Tag: #neurorehab

My Social Identity through Twitter

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People create a online social identity of the person they want to portray to the world, an identity that can convey whatever meaning they wish. There are pros and cons to this across many different aspects and I certainly have experienced both. Today it is the positives.

Over the last few weeks it has become more apparent to me that alongside many others, those close to me in the ‘expert patient,’ ‘patient leader,’ ‘advisor’ roles use this far more than people realise.  There are times when we strive to do everything we can to promote patient voice because we are so passionate at reaching out and making a difference. Those stories are the ones we tell, the stories that explain our achievements and often ‘conveniently’ forget a large proportion of the negatives. We may not always acknowledge the challenge nor the wider holistic issues that are continuing around us.

I try to convey the positive message as much as possible, the benefit I have is that my social identity through twitter reminds me of my positive events, the achievements I never believed I would have. The days where I have achieved something and made a real difference. The last few weeks have been testing to say the least but what I can take from that is how I have continued to make more and more achievements, increasing my opportunities and development tenfold.

This evening I take my step into true independence, I was halfway there but needed a nudge to make the full jump – I have to leave Somerset behind for a minimum of a month. I have to take the step to balance my own psychological & physical needs as a priority and I cannot do that without a level of separation – I need to not have the distractions that are based there, I need to take time to grieve the losses I have had this year and to overcome recent challenges. I began this step today in an effort to nurture myself and prioritise self care. It turns out that my first plane journey since I was about 6 years old, taught me the true meaning of putting your own oxygen mask on first. My dog and I

Some personal and some voluntary roles I am taking a short break from (particularly those in the South West). This also means no more photos of my best friend #PoppyDog as I have had to leave her in Somerset for the time being. 

I will always want to make a difference, and this will continue – I hold onto my social identity as portrayed by twitter as it reminds me of the changes I have made as an individual, the memories and the continuous progress. One of my proudest moments this year being, the utter privilege to speak at the HCA Forum in March – seeing just how much of a role there is to improve young adult experience. But also looking at my standing – I stood to give that presentation. This is the first time I have ever managed to deliver a presentation in standing and seeing that photo make me proud – beyond proud. It is an example of the hours that I have had to put into my continuing neuro rehabilitation. The aspects that get me there may not always be shown the photos shown of #NHS1000miles potentially don’t show, the grazed knees, the crawling I still use to navigate the rough terrain on cliffs, the bumshuffling to get down 100s of steps nor the handhold/catching I still need at certain points. I know the effort it takes for me to get there and that is the story I hold in my heart as a reminder, but my social identity that I created via twitter is there for me to remember and celebrate with you the achievements whilst I take time to reflect on the harder moments.

 The moment that will further carve my social identity links to this very special week of #NHS70, it’s a special and means more a lot to me. I am invited for the NHS70 Westminster Abbey service that I am beyond privileged to be able to attend. I am putting in place protective factors, but this upcoming day is special – it is a pinnacle moment for me – something that in months and years to come I can look back at as is stored in my social identity. The identity I feel privileged to share with you.

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

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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).

The end of 2017 and accomplishment of pacing my activities today…

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So it is nearing the end of 2017. Usually to me the transition between years makes no difference to me. This time, it is different. So much has happened for me in 2017 that is good and bad but either way has allowed me to gain understanding, confidence and enabled me to actively promote my wellbeing – 2017 has transformed my life. Everything that has happened has played its part for a reason, and I finally think I understand and feel capable to self care and self manage my health and wellbeing.

Tonight, as the last day of the year, my family are out bowling and celebrating the New Year. Mother and I have been busy all day and together we supported my step-nan through the final hours of her end of life care in the nursing home. I came home and realized just how physically and emotionally exhausted I was… I wanted to rest but struggled to admit it. I  What was significant was that I was able to reflect on the year and say ‘actually, I can’t join you tonight – I need some rest.’ That statement is horrible to say as I always want to join in however I am so proud that I stuck with it. Today’s achievement means a lot, I am leaving 2017 knowing that I am capable of recognizing my limits and altering my activities. My whole life operates through pacing but it can be tough as often my  mind wants to do more and I have to accept I can’t do everything and I must prioritise.

It’s the first time I have felt that I care enough about my body to value it and respect it, it means I can go into 2018 on a blank slate and not in recovery mode. I know I am not superwoman but that is ok – I would rather reduce my activities so that I have time to focus on the aspects that matter to me.