Coming to terms with FND?

[LEEJUNFAN]

Hi everyone,

I've posted a similar blog related to this before but I'm returning to it because it's a big question for my wife Kim who has FND, and no doubt, all of you too.

Has any of you, or are any of you, still coming to terms with FND, and if not, what's your attitude to it?

Despite Kim recently starting Volunteering, albeit once a week for an hour, she always feels it's not enough and wants to work again and have her body back again.

She gets really down, and as a husband, I always wish I could do more.

After 3 years of fighting, we've managed to get Kim eligible for an adapted 2 bedroomed Bungalow and we now have to wait until one becomes available, bid on it, and hopefully we will be offered it.

Kim was put in the highest medical award, band A Star award and I had to write to the very top people, including the housings CEO, and local Councillor, to get this award.

Kim is only 38, and she wasn't eligible for a Bungalow due to being under 50, so it's been a long and hard fight.

However, to me, it's not enough as I wish I could give her health back.

Anyway, sorry to digress, and I wish to know whether any of you still haven't come to terms with FND, and do you think you will ever?

Many thanks and our wishes to you all.

Tony & Kim xx😊😊💕

[Newsteps]

Some days I think I have come to terms with having FND and others I don't but I am not prepared to give in. I want my old life back, I'm nowhere near the person I was a year ago but with every bone in my body I am trying to get back there again. Which I guess might be the coming to terms with part, I've accepted this is what I have and that it's going to take me a while to get back to me, but I will get there and I'm doing everything I can to help myself as im not getting help elsewhere. I hope you and your wife both find the answers and help you need to keep positive and keep pushing forward to regaining health x

[Leesaloo]

I know I haven't come to terms with this illness especially as it involves so many aspects of daily life. It also evolves into other painful problems as you go along. As fast as you get used to 1 thing another starts and knocks you again. I'm going into hospital soon and I'm hoping I'll get some answers there. Like all of us with FND we just want our lives back the way they were failing that we need help to adjust to what we have left, without that help it's a daily struggle as you just don't know what to fight and hope for. I worry if I keep pushing myself am I making myself worse, it's the not knowing the right way to progress as we are all so different that is eating away at my confidence and hope.

[cocoferraro]

I think you are very brave for writing on this sight I often think that my husband must feel the same as you, I an 51 and have had FNB for 6 years, It has affected our personal relationship greatly as my husband now looks at me as the patient and not his lovely wife, who can blame him!-but we have had the help of some many people in the NHS that my husband is feeling that he can cope with my seizures, but also can see me as his lovely wife again, little steps!-its hard-we are in our 60s!

[LEEJUNFAN]

Hi Coco,

Thank you, and everyone else for all your kind and honest replies to my post.

FND, without exception, tests peoples relationships and emotional and physical wellbeing to the limit.

I completely understand both you and your husbands views, and I can assure you, as husbands or partners, not being able to take away the suffering is the most helpless feeling we have.

We both are so glad that you've got the help you deserve and, as you correctly point out, it's small steps, day by day.

Kim's Orthotic who we seen yesterday for her leg problems even admitted that she had never heard of it, except last year, when a patient she seen had FND.

During the night he's ok, but during the day, his symptoms start.

She mentioned how she wanted to look more into FND for her own edification and I gave her the FND Hope website.

Like she said, one can't plan anything due to the unpredictability of FND.

We send you our heartfelt wishes, and whatever your beliefs, we send you our prayers to you both.

Be there for each other - always.

Lots of love to you all.

Tony & Kim xx

[Ccaldwell]

I wouldn't say that I have come to terms with FND. I do not like it. I do not want it. I am angry for the circumstances which may have caused it.

HOWEVER...

I have accepted that I do not need fixing, I am just me, with all of my nuances, I am not flawed.

What I do have to do is find a way to move through this world the best way that I can given who I am.

That is really no different that anyone else in this world.

[salfnd]

Hi Tony, Thank you for sharing your story and some great advice given. We are deal with our fND Differently, it took me along time to come to terms with it and I done this by just taking my life hour by hour, day by day because it changes so quickly with seizures that just happen without warning. Being Admin on the Fndhope has helped me so much because ive learnt so much plus im able to help others, which has taken my attention away from myself. I do alot of Mindfulness and Relaxation when I can just to try and rest my mind which helps. I suffer with Fibromyalgia as well so wide spread chronic pain stops me alot sometimes and its all about pacing myself, its taking me along time to get to where i am and its been difficult and i do have pity parties still but they are becoming less.. I hope you and your wife can get through this with Love , strength and hope. We are all here for you giving you support. Sending gentle hugs xx

[LEEJUNFAN]

Hi there,

Thank you for your reply and we agree with everything you say, it's hour by hour, day by day.

You all without exception help Kim and myself and we gain our strength from this family site.

How do you deal with Bonfire night and all the bangs leading up to it?

We used to love it, but now we dread the fireworks which set Kim's symptoms off.

Thank you for your kind words.

All our love to you.

Tony & Kim xx