seemed an eternity until this panic attack passed enough for me to whisper I was going home. All I could think of was ‘getting out of there’ and not facing anyone. No explaining just getting home to get sleep. Tomorrow would be fine and I would get through just as I had the last 27 years.  Work wouldn’t let me leave until I was calm enough to drive safely.


The next morning after some intermittent sleep I was no better, I still had no voice, that knot was still in my stomach, the sickly feeling was still there and the tears would not stop this time. I pulled the quilt back over myself and there I stayed for the next month. I was totally and utterly broken in every way, shape and form now. Exhausted yet I still couldn’t get enough sleep to replenish my energy. Friends and family rallied around. Why they ever continued trying to help me as I was disgusting to them swearing, shouting screaming for them all to leave me alone in this dark place I found myself in.  My son still lived with me at that time and I couldn’t even bare to breath the same air as him let alone be anywhere near him.  Was it his fault? Was it my fault? Was it friends and family’s fault? Was it work’s fault? Was it my ex-husbands fault? Was it society’s fault? I was screaming inside yet no sound came from my mouth. I couldn’t leave my room let alone leave the house but thankfully, I was eventually taken to my GP who along with medication gave me a list of organisations who could possibly help me. My cousin and friends recommended the Carers’ Centre strongly and made the very first appointment for me at North Tyneside Carers’ Centre. Phew what a day that was, I was going, not going, would be ok, didn’t need this, just needed sleep then I would be ok to function and carry on as I had been the last 20 odd years or so.


However in we walked (my friend escorted me there as I would never have made it on my own) and after all ‘I KNEW THEY COULDN’T HELP ME’. What could some stranger do to help me who didn’t know me and couldn’t imagine anything I had been through, the way I felt, I was totally broken. No one would ever be able to put these pieces back together, not even humpty dumpty’s kings horses and men would be able to fix the billion cracks I had in my mind and body.


Then we met Sue who guided us to our meeting room, got the coffee, water, biscuits and tissues at the ready. I just sat and cried virtually ¾ of the first meeting, all the things swirling in my head but too much to unravel even to utter barely a word.  Thankfully my friend had a list as long as her arm all written down ready to go through.  Poor Sue if it was all too much for me and my mind, goodness knows what she would think!! 


How wrong I was.  With the greatest kindness and abundance of empathy Sue began to unravel what was on the list and as we went through this more seemed to be added just for good measure. My head and heart were spinning, was all of this really my life right here right now all in black and white telling some stranger my whole life story but not being judged, frowned upon, ridiculed that I was ‘an extremely anxious mother’. All these things went through my mind as we were going through everything one step at a time.  All the things I thought about myself, all the things school, social workers and psychologists had said to me over the years about my son and myself swirled around,  I truly couldn’t see a way out, didn’t want to be there, didn’t want my life anymore, it wasn’t worth it. I WASN’T WORTH IT!


So as we began to unravel the list (which as I said seemed to be growing by the second), we prioritised what needed immediate attention and action for the bits that would wait a little longer to deal with. Sue immediately arranged for me to see NTCC’s very own counsellor. I had an appointment within a week (no where near the 3 to 6 month waiting list for talking therapies on the NHS). She gave me some written information about what courses were available and recommended the ones relevant to me to begin with. By this time the tears and panic had subsided massively, enough to listen and take in what was being advised and the help available. We even had a few jokes and a genuine smile came across my face for the very first time in years.


There we had it the very beginning of my journey to recovery. The counselling was nothing in the way I had imagined.  As I began to calm and take in methods and coping strategies then I could decide for myself the courses to attend which Sue had recommended for me.  Who knew this was all available right on my doorstep. I attended every course and meeting I could possibly have access to and initially had weekly meetings with Sue going through many many self-help sessions and for the first time ever being ‘TRUELY LISTENED TO’. No matter how minor or major the incidents from years ago right up to date, NOTHING was dismissed as if it was in my mind, there was a reason it still being there, so being able to ‘let it all out’ in a safe, professional, non-judgemental environment was and will always be worth its weight in gold.


Here I am just short of 2 years since my full nervous breakdown telling this tale. My son is living independently. I have been back at work for 20 months (all be it working from home since the pandemic). I now have the learning, strategies and skills to use that truly, truly work to not only function again in society and my life but I have a bag full of hints and tips instead of the massive heavy sack full of the troubles, trials and tribulations I have been through that I carried around for years. I have been given MY voice back, MY confidence, MY choices, MY life.  It’s not all plain sailing and it never will be. There’s no such thing as a perfect life but there are perfect moments, perfect days and perfect peace you can have if you truly want it. Grab every chance and opportunity of the help, support and guidance you can get from North Tyneside Carers’ Centre. Take every course available to you, not all the serious strategy ones, take the fun ones, the calming ones, the list is not exhaustive check it all out.  Then it’s your choice to use the parts of your learning you have gained that are appropriate to you and also pass on to help others as I now do.


I went into North Tyneside Carers nearly 2 years ago, a totally broken, messed up person who did not want my life any more but the words that Sue said to me echo over and over all the time;


‘No Elaine you don’t not want your life the way it is, lets change it’


Together we have. I have now found the peace, calm and happiness that I craved.


I have many new skills I never knew I was capable of. Learning about myself along the way so now I do not spend my every day routine of work, home, dealing with that days situations, then grabbing the tiny bit of sleep I could waking up and it being groundhog day yet again. I’ve found the pandemic an amazing extra learning curve, we have all had to deal with many, many difficulties so I made the best I could turning it into a positive where I could.  I started with painting stones for my garden to fully building a bar out of old pallets, with help of course but what an achievement for someone who didn’t have any kind of life only 18 months ago.


I am firstly eternally grateful to my Cousin for reminding me North Tyneside Carers’ Centre were there and secondly to my friend who took me to my initial meetings and thirdly to North Tyneside Carers’. Last but NEVER least to Sue; who saved me from myself and helped give me back my life. 


My journey continues. 


As everyone will never be without drama, troubles, tears and stresses but now I have the knowledge and continue to develop the skills. Who knew all I had to do was, ASK, LISTEN & LEARN?