One Story 

A snapshot of one life with FND

We received two letters from one member that said it all. He gave us permission to share them with you. We have copied them here unedited, other than taking out a few personal details. It rests here to give you a glimpse into one person's life.  It is quite long. If you want to skip past this page, that's ok. 

This writer touches on most of the points that our research identified. He is however, quite sympathetic to his medics. This family man has been living in a rest home for four and a half years. 

First Letter

Hey, 

Sorry been off grid for a bit as been having flare after flare and ultimately been disassociated a lot of that time. To be honest things are pretty average at the moment and mentally I am stretched pretty thin on the ground. Sure I get up each day if I can but there is no joy in it. Not sure where I am at treatment wise, though know I am tired. Tired of fighting this battle, tired of destroying my family and tired of trying to remember who I was, then living it all over again.

It’s the constant trying to put on an act, pretending everything’s okay when I know it’s not. At the moment feel like the kid with his fingers in the dyke and cracks are starting to appear. My worry is that it is my beautiful wife and daughters are the ones noticing and I know that I am not the husband and father they signed up for.

This is the often unseen, unwanted and down right hurtful part of FND , the collateral damage you do to your family and friends and this weighs heavy on your shoulders. To be fair there is not much of what we live with that isn’t a cunt. We deal with its consequences daily, seek medical intervention, use coping techniques and try just to survive. Though what happens to our loved ones that sit by our besides both figuratively and literally holding our hands, helping with treatments,  managing our house holds and a million other things. This part of FND needs special attention, personally I don’t give a paua's arse about what happens to me, however I do about my family and mates. It’s not fair that they probably suffer worse than I do even though they do not actually have FND. There is no support network for them, no councillors or medical specialists, no financial aid to cover expenses or their time, no one to offer guidance and advice, no one to help with stress both mental and physical and no one there to even offer the most basic of things, a shoulder to cry on.

Still that’s the reality of the illness we carry??? An illness that not many people or medical staff know about and if they do, rarely care about. Especially as it’s all in our heads right. Haha   I’ve seen those looks in peoples faces, people you once knew, work colleagues, sporting acquaintances, family and worst of all former mates. The look they give you when they see you in your wheelchair, often struggling mentally as this nightmare wracks your body. I’ve seen them cross the road or turn and walk in the other direction just so they don’t have to acknowledge you. I’ve seen them give you a dismissive wave, or only a hey as they walk past you, or drive away. Then things get even worse if by circumstances they get forced to communicate with you. Conversation if you can call it that, is often limited and what is said, very cliched. There is the standard “how’s things”? Polite but not really interested in your answer. Then a smattering of other information is exchanged mostly driven by you, while watching them squirm as they look for a way to disengage. Finally there’s the ubiquitous “well better get going, must come and have a decent catch up, beer or other no intentioned phrase”.

Occasionally though positive human nature shines through and an individual does genuinely seem interested. They ask the “WHAT, WHEN and HOW”? Which is sometimes the worst, what do you tell someone when you don’t really know how to answer the question yourself.  So you start trying anyway just hoping to be able to connect the dots for them in a lucid and forthcoming manner. Often though you just falter as you watch a film come over their eyes and ears. You sound hollow, the story disjointed and lacking vitality. You falter and invert yourself, as the spark of conversation gets blown out and your left looking at each other. The gulf between your reality and their understanding as vast as the wild windswept waters of Foveaux Strait. 

Every time this happens you die a bit inside, while not being fatal, it’s the death of a thousand cuts. Plus it hurts it really does, these are often people you care about and you are willing them to try and understand. Yet the story is too lengthy, to involved, to convoluted. It rattles on like a train on its tracks with no definitive start or foreseeable end.

I know this all because I have been there and got the fucken T-shirt. When I was me I worked ... It involved winning and running... contracts worth millions of dollars... I had come up old school, the hard way on the tools,  for thirty years I plied my trade and in that time had formed many close friendships. Not to mention a heap of other contacts. Looking at my old work phone now, I have over 600 contacts to remind me of my past four and a half years ago. Do you know how many of the six hundred that have been in touch and regularly contact me. It would be less than twenty……

It’s a lonely, lonely illness, especially as so much of it becomes trapped in your head, bouncing round like gorse covered ping pong ball. Hurting here, hurting you there, leaving you always tensed up waiting for the pain. I’ve tried many “plasters” but they never seem to last for long, falling off when you need them the most.

