Do you feel overwhelmed by your carer

[DNE92]

Hi

I know that lots of us have no support from families etc. Sorry this post isn’t meant to offend you. I’m lucky to have a husband who does a lot for me. But I’m beginning to feel overwhelmed and losing myself by his actions. He tells me I can’t go places, to calm down when I’m speaking with other people especially my children, to go have lie downs. But especially when we go anywhere the first thing he tells people that I take seizures. I was just recently booking into a hotel and he and the receptionist where talking about what to do with me as if I wasn’t there. I’m Me first and foremost. I’m just unlucky to have FND. I pay for a private therapist and she has told him on several occasions that he needs to stop “smothering me”. This morning (we are still on holiday) I made myself some tea and then fell asleep and spilled it all over the bed (probably tired from collapsing outside the cinema last night - another he doesn’t let me go to). Anyhow his words this morning to my accident where “you’re fucking useless- if it isn’t tea it’s piss”. Yep I have Irritable Bladder System plus voiding problems. Hit the jackpot there. He knows how embarrassed I am when I wet myself -it happens in public too. And I go to bed in big incontinence knickers made for someone twice my age. Sorry probably TMI. So what do I do - stay with him or separate- I’m at my wits end with FND, doctors etc. I just can’t take anymore? Help please. Thanks Lou

[Heartofgold]

Hi Louyse! First off, thank you so much for your post and for reaching out. You know, a lot of times spouses are just as overwhelmed as we are. This is especially so if your condition has been around for a while. Outside of this post, I have no concept of the type of individual your husband is. So as for the outburst, those are disrespectful and unnecessary, and should be dealt with as kindly as possible - but need to be addressed immediately. As for the "smothering", everyone loves differently, and sometimes we get annoyed with it, but they're just looking out for our best interest, and I think that that's something that really needs to be considered as well. Also - Mattress protectors at Wal-Mart are a spectacular thing, really...they are great, and never feel guilty. You have a condition, and are seeking help - that's awesome! To address your last concern, and with as much kindness and light I can send your way, whether you should be with a person is not necessarily a question to ask here. Everyone would love to speak their mind and share their opinion, I'm sure. But we don't know your husband, and we can't tell you that - it wouldn't be fair to the situation or to either of you. From personal experience, this is a typical spouse reaction...it shouldn't happen every day, but sometimes it does happen. I think what you need is to feel confident and reassured, and for that you've come to the right place! Much love to you

[DNE92 Moderator FND Hope UK in reply to Heartofgold]

Thanks. We did have a rather acrimonious “talk” about it (pretty much coming to a separation decision). But then we talked in a more adult way - he was really sorry for what he had said and yes he told me that he is always left to pick up the pieces when I have seizures in public. I know about carer fatigue and guess it was just one of those outbursts and he said he couldn’t deal without me. So we decided that when we get home we’ll talk more about where we need to draw the line between my freedom and his deep concern. Thanks for replying. Cheers Lou

[Heartofgold in reply to DNE92]

I am so happy to hear that! Good for the two of you. It takes two for sure. My husband and I have been together for 7 years, and I have had symptoms for 2. We have lately had a lot of "discussions" about the issue. BUT, we always approach it very calmly, we address all of our concerns (sometimes we yell, sometimes we cry, sometimes we laugh, hug and high-five [kidding there]), but just always understand that there is a great deal of love between you. It can just get covered in the daily dust of symptoms, but find moments to enjoy each other to make the bad times not so bad.

[Leesaloo]

Hi louyse, from the few memories I have left of my terrible 2 and half years of FND symptoms before seeing professor Edwards and having answers before some of the symptoms eased off on their own. I can remember laying on the floor for hours unable to move, crawl etc just waiting for the seizure to ease off and my partner would come home from work and step over me and not say a word. He was at his wits end and had to work knowing I was having seizures for hours but unable to help. It still hurt as he never spoke. He is now very bitter about the lack of help from professionals, family etc. I looked like I had Parkinson’s and legs just wouldn’t hold me up, it took hours in the morning for the pain to wear off enough to get out of bed, some of the drugs the dr trialed sent me insane and I just wanted to die. Although this he helped me as much as he could but I’m sure there were times he’d had enough, he spent over a year on his own watching television as the television caused me seizures, sometimes he would shout at me then get upset. It took over 3 years to have a semblance of the life I had before and I’m glad we are still together still trying. FND can break the toughest person or couple, one thing I can say is we all try to get by the best we can but sometimes we lash out unthinking, I bet your husband feels guilty and sad for lashing out at you. I know I’ve said awful things to my husband and daughter, I don’t remember what but I do remember the tears. It’s an awful illness for everyone involved. Maybe his smothering of you is because it breaks his heart to see you still struggling and trying to have a life outside of FND and all it brings. Good luck and best wishes to you and your family.

[DNE92 Moderator FND Hope UK in reply to Leesaloo]

Thanks for replying. I am sorry for your experiences. My husband and I had a rather acrimonious “talk “ about things. But then we had a more mature conversation. He was really sorry for what he had said and told me he couldn’t do without me. He bought me a surprise present. I know about carer fatigue and reckon the words were uttered those circumstances. He explained that when I have seizures in public he is left to pick up the pieces and get me to safety while trying to protect my dignity. He also has to argue the case at hospitals when I am still in a seizure. Like yourself he has had no carer support or support for me. He too feels helpless. He recently attended a Consultant Neurologist with me - he usually just waits in reception. When he saw how I was treated he was enraged. I explained to him that they are always like that but I do give as good as I get. When we get home we are going to re-access how we balance me having more of my own independence back while allowing my husband the ability to not always be worried about me. Cheers Lou