Diagnosis Journey

The year that changed my life

In this final post about my diagnosis journey, I talk about how my whole life changed for the better after being admitted to Coventry hospital for four months. Although it defiantly was not easy and I had to face up to the truths I rather wanted to avoid. This year would change my life as I knew it.

Breaking point

I got to the point where everything was too much to bear, the seizures and the chronic migraines controlled my life. I had got to the point where my mental health was at a serious point and I just couldn’t take anymore. My consultant told me to take a trip to A&E in Coventry where I was admitted straight away. I was defiantly in a bad way but my attitude towards doctors was at its worst, I couldn’t tell anymore whether they wanted to help or just give me the same responses I had for years.I was admitted by my neurologist to the neurology ward for testing. The first few days were challenging I was completely reliant on my family and they were miles away, not sleeping for nights and feeling scared at the response I would receive if I experienced the seizures. 

 

The one choice that would change my life

A gut feeling told me it doesn’t matter what this diagnosis is, I desperately need help. I was given a choice and I had to take it, say yes to physio or be discharged, it took some convincing from my family. I remember being taken to one side by the physio as the conversation was getting tense with me, my family and the consultant, I honestly do not think I would have stayed without his understanding of FND and his patient, empathetic nature. He really knew how to explain the condition and help me towards taking my few steps in acceptance. My consultant, wanted to help, if I’m honest we had a difficult time agreeing on things and he just did not have the best way of explaining FND, but he meant well. I had been given a lot of bad impressions and information in the past about functional symptoms it was not surprising I struggled to understand or believe my consultant really wanted to help.  A lot of doctors will describe it as psychogenic or say your symptoms are fake. I’ve had a few doctors tell me I have functional symptoms, but the true reason I always said are you sure? or questioned them is because of the attitude around the condition and the way they explain it. If you have FND you will get me 100 per cent and if you’ve been told you have it and later are diagnosed with another condition you might even feel it’s not real. A functional disorder should never be a diagnosis because they can’t find something, it has a distinctive set of symptoms yes they may be different in each individual but all causes should be ruled out and the diagnosis considered if it fits correctly. More on this in another post.

You can walk and explaining FND

Ok, I get the theory here but imagine being told you don’t need to use a wheelchair, come on how does that make you feel when you know your own body and wouldn’t use one if you didn’t need to. The theory I believe doctors use is to tell your brain that your nervous system is working and you can walk, its suppose to trigger the brain into believing everything is working. A flaw in this plan is you can tell my brain all you like but my body still alerts me something is wrong, pain, fatigue, dizziness, I still feel it and you can tell me to the earth ends it will not change it. I do believe how doctors explain the condition is key to helping the patient and the wrong words can really hurt and traumatise individuals.

‘My brain is lying to me’ is a very unscientific way I explain FND and there is nothing more frustrating and enraging than that to live with. In fairness, this condition has a long way to go, to fully understand what is actually happening in the brain with FND. Research funding is a big problem and the lack of advice for doctors leads to a lot of misunderstanding in the neurology community.

 

The stigma surrounding functional neurological disorder is very high, even amongst the medical community, the lines below are to just clarify the fact that functional patients do not fake their symptoms and have no choice or control over them.

I can not control what my brain is doing  or the fact my signals are not firing correctly

Functional neurological disorder is not a choice

 I accepted the diagnosis and I made the choice to do the physio regardless but my pain and fatigue battled back with every step, I had de-conditioned terribly, but the pain was to remain in my joints and muscles when I walk, it still does today. It is important to understand positive reinforcement will not fix FND, honestly, functional neurological disorder wouldn’t be the second most common neurological condition in the world and as disabling as MS if it was that simple. Trust me I’m a lot better, don’t think nothing can help because it surely can get better. I’ve heard a lot of people recover completely this is dependant on symptoms and length taken to diagnose. For me, I’m still recovering and will be in the near future and it certainly is a chronic illness that affects peoples daily lives.

Belief and taking physio one step at a time

 I remember meeting the physio team, they were so different than most I had encountered, Oliver had training in dealing and working with functional disorders this was the best news I could have hoped for because it truly told me that they believed me. One step at a time is how I coped,  just standing up took days, each step was tormenting and exhausting as the next. It was weeks of agonising pain, dizziness, fatigue and migraines to get to a point of walking a few steps. I built up strength with exercises and various balance exercises due to the vestibular problems. When I stopped the various exercises or steps, I felt nauseous and was spinning for hours, I got through that many migraine tablets as a result of moving, in fact, I had triptans every day for a whole month. It fair to say it was extremely painful but I got to the point where a few steps were easy and I built from there. They even had a kitchen on the stroke ward for rehabilitation purposes, and I built up doing basic tasks for myself. 

Psychology in a different light and facing myself

The therapy was so different, I was referred to Christian a neuropsychologist, first meeting him he was so nice, regardless of my ranting at past experiences and accounts of my bad experiences with psychologists he would never give up hope of helping me. Each week he would turn up and sit with me for as long as it would take. I truly felt a trust there and I opened up to him about everything id experienced over the years, it’s amazing to see the difference therapy every week for over three months can really do especially when the psychologist understand the diagnosis, for the first time in my life I felt heard. I had various CBT and mindfulness therapy and I took my part in implementing every step, it was time for me to face my emotions, thoughts and feelings, it was painful but necessary, if I wanted to recover from the trauma. Facing myself was beyond difficult, facing my own denial and inner demons. I realised the detrimental effect of my mind on my body. It was frightening and scary to go so deep into my mind but I fort it and faced it with a strength I didn’t know I had. 

Accessing funding for FND

My consultant specialised in functional neurological disorder and was serious about its prevalence in the neurology community. It was fair to say that not all of the neurology department agreed and he had to fight for my funding for rehabilitation. To date, I still do not know what they truly had to do to get my place, but I can’t appreciate it enough. My consultant told me I showed hope and promise from the beginning, the improvement I made in a short space of time was worth fighting for, the chance to show that a multidisciplinary team can make a remarkable difference to an FND patient. I knew at the end of my stay that I was going to be used as a case study which was very exciting, I’ve never read it but somehow I think that’s for the best. I just wish that my case will help to fight for more funding for those with FND. 

Seeing the light and the future ahead

The world was at my feet as I neared 21 in October, I began to finally see that my future was bright. I celebrated my 21st in Coventry at a local venue. Nothing can ever take away the moments my brothers saw me walking into that hall, from where I had been in August. The moment my dad helped me dance on that floor from being wheelchair-bound, and the people I had shared my journey within the hospital celebrating with me. I may have spent the next week recovering from the ordeal but no amount of pain could take away those precious moments.

Seeing the future ahead of me was scary, the first week of December I was discharged. I had a slight meltdown before I left, after all, id been there four months and before that my life had been very different. I was worried about not having the safety of the hospital. I had 24-hour support and that was all about to stop. My team had tried hard to get support through my local council and services but nothing came through, the letter was detailed to the GMC for funding for further physio support but that was just not going to happen. I was lucky in my area that local funding was available for psychology treatment for FND and I was on a waiting list, it was about three months before my first appointment. I had a difficult time adjusting and the stress got hold of me but I was walking more and adjusting to doing more for myself at home.

That concludes this last part of my diagnosis journey, I will be doing a detailed post outlining the basis for multidisciplinary teams as a treatment for FND and a more detailed outlook, including more detail about physio and psychology treatment. I also plan to delve into my first year after being discharged, the challenges and experience of outpatient psychology treatment for FND.

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