FND and it's unpredictability.

[LEEJUNFAN]

Hi everyone,

I just want to know how you deal with the emotional side of FND when you want to work so much, but the constant changing of symptoms is stopping you.

My wife wants to work so much and even went to the job centre to arrange an interview with a Disability advisor, but when her symptoms came back, as they do, she didn't go.

She's still not come to terms with it, even after seven years, and she's 40 now, and to be honest, I don't think she ever will.

In her mind, coming to terms with it means an acceptance, and that means the condition has beat her.

How do you deal with this feeling, as I'm sure you all constantly go through it.

Thank you all so much and all my prayers and best wishes to you all.

Tony and Kim xx 💕

[Hidden]

I journal my feelings. I talk to people on here. And I really do the best I can to keep pushing. Im a husband but not a father. My wife and I are very remote to any real help either family/friends or treatment/therapy. Ive gone to talk-therapy but it has only changed my perspective and I can only really reach out to people over the phone.

I can really only say that I am the sufferer and am the one reaching out for guidance and perspective. I understand this may never go away and I just ride the emotional roller coaster. Sometimes im up and happy regardless if I can walk or do anything right. Sometimes I am down and upset that I cant do anything right.

Your best thing to do is ask her to get on here and talk with people. Accepting doesn't mean defeat it just means you understanding one's position.

Example. I accept that I have a nuerological condition/disorder that prevents me from doing things. It may be a disability but i'm not disabled. I still have freedoms and I still have things I can do. I accept that I wont be back to my previous self but I can make a new self.

Now have her try. I invite her to come on and say hello because just because you're on here doesn't mean squat for her.

[tabey]

dear tony and kim

hello its been way to long you both get a huge hug.

i can relate to this so much i was fired from my job after working there for 17 years because of fnd

I'd give anything to work but its just not possible but i have dreams of work and my old friends they seem so real

they arw cruel

my wife said to me hun at the moment you can't work stop beating your self up over something that you can not change

its just making you worse

i guess she is write

but u feel FND has taken you piece by piece I'm also 40

i wish i can give kim an answer but maybe the though of your not alone may help i have loads of respect for you both

tabe x

[cgarff]

Hello my dear friends, I have missed you. I feel bad about not responding to your last email. I found it while cleaning it out one day a month or so later.

I am so sorry Kim continues to have such a hard time. Patience is hard with this. I do have good news on my end, I havent had any seizures that I know of on my end since the end of Aug. And this year I decided to go back to speech therapy after 9 years of struggling, and I am getting it back.. YAY!!! I am not a 100 % just yet, but working on it. I still seem to lose it when movements act up, or with lots of stress, or I miss medication.. Oops. But I am seeing actual progress with this. I am having less and less issues which I am so grateful for as well I think due to the right meds and my wonderful therapist whom I just love. She is giving me back the world.

So my words for you both, is don't give up, keep trying. You can do it, but don't rush your self. It's not worth it. I know if I try to do too much I will pay for it the next day, however knowing and doing something about it are two different things. I usually try too hard. And the next day I'm worthless. So coming to terms of this crazy thing called FND, we may need to learn what our bodies and minds can do all over again sometimes can be hard. Just keep trying to put one foot in front of the other, and hopefully you can come close to getting your life back. I dont think we necessarily have to accept this as a new you, and you have to just deal with it my friends.. Think of it as a challenge in life to have to beat, and thank goodness it's not life threatening, because life could be much worse.

You are in my thoughts and prayers. Love you

Cheryl

[CRPSplus]

Something I personally found very, very difficult, but even I (with help) managed to get through my stubborn hard-headedness (that IS what it was), and thank goodness I did.

Acceptance is EVERYTHING, the one thing it is not is defeat. Let me put it this way:

Without acceptance you continually fight a war. Nobody 'wins' a war. There might be the victorious, but all victories come at a cost, and those often gloating about their 'win' have often either not yet counted the cost, or are foolish enough to ignore it. Getting it yet?

What you can do is gain advantage in most major battles. For this you need a secret weapon. That weapon is acceptance. By using this half a battle is already decided in your favour, and you reach further in to your arsenal and produce your unique battalion of self management - these will be with the help of others, or a plan you have devised yourself (again, maybe with the help of others). This will largely keep daily insurgencies in check. That is what they are, "daily insurgencies", but because they are exactly that, "daily", one day rolls in to another and you get the impression it is a war - which it isn't. Wars are deep rooted, unpredictable, and exhausting. Battles can be planned for, strategies developed, and to some degree managed. Won't always work, but more often than not there is at least some degree of satisfaction that another truce has been reached when it does.

