Mothering Sunday is more than 1 day, but an opportunity to express just how much she means to me…

Whilst I acknowledge that every day it is important to appreciate those around you every single day, I believe it is special to have a dedicated ‘Mothers Day.’ I don’t believe that it requires any lavish gifts but I think for my mother it offers an opportunity for her to remember how valued she is, and not under-estimate how much my sister and I care about her. Those who know me, will know I am grateful for a lot, I view most endeavors as a fantastic opportunity and learning curve and will readily offer a thank you accompanied by a handshake or hug. Despite my ability to thank people, I am very similar to my mother in the way I avoid expressing sentiment…. I am the person who won’t buy a card if it has a soppy message in. The exposure of sentimental raw emotion is something I am not familiar with expressing verbally as much as I try. My friends and family know that a verbal compliment from me is high praise indeed. Mum and I - Lyme

Today is the day my mother will finally get that true appreciation, but through these written words as once again I back out of saying it to her.

The teenage version of me was polar opposite to how I am today, from naturally being a stubborn defiant teenager alongside struggling with my mental health and physical health – my relationship with everybody wasn’t straightforward. My mum stood by me and was my carer but that doesn’t mean she had it easy by any means – really didn’t. Being my carer was not easy, it meant altering her entire life and entering new territory for us both, whilst in reflection we would never change her involvement, I now realise, I definitely didn’t appreciate it at the same level as I do now.

As a young adult, I am fully aware that I don’t just share aesthetic features with my mother but I have so many similar traits and hold the same life values and beliefs. Together we are those people who have the ability to know what the other is thinking, we will turn around, simultaneously saying the exact same words. We thrive in each others company and can work alongside each other with no problems at all. We never argue as one of us will admit we are grumpy before we say something we regret and if the odd occasion occurs where we have very different opinions, we explore it and debate those  interesting views and perceptions.

When I celebrated mothers day with her a day early (yesterday), she presented me with a very special cuddly toy. I have had a tough few weeks and she knew this, so she bought me up the same toy that she bought for me when I was on a pain management course in Bath as a teenager. We were staying in flats associated with the hospital and I had refused to goWinnie out with her and I think it would be safe to say that I may not have been as polite or diplomatic as I  have learnt to be. Despite being hurt and upset she went to the Disney store and purchased me ‘Winnie the Pooh.’ I love to feel different textures so to receive him yesterday is just one example of her thoughtfulness and how well she knows me.

This last year I can truly say has been hard – it is nearly a year since I embarked on the 8 month admission that altered my life. To have an unexpected emergency admission into a London hospital was something my mother had always feared, but we had never anticipated the severity of it. To be miles away from me unable to see me but knowing I was so unwell was heartbreaking, even when I was repatriated to Reading or in neurorehab, it was still over 100 miles to get to me. It was tough for her to step back and not see me very often but during these 8 months we reestablished the amazing relationship we were destined to have. I became an independent Young Adult that happens to be her Daughter, and she became my mother rather than my carer. I still have times where I need a little help (somehow haven’t quite learnt to fit housework in yet – but it is likely that I conveniently accept her help on that one). She is always there when I need her and we have mutual respect and love for each other. The mother-daughter relationship we have is so very special and holds memories neither of  us will ever forget. These are good and bad, some have humour only we understand. Having to persevere and fight for every part of my care and treatment has strengthened our relationship and whilst I may struggle to open up and explain if I am upset, I undoubtedly know that she is there and will drop everything to be by my side whenever possible. I couldn’t ask for anything more from her.

The last year has contained numerous ups and downs for both of us, including a number of close bereavements and we therefore strive to continue to be open and honest, to do those things that mean something to us and to make memories every single day. My mum may always naturally worry about me, but is incredibly special to me and never stops me from living the life I want to lead. To grow up learning from her as my role model gives me phenomenal strength and determination that I vow to always utilise in my life. I will never forget the first time she saw me speak at an event and just how much pride she held.

Mum – thank you for being the rock that you are, never forget your value and lets continue to share  the rest of 2018 (and many more years) together, making those memories as a family unit and never holding regrets. We both have so much to give to the world and I consider it an honour to be able to call you my mother (as well as my partner in crime).

