I’m a wife of an AVM Survivor. It’s been 10 months since my hubby’s bleed but its been a rollercoaster of emotion since then.
I’ve been having really bad anxiety and spells of depression. I get so anxious when I’m not around my husband and the only way I get peace of mind is when I’m with him. Its so bad that I can’t even get my self to go to work. My bosses have been so understanding about it tho.
My husband is fine although he too has his days. I feel like until he has his Angiogram in September then I will start feeling fine and reassured again…hopefully.
Does anybody else feel the same way? I don’t want to be paralyzed by my anxiety and depression. I don’t know if what I’m feeling is normal? I will be going to the doctor but I feel like people will understand me better here? I would love to hear your thoughts.
Hi Aroha! I’m sure that was really traumatic. Reaching out here is a great start, as you can hear other peoples stories.
I’m a mom of a teen with epilepsy. Well controlled, but I worry. She was diagnosed at 15 years old, right when she should be getting more independent, not less. Regardless, I definitely reached out to others who had been there before me. But if my anxiety was at the levels you’re describing, I would have found a therapist. Lots of parents and loved ones will develop PTSD from these traumatic events, and I suspect that is what you might be dealing with.
Please keep showing up here, and keep us in the loop as to how you and your husband are doing.
Sharon from ModSupport
Like we said before, I found the worry for myself being that I might have a bleed and be surrounded by people who did not know my condition, so having a wristband helped me relax a bit.
For Ben and you, I understand your concern about leaving him but do you think it would help if you knew he was spending the day with a person or people who know his condition and if he has his medical details on him? So, maybe make sure he is nearly always with someone – like having a carer at work. In more dangerous careers, this is a common thing, at least to have someone check in on “lone workers” regularly. (The other thing I did was to use the medical info settings on my mobile phones so strangers or the ambulance service could access it if I needed)… what I’m wondering is if you are on edge because deep down you’re not comfortable he would be “safe” without you. So, ways of ensuring he’s safe without you might help you come down a step or two.
I also refused to work from home – I preferred to be with other people.
I’d definitely seek proper support for you – not just him – because these things have at least as much impact on the carer as the patient. Definitely.
As always, hope something here helps.
Lots of love,
@ModSupport hi thank you. I do have a Dr appointment next week. I suppose I just needed to hear that what I’m feeling is valid and I’m not just over reacting? My anxiety gets triggered especially when Ben doesn’t feel good e.g headache, fatigue, feeling weak, depressed etc. I just seem to go on panic mode and i don’t know how to control my anxiety. I do try to keep calm but I guess it takes a while.
You do so well being a mom!
Hi again @DickD!
My main fear is that when something does bad happen to him that I’m not gonna be there? He mainly works on his own being a self employed. Ive been going to work with him and that eases my anxiety a lot. I also bought him a medical bracelet! Thanks for the great idea. He said he felt a lot safer having it on.
I too hope I will get some help and get better. Just taking it one day at a time.
Just wanted to add that he had an embolization 10 months ago. There’s really no reason to fear but there’s still that nagging thought somewhere in the back of my mind that what if its back? Can’t wait until September until he has an angiogram. Ben’s anxious for that i think he just doesn’t say much.
It’s perfectly understandable that you’re both unsure. You should both take heart from the operation and ideally not need the confirmation scan but you know what? I think I was just as in need of checking out as you guys. It’s very very difficult and some people brush it off better than others. I think I’m nearer you guys than that. Honest. Even after seeing the doc at 6-8 weeks post op, he encouraged me I was just fine but I was only half convinced. It took me a while extra year to be more convinced.
It is soooo much better if you can believe from the outset but it makes perfect sense to me that that is difficult.
September is not that far away but it’s a bit too far away to be on edge all the way. Whatever you can do to get through it more easily, consider doing.
Even if he is out on his own, is there any way he can get a colleague to check in on him regularly? It’s probably better if it is not you doing that but if you can be confident he is being looked after, it might help.
Thinking of you both!