How many Carers for loved ones with FND have had to finish work completely?

[LEEJUNFAN]

Hi everyone!

I would like some replies please, from Carers of loved ones with FND.

What was it that finally made you give up work to become a Carer?

Do any still work, but like myself, struggle with feelings of guilt?

It's an emotional feeling that I struggle with every day, and even the very rare cup of tea with a friend at Costa, leaves me feeling bad because I don't like ever leaving my wife alone with FND, aside from the few hours of an evening when I'm working.

Many thanks everyone.

Best Wishes!

Tony and Kim xx

[shurdygirl09 Moderator Volunteer]

Hi My Husband is my carer and he works but he too hates leaving me because he is so unsure if I'm going to have a seizure or not. I too have Fibromyalgia so my pain levels are through the roof but I've learnt to play the pain down so my husband doesn't worry to much. I too feel guilty as a sufferer it's so frustrating that there are days that my husband has to come home from work and cook for us because I just can't do it. It's hard because then I get angry with myself which isn't good for me... I'm sure your wife doesn't mind you meeting a friend for a coffee, you have to have a break because you need to recharge your batteries and have some me time, otherwise you could get ill . It really is difficult and I can't tell you to stop feeling guilty because it's just a natural way of feelings but I bet your doing a brilliant job caring for your wife... Don't be so hard on yourself.. xx

[LEEJUNFAN in reply to shurdygirl09]

Hi there,

Thank you so much for your reply as it really helps, understanding how other couples deal with it.

I'm an all or nothing person by nature, so I find it hard relaxing.

How does your husband's employer feel about him coming home early?

Mine are not as understanding.

Do you get intense burning that goes into your feet, because my wife has recently started getting this in addition to weakness.

It's scary because we dread her having to go into a wheelchair again.

Thank you again.

Prayers to you and family.

Tony and Kim xx

[LisaH22]

Good Morning. I am working two jobs and my husband has FND. I check on him as much as I can. We did have cameras in the house at one point. Our neighbors are great and have helped at times. I constantly live in a bouquet of guilt, sadness and fear. However, my husband has learned so much and he’s getting really good at figuring out triggers and how to handle his symptoms. His job is trying to get better. My job is to make that possible for him. What kind of treatment are you guys trying. Maybe I can make some suggestions that are working for us.