It is important to remember that within battles you cannot use your battalion without the general use of your acceptance 'first strike' capabilities, to do so is futile - the battalion becomes, and is, a wasted resource - you won't reach a truce, either with yourself or your enemy.

Acquiring this 'first strike' capability can be illusive. It can seem as distant as a rogue state trying to gain nuclear capability, and the rest of the world doesn't want them to have it.

Here's a curve ball.

All rogue states that set there minds to getting their hands on nuclear capabilities end up with.... nuclear capability. Why? Because they want to. They open their minds to how it might be acquired, listen and act on all sorts of information and possibilities. Nothing stops them. An odd one falls by the wayside, but they never lose the ambition. Virtually all succeed to some degree or another.

Kim is in search of that capability, success will come, everybody has their own journey finding it, and once found it might not be perfect, but as long as it becomes a 'first strike' capability, then that will do, particularly as there seems to be an outstanding Commander in waiting for the battalions in Tony.

All the ingredients are there.

Best wishes to both in your journey.

[boazk]

I am a senior in high school, so I have taking many difficult classes and applying to college, so I understand how it can be frustrating it can be to be unable to get work done when you need to. In my situation, I have done my best to work ahead whenever I possibly can so I am less behind. I have spent a lot of time journaling and talking, which helps me to cope. I understand the emotional roller coaster that having FND brings, but you have to do your best to keep working towards what is next. do your best to figure out what is leading you to these episodes and go from there. don't let things build up or you will fall apart. I know it is hard, but there are people in your life who care for you. Do not let your symptoms coming back keep you from working. I have gone to high school dealing with the issues (seizures, paralysis, unresponsiveness, etc.) I have spent entire school days unable to move, being threatened to be kicked out, being called a liar, and I still go. you cannot let this disorder hold you back. it will only get worse.

I wish the best for you

kayla

[Katie-IBS]

I talk to my family and friends, i say to myself I am not going to let this beat me, I think positive and I know at the end of the day I will get myself back to work, regardless, I have now been off work over 9 months. I have started going back to an excerise class which I love but stopped going due to some of my symptoms such as the flashing lights that are used in the excerise class. I think it’s important overall to not blame herself, it’s not her fault that she has these symptoms etc.

Has she thought about talking therapy ? Can her gp or neurologists help any more in anyway ?

[thinkin]

Hi,

The anger, frustration and depression that FND comes with are brutal. I'd catch a cold and it would make me suicidal. My poor husband has been though the emotional wringer - not that I've had a party either. I can remember what that was like - it was not that long ago.

I have found B6 in the form of P5P helped my mood a lot. It's transformed my life immeasurably. Both my mood and my movement. Have a look into it. It will help make neurotransmitters and help make new connections in the brain. Even after 5 years of total abject misery and being so weak some days it was a struggle to get to the loo I've improved. The best thing is that I have quality of life now I'm much happier.

Look into it yourself. There's not a right lot of research on vitamin B6 in the form of P5P. They are using it to treat diabetic neuropathy, trigger finger and lots of seemingly different things. Some people have problems absorbing enough or their bodies can't process enough of the other forms into the bioactive P5P that the body can use.

One thing I would tell you all Prof Edwards and his team are big on is resting. Keeping to 75% of what you can easily manage. Pushing will lead to a worsening of symptoms. You've got to change the way you fight this. It's more accepting that this is how you are today, but not projecting that into that it will always be that way. That's hard as the FND affects mood.

Other than that it's taking on the advice on the FND Hope website. I call my FND a "Nudge" illness. No one thing, but many things, some bigger than others tipping me over the edge. Likewise the way to recover is nudging. Not one big thing, though some help more than others. Sleep, nutrition, supplements, mindfulness, relaxation, distraction, optimising other health conditions. They seem so insignificant on their own, but they all add up. P5P helped me a lot, but I still have to do the other things.

You are not alone, I hope this helps. I realise we are all a bit different, but we also have a lot in common. xx

[Kittilyn]

I second thinkin's advice about B6. I also benefit from B12 & a few other supplements; they definitely help (I know because when I ran out recently, many of my symptoms returned..). I also have Lyme (taking treatment for this too)

Yes to relaxation, sleep, etc. Basically, I wholeheartedly endorse thinkin's advice. On acceptance, well my take on that is accepting where you are IN THE MOMENT. So, things could still get better in the future, recovery is not ruled out- but for today, I'll accept where I am & accommodate that, etc

I am now back working in a busy job, full time, after 5 months off & 2 months of phased return. I still have low days, but manage by pacing. So it IS possible. At least for now, I am okay (I admit, I was very determined, so I did persevere when it was hard some days & I might have given up...)

Good luck to you & your wife xX