Following on from my previous post on my diagnosis journey this is the point things really changed for me. It was clear a lot was wrong but not to the extent I could have imagined. Summing up in a short post with years of history is challenging but it offers an insight to get to know me better. Our stories are so important to share with a community its how we relate to each other and offer insight to help others suffering from the same conditions.
The year that changed my life for the worse
The two years from when I turned 18 were the most challenging and life-destroying. I never imagined a life in a wheelchair or a life dependant on others for basics like washing. It felt alien to me and the toll it took left me completely in denial and hiding in my 19th year. That year I barely recall and I never speak of being 19. That year I recall the constant A&E visits and the experiences with neurology in my local hospital, alongside a gastro consultant. So confused by everything that was taking place, I hid away from the world, the overwhelm of symptoms consumed that year and the struggles faced with consultants made everything so much harder to bear. From the spells of dizziness, dissertation, palpitations, blackouts, nerve pain, insomnia to the extreme I couldn’t sleep, losing the ability to walk also.
The medical profession left me in a circle of despair and pain, the mental torture of everything shaped my whole life, its the reason I can barely recall the moments of that year. My local hospital and doctors were rude and insulting. Several experiences of A&E I rather not recall because of the sheer pain they bring forward, some words I could use are ‘im not sick’, ‘stop coming to A&E” you can walk’, ‘we’ve done all the tests’ ‘your just depressed’ ‘your well known here’ and every time they read the notes from other doctors in the past they would change drastically and all of a sudden it would go from tests and referrals to discharge with no answers or pain relief.
Loosing a year and gaining a qualification
Focus kept me sane, I was nowhere near as good at education between the brain fog and confusion but I passed the access course, then it felt like I hadn’t gained anything. It didn’t matter as much as it used to, at that age your told education is everything but all I cared about was my health. Id spent a year suffering from symptoms with no diagnosis. I was still walking to some extent for short distances but I can’t even explain the mental anguish it kept me awake all night, I was scared of truly feeling my body that’s everything I remember.
More tests, travelling and turning 20
It must have been January and I had enough of no diagnosis, so I turned to the private sector with the help of my family. I picked a specialist in seizures at queens square in London after I had a possible trace of seizure activity in my brain and was experiencing strange episodes, it surely explained some of the strange sensations and events. In February I traveled to London on a double appointment as I was referred to kings college hospital for heart testing with a suspect of POTS. I awaited admittance to a unit that dealt with seizures but first I needed the very difficult funding.
Within a few months, I had frequent trips to London, each one difficult as I dealt with vestibular migraines* not diagnosed at this point, also frequent seizures. I decided to go private with the cardiologist as I was told id wait a few months for the test results, after the appointment in March/April time I felt more confused as my tilt test was a false/positive result as it appeared it could have been a degenerative form, eventually confirmed as so * My experience here with the king’s hospital was good to some respects, they out ruled a lot of possibilities but it was obvious there was more going on. I took a drastic step and made my way down for a second appointment privately with the cardiologist, it ended terribly as I was; left hospitalized from seizures, after my consultant witnessed an episode while in hospital, he affirmed this wasn’t his area of expertise, this was the last time I saw him.
Immediately the consultant that was dealing with the seizure disorder got me an emergency stay at the center for seizures, I was sent there for a week and some results showed the episodes to be non-epileptic seizures and other symptoms related to FND. This experience was not what I expected because despite this they didn’t do anything they just sent me a neuro-psychologist who was incredibly rude and dismissive, I remember the words you will never find anything wrong with you’ what the hell! Is this really how they deal with functional problems it’s no wonder there are thousands of people left undiagnosed and struggling. The thing is when a consultant promises they will find out what’s going on and help me get better, it is painful when they don’t, fair enough he was an epilepsy consultant but as soon as that was ruled out all of a sudden it wasn’t serious enough to deal with.
Worsning symptoms, more consultants and few answers
The next few months just got worse, I saw another POTS consultant in Warwickshire who redid the tilt test himself and saw the signs of POTS, it was decided in the end I was suffering from a deconditioning form it left more questions on what exactly had caused that in the first place. I remember the long days of seizures and terrible headaches that the local hospital wouldn’t deal with, I eventually sort help from a headache specialist in the hope of some relief from the agony. It was my worse time of year in the winter, it appeared I had recurring migraines daily including a new type, I had a few appointments into the new year with a neurologist in Coventry, this was going to be a turning point for me one I truly couldn’t have ever expected.
2018 A year of change
The specialist picked up I had vestibular migraines and hemicrania to which I commended with medications. This was the first consultant that took my pain seriously and he booked me in for a procedure for an optical nerve block, following this the headaches worsened and id hit rock bottom. I couldn’t stand to be alive in the agony and my mental decline was severe. The final straw was when I was admitted to my local A&E and they refused any pain relief. I rang my consultant and he requested my admittance to A&E, I was experiencing paralysis of my arm and speech with the headaches on the way down. This year saw my admittance to Coventry hospital that would turn into a four-month stay and some really difficult physio and mental health recovery. It truly was a turning point.
“The only way to make sense of change is to plunge in to it, move with it and join the dance” ~Alan watts
The Coventry year as I call it was so life-changing that I’m going to cover it in part 3 in more detail. Some of these words have truly been painful, bringing back a lot of emotion and pain, it’s hard to display those years. I rather erase them but I wouldn’t be who I am today without those experiences its a small amount of comfort I can find from those times of darkness.