For the Caregivers

[Heartofgold]

What is the worst thing you deal with/what are you struggling with the most day to day? If one suffers, we all suffer - whether we have FND, or are a caregiver for someone with FND. I'd just like to share some thoughts.

[LEEJUNFAN]

Hi there,

As a husband of my wife with FND, the worse obviously has to be seeing her in pain, not being able to take it away, no matter how much we do.

Wishing I could give her her sense of independence that she once enjoyed when working.

Simple things like cycling in the summer, going out for a meal without her worrying if her symptoms start to kick off.

Glad you brought this one up as it's always been a really important part of this site.

Thank you for bringing it up.

Best Wishes always

Tony and Kim xx

[Heartofgold in reply to LEEJUNFAN]

I'm willing to bet that she'd love to have a candlelit dinner in the yard right at home. We're not worried about fancy - just enjoy spending time with someone who cares. I'm glad you two have each other.

[LEEJUNFAN in reply to Heartofgold]

Maybe in our new home, as we're moving soon to a new lower ground 2 bedroomed apartment.

We've had much stress and aggravation with neighbours and will be glad to go soon.

2 weeks or less, GOD willing.

Talk about stress!

Definitely not been good for Kim.

Best Wishes to you always.

Tony and Kim xx

[Heartofgold in reply to LEEJUNFAN]

Did y'all get the new apartment?

[LEEJUNFAN in reply to Heartofgold]

Hi there!

3 weeks and we're gone, thank GOD!

How are you doing?

Hope all is well.

Best of wishes always.

Kim and Tony xx

[Heartofgold in reply to LEEJUNFAN]

That is Awesome - God is good! I'm having trouble with stairs. My joints are suddenly in poor shape, I now have Chronic Daily Headache, and my bladder must be the size of a grain of rice. BUT, I have a good support system. I'm being optimistic!

[Kellygreen]

Hello! Our family just learned my 23 year old daughter has myoclonic epilepsy. I was surprised and sad to find out that every time she has a body jerking movement that it is a seizure. We were told for years that she shakes because of anxiety. She was recently put on a drug called Keppra and it seems to make her feel worse. This is another illness that is added to her Hashimoto’s and PCOS. I wish I could make all of this go away for her. She struggles everyday.

[Heartofgold in reply to Kellygreen]

I am so sorry to hear about your daughter, but very relieved she has you to comfort her. Our days are a lot brighter just having a companion to laugh with us, cry with us, and hug us as needed. I appreciate your comment on this post. My husband and I argue just like all other married couples. He has no idea how to cope with caring for me. He has CP and his emotional responses are very extreme in many situations. Any advice for that would also be warmly accepted. It's been a struggle, but I'm happy to have support, regardless.

[DonandLisa]

I am a wife of a husband with FND he is so cranky all the time I have too keep working because he can’t drive anymore. He gets upset about my job he doesn’t talk I am really tired.