Abbie: Invisible Friends
My name is Abbie, I am almost 24 years old and I would like to share my story with you all.
I was a relatively well child but did suffer with some intense gastro issues, constant water infections and I experienced a lot of injuries in my joints. I have been performing since a very young age and when I turned 18, I decided to audition for drama school to complete my professional training, with the intention to moving to London upon graduation and enter into the industry I have always been so passionate about.
It was in one of my dance sessions at Drama school when I blackout for the first time. I was also flushed from head to toe and had a very violent tremor with some seizure activity. For months I was being told it was my hormones, a nasty virus, or that I might benefit from having some therapy to see if this would stop my body from behaving like this.
Eventually I became so sick and after having 8 epsiodes within the space of a few hours, I was rushed to hospital where I spent 10 days having tests. We were told this could be lukemia due to the profound brusing all over my body, the blood levels showing how low my immunity had become and how weak and fragile my body was. Finally, I was diagnosed with PoTS and sent home on Fludrocortisione. My Neurologist at the time advised me to withdraw from my training to make sure PoTS could become more stable. There was NO way on this earth I was ever going to give up on my future, and so for 4 very hard and challenging years, I pushed my body way beyond it’s limits and continued dancing 9 hours a day Monday to Friday whilst working all weekend to fund living away from home.
After being diagnosed, I knew that there still wasn't something right with my body. My Neurologist could see no reason for me to be experiencing symptoms such as tremor with seizure activity, intense head aches, fluctuating blood pressure and being constantly fatigued. Neither could he understand why I was also explaining that I was having really bas issues with some of my bodily functions either. He admitted himself that he did not know enough about the condition to know how to treat me and so took me off all my medication and advised my GP to put me on the waiting list for counselling.
Because my GP is absolutely wonderful, she referred me to see Professor Mathias on the NHS where he confirmed a definite diagnosis of PoTS and also thought it was likely I could have Ehlers-Danlos Syndrome and Mast Cell issues on top of PoTS. Furthermore, due to some blood results and rapidly fluctuating blood pressure, he wondered about weather I could have Hyper adrenergic PoTS.
Eventually I was assessed by a rheumatologist who confirmed a diagnosis of EDS type 3 and had me seen at the clinic in Sheffield to rule out any other type. I then went on to see Mr Khullar with regards to my urological symptom's. He diagnosed a severe intracellular Ecoli infection in my bladder and pelvic and bladder spasms due to the EDs. I have a lot of IV antibiotic treatment to manage the infection and I have an operation twice a year to inject Botox into the muscles to relax them.
I was initially assessed by the team at St Barts with regards to my GI issues but at the time things weren’t to bad and the only test that came back to confirm that something was wrong was the endoscopy which showed severe gastritis and inflammation on the stomach wall.
My body began to get weaker and weaker and eventually I had no choice but to purchase a wheelchair due to becoming to unwell to walk.
After a change in medications, regular procedures to manage pain and antibiotic treatment, I reached stability and sold my chair. I applied for an access to paediatric nursing course and got accepted. I was due to start in September 2014.
In April, my gastro issues became a lot worse very rapidly and eventually I wasn't even able to tolerate a fortisip without being sick. I had lost 4 stone in 4 months and became very malnourished and dehydrated. Professor Aziz asked his consultant to see me closer to home due to how unstable I had become and he had me admitted to trial NG feeds. Things weren’t great but the sickness had become less and I had a lot more energy.
In November 2014, I decided to have the NG tube removed in an attempt to get my body to learn to accept food again and so I went back onto nutritional shakes. Since making that decision, I have become as sick as I was before and I am now vomiting again on a regular basis. Enteral feeding may have to be restarted again because my body simply wont allow me to to provide it with nutrition in a “normal" way.
I recently got the results back fro my autonomic tests and unfortunately my PoTS has been recognised as being more severe than anticipated and it has been confirmed that it is extremely likely that I do have hyper PoTS. One result came back suggestive of autonomic neuropathy but at this point in time, we cannot put a definite answer to this and more testing will need to be done, once my body is stronger.
Last year, I found myself in a very dark place. I was lonely and I wanted my life to end. I couldn't believe how quickly I had become so sick. I yet again had to withdraw from my college placement and saw myself back in a wheelchair and completely bedbound on the days when my body was just to weak to even allow me to sit up. With support from some amazing friends and family, I found the courage to accept my illness, look at my life as it is now and try and attempt to work around the conditions I live with and how they affect my body.
I entered a national singing competition not to long ago and made it into the grand final out of 10,000 other hopefuls! I was so uneasy at first about singing in a wheelchair but as soon as the music started I got lost into the magical world where I love being and whilst I didn't win, I sure made my family proud and I lived my DREAM.
I have now set up a vocal group called “The invisible friends" and we will perform at events throughout the year to raise awareness of invisible illness. Each year we will support a different charity that helps young people living in the "invisible world”. Some of the members are completely healthy whilst the rest are invisibly very sick. The idea of putting together a group which mixes the healthy with the unhealthy is to try and make society realise that just because somebody looks just as well as their friend, or their sister, doesn't mean that on the inside, they are! This group will also be a way of making young people like myself feel as though they have a purpose to keep fighting and it will allow them something positive to focus on. It will also allow them to meet others who can actually say "I do understand" whilst receiving support and sharing some happier and more positive moments with their new "healthy friends" too
Our first performance will be an event in July and I have no doubt that my new "mission" will continue to grow and become something so magical that could even perhaps save some lives!
We are in the process of “recruiting” some more “invisible” members to join the group. There is no age limit but most are currently aged between 13-24. All information about “The invisible friends" can be found on their Facebook Page
Life is a blessing and at times it can meet us with some life changing challenges. But everybody has a reason to live and a reason to be happy. I have learnt that accepting my diagnosis, and taking it upon myself to have weekly talking therapy has changed my mind from being so scarily negative to completely positive and hopeful for my future!