Celebrating One Year Of Changing Lives
Discovering that you have Epilepsy can be one of the most challenging and distressing moments an individual has to experience in life. You may feel frightening, nervous, worried, panic stricken or even hatred.
Its critical to keep in mind, these feelings you are experiencing are common of a person with an Epilepsy diagnosis – this is OK though and a perfectly natural element of confronting a burden that can be seriously life altering.
It is Important to state Epilepsy doesn’t have to prohibit you living a happy and fulfilling life, with the appropriate treatment and support, it is extremely possible to live a life of positivity, satisfaction, happiness and enjoyment.
There are a lot of misconceptions about what it means to be living with Epilepsy. Fundamentally , everyone’s lives are different, and how you manage your diagnosis and move forward will vary from person to person.
Epilepsy is a disease just as cancer and HIV is a disease. Let’s all work together to stop the stigma and discrimination so those who are living with Epilepsy behind closed doors like i was will be able to move on.
I was diagnosed with tonic clonic Epilepsy at the age of twenty one, a lifetime ago now, well so it feels. Lol
I was hospitalised for several days, while the consultants performed all the essential tests. I certainly didn’t know what to expect. My mind went blank and though I tried to remain strong, brave and confident inside, on the outside i was screaming and dealing with extremely deep dark emotions.
Negative thoughts were circulated all around my head. I wasn’t ready to be taken onto the next life yet, i was only twenty one, although i was withdrawn and alone, didn’t know how to deal with my situation.
I was ashamed to be open about my condition due to fear of embarrassment and humiliation.
I had to deal with a lifetime of anti epileptic medication that was inducing mood swings, light headedness, fatigue, dizziness and a rash, to name just a few. Most times the medications were actually more debilitating than the actual seizure activity.
It’s disheartening and humiliating but on the positive side in the past twelve months, thanks to Epilepsy Connections Health and Well Being Futures Programme, i have learned that self-acceptance is key, however social acceptance requires huge efforts especially in the fight against stigma, which we often have to cope with on a daily basis, but, why should we?
The past twelve months have really past so quickly, where does time really go?. Reflecting back on the past year i am generally filled with emotions as my life has changed immensely for the better.
I am not that young man anymore who was mopping about his flat scared and embarrassed to leave the house in the event of a seizure occurring, awaiting the next episode and dislocated his shoulder.
I was fortunate and blessed to have been recommended for the programme from Jim Thompson (Ayrshire and Arran Fieldworker) and Sam Whitmore (Training and Development Manager, Epilepsy Connections), and i am delighted that I haven’t looked back since.
I am exceptional and remarkably proud of my positive and successful outcomes and the influence and advantages that Futures has had on my life and for engaging in friendships that I definitely know will be friends and a support network for life.
I have discovered from my own futures life experiences that I have a passion, enthusiasm and determination to help support individuals living with epilepsy. Since graduating from the programme, i am privileged and honoured to do just that with Epilepsy Connections, i am absolutely embracing all opportunities, which i am very appreciative for.
I have successfully completed the befriending training programme with the organisation, it was captivating and encouraging. The support during the programme which continues throughout my volunteering experience with the organisation is just tremendous. I am a fully trained befriender now, i meet my match every two weeks, i am so proud and thrilled with his progression and achievements, he is so inspirational, I am really overwhelmed that Epilepsy Connections has had an constructive influence on his life.
I have realised that Epilepsy Connections are one huge happy family and i am honoured and delighted to be apart of the volunteers team now . I have learnt so much, i have met new friends, and have a better understanding of Epilepsy and Mental Health.
Every single day is very different as a befriender but extremely rewarding and beneficial at the same time. Making such a significant difference to people’s lives is exceptionally important to me and i love supporting individuals to enable them to live independently. We support people to enjoy a very active social life and we all come together to discuss future plans, and a wide range of opportunities for individuals, it’s inspiring and extremely exciting.
Supporting people to find their independence is by far the the most positive and rewarding experience ever. Seeing people’s faces light up when you just take the opportunity to engage in a conversation with them is the most meaningful part of the experience for me, I love it so much.
Volunteering with Epilepsy Connections is truly positive and life changing.
I have certainly grown as a person during Futures, learning new skills and learning a lot about myself in the process .
It is so heart rending to distinguish the person i am now, from the individual i was a year ago.
In the beginning i was so afraid, anxious, petrified and upset. I needed assistance to walk through the door, but that’s ok. I am a totally different person now, that’s amazing and I feel great. I don’t even get anxious anymore.
Futures has been completely life changing for myself. I hope it has the same impact on group three when they will be joining us on Tuesday 6 November.