How to plan your life when FND comes along & disrupts it?

[Kittilyn]

Hello all, I hope you are doing well today. If not, please know that I am sending you loads of strength, positivity, and wellness wishes. I am struggling a little bit myself this morning, & I guess I am posting here because I know you guys are likely to understand.

I am finding the uncertainty about how things might progress health-wise for me very unsettling. Perhaps you can relate? I know it helps to slow right down, & take one day at a time, practice mindfulness, etc. But I am finding it very disconcerting (to say the least) not to be able to make clear plans for the future.

How do you deal with the uncertainty? I need & want to make decisions about, for example, returning to work (hopefully soon) - but, as my doctors aren't saying how my condition might progress, this is proving difficult.

(I should add that when I went back to work last time I was ill, it turned out to be too soon, & likely contributed to my recent flare up...Now that I know about the FND, I want to avoid repeating that scenario...but without clear medical advice, basically just being left with the neurosymptoms website, how can I?)

Should I try counselling? Has anyone experience of this, & has it helped with this aspect?

Thanks & good wishes to all x

[Leesaloo]

Hi, I can understand where you are coming from. I’ve had this for over 3 years now and although I am a lot better this year then the past 3 I too am in limbo. I had a months inpatient for FND in London last December and was taught techniques to help with my symptoms. They said they cannot cure me but they were hoping I would progress to have more quality of life then I had. I’m now able to see family, socialise to a degree and walk a short distance without dragging or limping. Unfortunately in the 6 months since hospital I’ve not progressed to how much I wished I had. If I push too hard my symptoms return but I feel if I don’t keep pushing I’ll never have a life back. They were hoping I would be able to drive again as where I live is isolated, no bus routes and am unable to walk to a main road. This hasn’t happened as the fatigue overwhelms me, become unable to talk, walk etc. I’ve tried to drive twice now and it hasn’t improved. In a busy environment I’m unable to hold a conversation and cope with the noise and movement so although I can now be in a busy environment I’m unable to participate in conversation. I guess like you I’ve become despondent as I don’t know where my life is going or how much of me will return. Every month I hope things will improve more, they seem to have just stabilised and stuck where they are and if I try to push a fraction more my symptoms return immediately. I’m truly glad I’m not as I was seizures, crawling around, no taste, smell, constant pain etc but now I’ve improved I’m still hoping for more. Just to socialise more so I’m not so isolated and lonely.

[Kittilyn in reply to Leesaloo]

Hi leesaloo, it's frustrating, isn't it?

It's really good to hear that you have improved over time - I think I am improving too (albeit slowly). I haven't done anything social yet - I'd really like to go to a few things I'm invited to that are coming up, parties & such, but have no idea if I'd be able to manage...

since nobody appears to be able to say what the future holds for any of us, we seem to be left simply hoping for the best, & proceeding with a 'trial & error' approach with attempts at doing what might help with getting well...

Ah well...mindfulness is helping me a lot....

but I would still like to be able make plans for next month, next year, the rest of my life to come ...🙂

[pickleweed]

To your question, "Should I try counselling?", I wouldn't recommend it as a first choice, unless you feel that you need counseling for something else, such as anxiety or depression. I would try hypnosis over counselling. I did psychotherapy for 1.5 years, and it did not reduce my FND symptoms much. My FND symptoms decreased when I decreased my psychotherapy. For hypnosis, you can make your own hypnosis vocal recordings on a smartphone to tell yourself that you might come out of your FND and that you are healthier and safer than your brain thinks. Instead of paying for counselling, you can get the free Woebot app for cognitive behavioral therapy, to work on fighting catastrophizing, negative mental filters, and all-or-nothing thinking. There is a workbook called "Overcoming Functional Neurological Symptoms...A Five Areas Approach" that also works on the things that Woebot works on, but it goes more in depth, and it gives explanations.

[Kittilyn in reply to pickleweed]

Thanks for this reply Pickleweed. It's really helpful.

I'm not at all depressed or anxious - just somewhat frustrated at being unable to get on with my life as I used to (before experiencing symptoms). It's the not-knowing how long all this might last, etc, that's the kicker...I'm really not keen to accept it as ongoing, chronic & incurable, & having to plan for that; I'd rather focus on adjusting to a healthier way of life (which of course is a good idea for anyone (whether unwell or not), anyway : ) )

I'll look into hypnotherapy. I'm pretty good at CBT-style positive thinking, affirmations, etc, already, & your comments about counselling not being the first port of call for FND make sense.

Thanks again.