I am a (just-turned) 19 year old Scottish girl with OCD, depression and Autism Spectrum Disorder and late last year I was diagnosed with Functional Neurological Disorder. This is my journey so far:
~~I feel it is relevant to incorporate my life as a whole to get a clearer picture of my situation and so I’ve included the context and other conditions which I have.~~
It all started when I was a couple months into my first ever job having just left high school. This was a big change for me and it wasn’t easy switching from life as a high school student with teachers and pupil support groups to being a full-time employed young adult on her gap year.
My head was deeply unsure of all the nuances of being an employee rather than a student even though many of the same principles applied such as, show respect to whoever is in charge, get your work done e.c.t.
It wasn’t easy – that’s for sure – but even through the confusion, learning and problems there was one thing that was more promedant than anything else: hope.
After being at the mercy of my OCD and subsequent depression for as long as I could remember; After still coming to terms with my Autism diagnosis a few years ago and all the mixed emotions that it brought; After struggling through failed friendships and sadness there was light at the end of the tunnel.
I was doing a proper job. I was a waitress and a damn good one at that, and despite my continued issues with communication at times and trouble turning the ‘off switch’ in my head after every shift – I could see a clear and optimistic future.
Then came the symptoms.
As one does when I started feeling this growing leg weakness, I attributed it to one too many long shifts at work where I’d had to carry too many plates or whatnot. Although as the days turned into weeks, this explanation was becoming less and less believable as the walks I used to go on became far harder than ever before with me having to take frequent breaks to give my legs a chance to cope. Then after a few more steps I’d have to stop again and give my legs a chance to cope again.
My voice was starting to slur as I spoke in my work with every syllable becoming harder and harder to annunciate clearly. My neck was starting to feel unusually weak and my legs were not improving.
This all resulted in an ill-fated trip to Edinburgh where my Dad had to practically drag me across Princes Street as my legs were so weak I could barely move ( Sorry about that Dad ). I swiftly made a visit to the hospital after that.
Before arriving at the hospital I had to obviously call ahead and the doctor on the phone told me he thought that I could have Spinal Steniosis. (An assessment my future neuro-physiotherapist would react with disbelief at the mention of ) When I got to the hospital the doctor did some quick reflex tests and checked my spine for tumours.
He found no issue with my reflexes and concluded that I had not got a tumour in my spine or am afflicted with Spinal Steniosis. The doctor tried to do breathing excersises for ‘anxiety’ as he had supposedly concluded that it was likely a physiological issue. I was having none of this and told him to stop with his breathing excersises and that I am telling the truth. ( As many of you may have guessed from reading my blog; I do not hold back on politely defending myself even in the face of authority.) In short, the doctor told me I had to go to my local GP for tests.
Getting in contact with ones local GP during a global pandemic is not an easy thing to do. Things were getting worse as I now had to take sick leave from my work due to my situation. I felt like I had zero answers and a million and one questions. Frustration is the word that sums up this point in my journey ( one that is still prevalent today ) and became a constant in my life that was now vastly different than it had been only months before. I was now not working, not able to walk to the shops ( something I loved doing and had done at least three times a week for the past six years ) and left feeling useless as I watched the world go by without me in it. A receptionist from the doctors told me that I had an appointment with the GP in two weeks time. I asked her what I was supposed to do during that time: Should I stay in bed to rest? Should I try and continue as normal despite the overwhelming fatigue and weakness? To which she told me to wait for my appointment to ask what to do in the weeks leading up to my appointment. Needless to say I was less than impressed with this statement.
My GP informed me at my appointment that he was unsure of what was causing my symptoms and felt ‘uncomfortable giving advice for how to manage the symptoms’ when he didn’t know what was causing them. He then arranged for me to get some blood tests.
Another problem I was now facing was not only a struggle when it came to speaking without slurring, now I was struggling to eat food. It wasn’t the swallowing that was the problem but the difficulty chewing that was exhausting me upon every meal. Something to know about what it is like to take forever to chew with your mouth and jaw getting more and more tired and weak, is that not only are you hungry and unable to quickly ease your hunger, but food doesn’t taste as nice once it’s been in your mouth for an extended period of time.
After a while, that felt like forever, with my body growing weaker, I got a blood test from my local GP and a few days later I got a call saying that my Vitamin B12 count was very low and that I needed to come into the day hospital to recieve B12 injections.
To say I felt releaved would be an understatement to say the least. I was going to get better sooner rather than later. I may even be ready to go back to work within a few months! I learned everything there is to know about Vitamin B12 Deficency and received my six, very sore injections over a course of about eight or nine days.