I don’t blame the medical field for what has happened to me or even how they have struggled to treat my FND. There are some good people out there trying to help as best they can. Just they are often going in blind, as how do you treat something that doesn’t really exist? Sure there are symptoms, behaviours and other presentations. Yet they lack substance like grey shadows in the mist. Where are the physical things to fix? There are no tumours, broken bones, wounds, abrasions, pathogens, strains or sprains.  Nothing. yet they try to do right by us.

On the flip side same as there are helpful medical staff, there are some real tossers too. Ones that look for other diagnosis, anything to fit their disbelief or mistrust of us the patients. I understand the ignorant, to a degree, however it’s the ones that are outright hurtful and dismissive that I can’t stand. They seemingly aren’t interested in helping, it’s all to hard, to tough, to challenging. It maybe takes them out of their comfort zones and means they need to look outside their current narrow field of view. I’m the expert,  what do you know, your making this up, it’s in your head, it’s a nocebo , your just overweight are just some of the things that have been chucked at me, when it gets to hard for them. Or maybe it’s just as Occam’s razor suggests, the simplest of explanations is often the best one and they just can’t be arsed!

Sorry this has turned into a bit of a novel and I haven’t even got to the meat and three vege yet. Still time is one thing I have in spades, stuck in my wee shoe box, yearning to be free. I think it’s important to set the scene so to speak and give you an understanding of how I comprehend and see the FND illness. In rereading this before I punch send it sounds a pretty pessimistic world view. However through all this I fight on in the belief that I can beat this and shake its shackles for a better me, the old me. Husband to a wife, father to my daughters. I know I will win this battle, though  need a little help from time to time. As there is no plan B, no retreat, no surrender, it just has to be.

Thanks for taking the time to read this 

Next Letter 

Hey,

Sorry mate you’ll be getting sick of me by now. Just thought I would pen you my FND journey or how I remember it as fair hunks of it missing and it’s been a bloody long and convoluted trip.

For me it all really started when I fell off a ladder back in 2011 and used a concrete pipe for a pillow when I landed. Also buggered up my neck and shoulder but that’s only minor change. Ended up badly concussed and pretty unwell. Can’t rememder much of this period as was just a blur for the next year or so. Had quite a lot of medical interventions and issues as I tried to struggle back to functioning order. There are two factors at play here that I believe played a big part to my budding FND issues. Firstly I was in major denial that there was anything wrong with me and focused my energies on trying to get back to work which ACC was only to happy to feed my need. This brought on the the second and most important part, that my injury was not treated properly at the time, I had no real treatment for my underlying issues, which really compounded the problem and ended up I believe driving in the onset of FND. 

Basically ACC dropped the ball on this one, then continued to work against us, as I started to unravel. They continued to be more focused on getting us off the books rather than actually treating what was by then, obviously going wrong.

Long story short was my battle over the next few years as we went on a wild roller coaster ride. I managed to get back to working then would plateau and crash . Only to try and pick up the pieces and then repeat the sequence again and again. This is where seedling FND really took hold and began to flourish, unknown to me.

I next ended up having a bleed in a vein in my eye, which completely rocked me. I needed surgery and the outcome of that was a loss of vision in my right eye. This combined with my other issues ended with me being sent to the... rehab facility.... one of my four trips there. While in treatment finally, I ended up having a heart attack as well, which just added to what was then rapidly becoming a fucked up situation.

This really muddied the waters and the ensuing years became a blur. ACC ended up bailing on us (no surprises there) as said things were too complicated and unless we could prove what was then becoming a pretty hefty sapling FND was related to the initial accident they were bailing. 

This pretty quickly turned an untenable situation into custard and treatments pretty much stalled right there. I continued to bounce round like a pissed ping pong ball, in and out of rehab and work. It was on one of these trips that a FND diagnosis was finally given. 

