My Social Identity through Twitter

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.

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.

 

 

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

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.