Initially after getting the injections my neck was better and I felt like I had more energy. I was still weak and unable to do even half of the things I used to be able to do but I was improved nonetheless. I began also taking oral Vitamin B12 spray everyday and eating even more meats and fruits.
Of course a question formed in my head: How was my vitamin B12 count so low? Sure, being a teenager my diet hasn’t always been perfect to say the least, but never did I go without the foods that contain vitamin B12 for more than a few days at a time. Even more so, when I had started my job my diet had improved substantially. I was now eating breakfast (usually a sausage and egg McMuffin from McDonald’s, not the most healthy of choices for sure but it got me through the breakfast shift) and I would have a substantial lunch that comprised of seafood, rice dishes or pastas. Truth be told I’d gained a small amount of weight and was grateful for it too, as it enabled me to do my job easier. So why was it that during the time of my life where I’d arguably been eating the most foods containing the vitamin was I now so deficient in it that I was loosing control of my body?
Throughout this long process of diagnosis’ and a lack of answers I’ve found, perhaps unfairly, that I’ve had more success in my own medical ability than those who are trained medical practitioners. That sounds egotistical, I’m aware, but my research skills had proven more informative than (at least at this point) than any doctor had been. Of course one should not drive oneself insane with medical research as you could look up the symptoms of a cold and the internet would inform you that your suffering from Ebola, but responsible research has helped me. I’ve had to advocate for myself more than ever before. I’ve called and recalled when there has been no communication and I’ve protested that there is something wrong even in the face of those who may have dismissed the symptoms of nothing more than an anxious, autistic girl.
After my last B12 injection and what felt like too long of a wait, I once again called up the hospital to ask about what the results of the blood test we had done to check to see if the underlying cause of my vitamin B12 being so low was indeed something like Pernicious Anaemia. For better or for worse I was told that there was nothing causing my body to not absorb vitamin B12 properly.
After being left with little to no advice once again and little to no answers on how to get better I soon called my GP again and explained to him that as I’ve allegedly not got anything wrong with the absorption of my vitamin B12 and I’ve not only been receiving B12 injections but also taking oral sprays, there should be no reason why I’m not on my way to a recovery. My GP told me he agreed with me and then suggested I may have Functional Neurological Disorder. I was then referred to the hospital for Neuro-physiotherapy. His thought was that the Vitamin B12 deficiency had caused my symptoms and my nervous system has gotten mixed up with how to send and receive signals to my body even when I’m no longer deficient in Vitamin B12
When my GP gave me this diagnosis I was apprehensive to say the least. Grateful sure, but still nervous. After originally being informed over the phone that I likely had Spinal Stenosis and then a vitamin B12 absorption problem – this new diagnosis (which contained many of the same symptoms as the previous two have famously been associated with) it would have been easy to feel like this was yet another stab in the dark from medical professionals who were overwhelmed with patients and desperate for this plucky teenager to leave them alone. After all I had not had any MRI or further blood tests to confirm that my bloods had not been a false negative as is allegedly common.
Over the Christmas holidays the practicality of normal life was proving harder as well. On Christmas Eve the weakness in my legs caused me to fall whilst going down the stairs and hit the top of my head against the wall. Another incident occurred where my legs were so exhausted that as I sat down on my sofa, the relief in my legs at having to no longer support my body caused me to practically fall into the sofa smacking the back of my head against the wall.
I was more upset than I care to admit about having to potentially wait three months to see someone for physiotherapy. Nevertheless thanks to some wonderful secretary’s in the physiotherapy department and some luck, I got seen quicker than expected. My neuro-physiotherapist is lovely and after some advice and the answering of many of my questions – told me that with some hard work and dedication she was confident that I would be able to walk to my local shops and back in the next month.
When she said this I doubled back and said ‘I know it all depends…-“ but she gently stopped me and informed me she was confident of this. I was in two-minds about this: one half of me was the personification of the “Don’t Give Me Hope” Hawkeye meme and the other was pure relief, determination and joy.
Over the next fortnight, before my next neuro-physiotherapist appointment, I created a daily plan based on the advice and tips given to me. My plan consisted of a game of pool everyday with my Mum, throwing and catching a ball, going with my Dad to pick up my brother from school in the car and various other exercises.
By the end of the second week of following the instructions set by myself and the physiotherapist, I had now been able to cook my family a meal, walk up the hill to pick my little brother up from the school gate and had generally more energy. I was still nowhere near myself but I had undeniably made some improvements. The weakness was still dominant but my strength was somewhat increasing.