Why had it taken so long? You have to understand that 10 years ago the doctors were still talking conversion disorder, the nocebo effect and using leeches. FND was certainly not recognised as a thing... Though as you well know is still pretty scarce that you run into a medical practitioner that has [heard of FND]

Of course ACC wanted nothing to do with us and the new diagnosis, digging their heals in even though I had doctors now on my side. The fuckers didn’t even acknowledge that FND existed let alone say it was a result of my trauma and PTSD. So again we were pretty much left to our own devices. Though eventually things came to a head my body and brain had had enough and I crashed big time. Which ended up costing me my job, which at that stage I was hanging onto like a drowning man would a life ring.  This lead to some pretty tough mental problems, just to compound my FND which was now a pretty good sized tree. 

I then had another series of falls and ended up with more concussions on top of concussions as my body really started failing me. This ended up with multiple trips to A and E, till at her wits end my wife, told them that they could bloody well keep me, as wasn’t taking me home to watch me die in front of the kids.

This resulted finally in some action by the DHB,  back to rehab I went for what ended up being a four month stay. While they fought amongst themselves as what to do with me. By then I was wheelchair bound and really struggling. The one good thing that happened over this period was that I was looked after by one real good lad Dr Matt Richardson, he was the one that really started to advocate and work with me on my FND, which by then had reached Tane Mahuta size.  It was him that ended up suggesting EMDR treatment as a possible fix.

However as seems to be our luck with  FND, things soon headed back downhill pretty quick. One step forward, two back. I obviously could stay at rehab indefinitely so they finally agreed with what to do with me. I could go home but as there was no rehab facilities... and I couldn’t practically go back to living with my family, they would put me in an aged care facility. However they assured us this was only a temporary measure and treatment would provide a comfort blanket, to continue my rehab.

Fucken post code lottery, that’s what happened next. If I had five dollars for every time I heard, “if you where here we could offer you this” or “sorry this isn’t available in your area” I would be a rich man. My short stay in this death factory soon turned into four and a half years of hell. Don’t get me wrong the staff are nice and you get your needs taken care of but it’s not my home. That is about a kilometre away as the Tui flies. It is where my lovely wife lies in a cold bed and my beautiful girls have now grown into teenagers without me. At first they were all pretty regular visitors, though over time that has slowly reduced to where I hardly see my girls any more and my wife mainly drops in for treatments rather than just hanging out, as she has our business to run and own world to live in.

Sure we stay in touch by devices, but it’s not the same.

I live for my Sundays where I get to go home for the afternoon and spend time with them. Although the shadow of the eight pm taxi pickup back to my cell hangs over me like a bad smell. As I said earlier it’s a pretty lonely existence with often the only human interaction being the nurses and care staff as they pop in doing their duties.

Still I have gone off track, back to the FND. Over this time in the eternal rest home  the treatment promised not only dried up but in most cases never occurred at all. No physio, no EMDR, no supporting network nothing. I did and still do get regular visits from the mental health OT..., which is the unit my care has now come under. She’s a real nice lady and think genuinely cares for my situation. However I am just one more needy mouth in an overflowing nest so access is limited.

Finally last year we finally got some traction and they started my EMDR treatment.... This really has been a breath of fresh air in our lives and while it’s taken time , plus had its ups and downs we are now slowly grinding forward. The other win from the last year was due to some high up intervention in the DHB physiotherapy finally kicked in again. Though still in its early stages, it is great to finally feel again I am physically doing something to fight this bastard FND.

So this brings you up to date with the now, both treatments are continuing. Though still really struggling both physically and mentally with it all. One of my biggest issues is disassociation.  We’re my brain ends up saying to my body I can’t handle this shit and just shuts me down which really cocks things up obviously with rehab. Still we battle on, as I’m sure you know all about. The other person I must mention in a good light has been our own GP,.... He has stood beside us right the way through the entire episode including our battle with ACC and other medical professionals.

Top man really, though  he also struggled for information and treatment options, especially once the FND was finally diagnosed.

So that’s our story mate, tried to keep it as short and to the point as possible but it’s just been such a fucked up journey. Obviously been lots left out but hopefully you have got the bones . Also tried just to keep it to the facts as remembered, rather than share the emotional toll. Overall Have had a few good un’s on our side, but an awful lot of indifferent and worse, wankers as well. Still sure our story isn’t in any way unique?

You take care.