Hi this is my first post. I have hypertrophic obstructive cardiomyopathy I have had a ICD fitted for nearly a year and I got my first shock on Tuesday it has left me feeling scared to death and I don’t want to leave the house my legs are like jelly and I just keep reliving the shock, which same as everybody else I never expected to happen. Just wondered how other people felt after a shock?
Many thanks
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I feel like you do. I was diagnosed in June and couldn't believe it. I very looked after my heart failure husband for 28 years. I feel so exhausted because I continue to care for him but need care too. I worry about the prognosis. I feel I'm turning a corner then realize that it wasn't a corner. Just a good day. I've torn up my bucket list! Anyone else feel like that?m
Hi yes I seem to have good days and bad days. Sunday’s always seem to be bad days and no amount of reasoning gets through to me.
It sounds like you need some help yourself. Is there anybody who can give you a hand or a break. Sometimes you just need to chat to somebody different or even somebody you don’t know x
Thanks. This the first time I have ever used a chat line but I think it will help. I know I need to communicate more but feel I'm protecting my son's from bad news so keep my worries inside. Thanks again for responding.
Hi how old are your boys? Can they make you a cuppa? I suffer terribly with anxiety at the moment- it makes all daily tasks 10 times harder.
Do you have anybody you can talk to? Keep talking to me maybe we can help each other x
My sons are middle aged and away from home but one got married last month and his new wife is very caring and comes twice a week so things are going to get better. I am the problem like many overcoming the initial shock of being ill and having to make mamouth adjustments to my life. Looking at the chat lines has been therapeutic. So many very unwell people!
Hi yes I have only found this site this weekend. I’ve just lost my driving license for 6 months which has really floored me. Everything is relavent to to yourself and don’t feel guilty for that. I’m in worse case senario mode at the moment. I’ve picked myself up before. When you are a mum that’s what you do however old your kids are. Baby steps I’m told. Keep in touch maybe we can help each other xx
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Hi. I have an ICD too, so thought I'd say hello even though mine has not shocked me...yet? I would imagine the way you are feeling is very common. Was it a necessary shock, or did it shock you for no medical reason? Just wondering whether it is the fact you needed shocked or the shock itself that has left you feeling so anxious. Either way, would be a good idea to talk to someone about how you are feeling. The cardiac nurses at the BHF Heart Helpline are always a good port of call - 0300 330 3311 during office hours.
I know when I first got my ICD I was scared to leave the house and I made myself do it, taking it slowly, having someone with me or letting someone know where I was and asking them to keep in touch via phone. That really helped me get confidence in my device and start getting back to normal. The longer you stay in the house, the harder it can be to leave, so I'd recommend taking some baby steps towards facing your fear. Have you got someone who would support you by going along on a short trip outside?
Hopefully you get some replies from folks who have been shocked, but in the meantime definitely make sure you talk to someone about your anxiety/fears. Good luck and lots of love xx
Hi Laura. Thank you for such a lovely reply. I felt exactly like you when I had my device fitted and slowly slowly I managed to get my confidence back. When I first started going out I was a nervous wreck, but that got better in time until I didn’t really think about it. That was just under a year ago. My shock on Tuesday was a necassery shock. I was very naive in thinking that I wouldn’t have a shock. I received the shock whilst sat in front of the hairdressers mirror, so saw my body be shocked.
That’s now one of my nightmares.
I just seem to have fell apart. I’m very strong normally. Yesterday I tried to walk to the local shop, when I got there I literally thought I was going to die in there. Maybe it was too soon.
Today I’m going to try with my partner, to be honest 8 feel so sick at the thought of leaving the house. Added into the worry mix is I can’t drive and I’m self employed. My partner says I’m in too much of a rush, just relax and give myself time. I’m just so full of fear. Xx
Your partner is right, you should take your time and be kind to yourself. The not driving thing is obviously a massive pain but take it as a good excuse to rest and relax for a while if you can. Glad to hear you are trying to get out and about. I'm sure it will get easier over time. Hopefully as time passes you'll be able to feel glad you had the icd there and that it did its job so well! What are the chances of being sat in front of a mirror when it happened?! No wonder you're a bit wobbly after that! Keep chatting to your partner/family/friends and posting on here but do try to talk things through with someone a bit removed from the situation too x
Hi Laura. Thank you I did ok today, was really difficult I managed to go in some shops and did actually forget for short periods. Something reminds me and back to wobbly. However a lot better than yesterday. I’m back at the hospital on Friday for an echo and further again to look st my device to see how I’ve done in the last 10 days. Hoping that’s all good and will push me on my way.
I hope you are well.
Keep in touch hopefully we can swap advice as we go along x