As the appointment came about my physiotherapist was delighted with my progress. She told me that I’d improved even more than she’d hoped and that she suspected I’d only need one more appointment with her after this one. I felt hugely proud of myself and relieved and continued documenting my daily tasks in a notepad hidden under my piles of papers on my desk. Things were doing somewhat better and my friend’s mother even pointed out that I seemed better.
Then came my 19th birthday.
The day before I was going to see The Batman in the cinemas for my birthday, I made the fatal mistake of taking it easy. I wasn’t lying in bed all day or anything – I’d gotten dressed, brushed my hair and was pottering about the house. I had done some physiotherapy work but had decided to take the day off to ‘conserve energy’ since I was going to the cinema the following day.
However the next day I could barely walk to the car and when I did eventually get there I felt deeply weak. Walking up the steps to my pre-booked seats was almost impossible and I only just about managed without embarrassing myself in front of the cinema.
At my special birthday dinner I had barley started my meal whilst my Father and sister were already completely finished eating. When I managed to finish eating, I almost immediately vomited the meal right back up onto the plate. It was a strange experience.
After my birthday things went back to how they were before meeting with my physiotherapist; my neck was now so weak that when I sat down on a chair I got whiplash as my neck had been in such an angle as my legs gave way that it caused me pain.
Not too many days ago it became obvious to my parents that climbing up the stairs and (especially) climbing up to my top bunk was becoming too much of a challenge for me and they decided I needed to move downstairs.
I was devastated by this at first. Not only does my Autism not like change but it also felt like I was loosing another part of my normalcy to FND.
However my Mum, sister and my sister’s friend all spent hours of the same day clearing out the spare room and filling it with beautiful items from my bedroom that had become lost and unappreciated in the FND, depressed mess that my old bedroom had become. Every day the room got more and more messy with tasks as simple as taking my dirty laundry downstairs a struggle. Now I am closer to the laundry room and needn’t trek up the stairs I’d hit my head on last Christmas.
When I walked into my new downstairs bedroom I felt deeply unsettled as I was now ‘living in a different place’ but at the same time the effort my family had gone to and the few special belongings that had been salvaged from my old room before I had moved officially downstairs made me feel very emotional.
They had done a brilliant job and my new room is beautiful.
Of course my old friend OCD has showed up informing me that I’m going to ‘ruin my new room’ and combined with the stress of everything else in my life at the moment, this is unpleasant but ultimately I have to ignore that voice. I still need help to carry many of my belongings from my old room to my new room but the thought of that is no longer as scary as it was initially.
However my life feels like it is now on pause. My GP told me during that intiital phone call when FND was first brought up that ‘many people with FND find that their world has become small, make sure your world stays big’, (*paraphrase*) something that is becoming more and more valid of a warning as the weeks go by.
It would be a lie to say I’m not heartbroken by all of this. I am very grateful for having a great family, amazing friends and a wonderful physiotherapist.
An interesting point I’ve been thinking about over the last few days is how being in an OCD, depression is a similar place of darkness as a FND related one. The only difference being that I was beating the former and had far more experience with that monster than the one I’m currently facing.
My parents have been worried I’ve ‘given up’ or have lost motivation for myself to get better but this is simply not the case. I wish I could give up in many ways. The trouble is I can’t give up because I need to be able to walk to the bathroom, eat food and shower. There is no other option than to keep going.
I had my third appointment with my physiotherapist today and I spoke candidly in more detail about the struggles I’ve been facing. I went over my symptoms, the decline in my independence and my fears. I cried and was listened too in turn. She has told me that she is going to consult the neurologist over what to do next. We both agree that I have almost certainly got FND but in order to be sure I don’t have something as well as FND which is preventing some of my recovery.
I now have to wait for a call back and then make a plan with my neurologist and physiotherapist on what I’m going to do next. There are questions about my future in terms of practicality. My parents cannot be my carers and I will do
Every single day my goal of being a journalist, living independently and happily seems even more unlikely. As my friends move on with their lives and as I watch my siblings go to local events – I’m aware of being stuck on the sidelines. I used to love going to a local dance group ( I was the youngest person there by at least a decade which was nice and took the pressure off trying to be accepted ) and enjoyed it immensely. I haven’t been back since before I started work. My plan was to get settled in my new employment and then go back on a Friday night.
But there is no more work and there is also no more dance. All there is, is my resolve to get back to doing both.