I can create my own Uni lifestyle…

How do I balance education with health? To get an accessible room, I live with first year students – ‘freshers’ and the majority of my flat are very clear that they want to make the most out of drinking and making noise as that matters to them. When attending University, my main apprehension was that I wouldn’t ‘fit in,’ years of being self-taught and profound social anxiety made me worry I wouldn’t find people that liked me or could accept me for who I am. It is bizarre when I am representing other people, my purpose enables me to manage and function ‘normally’. But when I have to show myself as a young person with no cover, that is when I struggle.  But I don’t need to struggle…blog

Not everyone at University enjoys the social life that is encouraged and promoted, and I really don’t fit into the clubbing or drinking scene. I fought so hard to get to University that I just want to perform academically – that is #whatmatterstome. Only now am I realizing that I don’t need to feel pressured to go out or to see people every night – it does mean I don’t make the contact with friends that maintains the relationships, but I don’t want to pretend to be someone else. I am the person that needs to take time to be true to myself, I need to continue to spread my wings and accomplish the tasks that are important to me.

 

 

We are all human…

Before I start, this blog is in no way a reflection of a specific trust or ward – it has been created from my personal experiences, but I intend to keep it general and all of it is my personal opinion, it is not linked to any specific affiliations I have with organisations. All names have been changed to protect confidentiality.

 

I so often write and document about the patient experience but what I want to do today is to acknowledge the staff perspective.

I remember arriving on a ward where I was greeted, and they wanted to know how to transfer me between beds. Nurse Sarah stood there and asked me about if I could shuffle or use the pat slide – I made a sarcastic comment that would have been quite funny for those who knew me but it lacked appropriate timing. It was clear it wasn’t the best timing and I realized that it had been taken the wrong way so apologized immediately – we spoke again afterwards, and it made sense (she was doing my nurse a favour and so hadn’t had handover as to what was wrong.

 

Nurse Sarah was on shift the next night as well, and as soon as I saw her I once again expressed my apologies and it was all forgotten. This communication was so important – we understood each other.  It was a very tough shift for the staff, but as patients we often are only aware of what is occurring in close proximity to us. Sometimes we need to take a step back and realise there is more going on than what we think.  We may hear noise or abuse but other than that, have no idea what is happening in other bays or behind closed doors.

I witnessed such a heartfelt moment and it really resonated with me the journey that staff have to go through. I know that when I show familiar staff my progress, the pride they feel can be overwhelming, they too share my success – we all have participated in the journey together.  Mine is a good story, many a time I have shared the highs and lows with staff, but others stories aren’t as positive.

When people are on end of life care, the staff are equally involved – it can be tough. It doesn’t matter how long or well you know someone, witnessing the family grieve or being the last person to sit and hold someone’s hand can be hard. I have witnessed this happen numerous times and find it hard as a patient, but when it isn’t happening in front of you, we still expect staff to carry as if nothing has happened.  They may be in a professional capacity, it doesn’t make them mechanical or indestructible, even those with the toughest of exteriors still feel emotions and need to take two minutes to digest what has happened.

 

I became aware of the deceased as heard the family grieving, it is always tough to hear and see – and it wasn’t easy for the staff either, the night was chaotic and filled with other noise and other pressing issues. Yet those nurses kept going. Sarah wasn’t my nurse but when she was continuously working non-stop and I could tell she was trying to keep going. The pressure and circumstances she was under was tough – it was not a good shift for any staff. I sat up and spoke to her as she passed me, I paused, held her hand and gave her a small bit of comfort whilst she started to shed a tear. She apologized that she was emotional and said ‘I should be comforting you, not you helping me.’ Now, for me, I would offer that to anyone – we all need that reassuring pat and those 2 minutes to pause and recalibrate.

We didn’t talk about the other patients, instead all we did was be present and feel those emotions –words aren’t needed. When something isn’t going right, it isn’t always that persons fault… sometimes we need to empathise with the work they are doing.

We are all human, we can all accidentally say the wrong thing and can all feel emotions. Next time, try and look at the situation from all perspectives – never forget that other things are happening around us.