It's back with a vengeance

[Reggie]

Hi guys, haven't been here for a while and feel a bit guilty of just coming back when I'm feeling ill and not supporting others when I'm doing OK - will put that right.

I lost my daughter to cancer when she was almost 6 in 1999, she had been sick for 2 years and I held it together, she could not see my fear, but when she died, panic attacks came flooding in, I felt like I was dying and would have been glad to have at the time, but I was pregnant. My son was born, he's 17 now, is severely disabled, still in nappies, cannot speak, doens't know his name and violent. He has the mental age of an 18 month old in a 6ft 4in Rugby player's body. He has to go to school away from home Monday/Friday, as he needs specialist help. He's home Fri/Mon and school holidays.

I worry about the past, the guilt of my daughter, I worry about my son's future, I worry that he can't tell me if bad things happen to him (though I don't think this is the case, he still couldn't tell me), I worry about what's going to happen to him when me and my husband are not around to look after him. I hate that he's away from home 4 nights a week, but there is no alternative to this.

My anxiety has come back this past two weeks, I can't shower, I dread waking up in the morning, I am constantly crying. I feel like I'm losing my mind. I'm a nervous wreck, can't bear being around anyone, the TV, random noises.

My young neice now has been diagnosed with a brain tumour, it's happened again, she is at the hospital my daughter was treated at for 2 years, she's on the ward that my daughter actually died on. My sister needs support, my old mom needs support, but I just cannot face it. This isn't about me, it's about my sister and getting my neice better, but I feel so guilty that I am not able to help them, I'm not even able to tell them why because it's trivial compared to what they are going through, I know, I've been there myself.

I feel like I'm going mad. I've been seeing a psyciatrist since my daughter died and on meds, lots and lots of different meds, for all the years too.

I just need to know this will pass, that I'm not finally losing the plot for ever.

Hope this makes sense.

[beatroon]

Hi there,

I just wanted to send you a big virtual hug. Reading your story, it seems to me that you have had a lot to contend with and so I think it is fairly par for the course that your anxiety will rear its ugly head from time to time, particularly with your niece's illness now maybe making you think back to your own daughter.

In my experience, it is the nature of the beast that anxiety waxes and wanes, and although it is h.o.r.r.i.b.l.e, there is a saying I like: this too shall pass.

Have you got people around you whom you can lean on and ask for support? I find when I'm bad it's helpful to have friends around me. The Samaritans also are very good, and GPs too if you get a nice one!

Rooting for you, and hope you have a better evening (for me the evenings are 20% calmer than the days!)

Lots of love x

[Annie0904]

Please, please don't feel guilty for not always being able to help others, you know it is about you too. YOU are important and you have so much going on, you must be worn out, bless you.
I have friends with severely disabled teenagers and I know that looking after them is not an easy task so I am pleased you get some respite while he is at school. That time will give you some time to recharge your batteries a little for more quality weekend time so please don't feel guilty about that either.
Are you getting any counselling or support?

[Reggie]

Thanks for your replies. I think it's a bit like treading water, every once and a while I go under and now's one of those times. Just feel nervous all the time, stomach churning. I couldn't get off my bed yesterday for an hour, I just sat on the end of it, I couldn't move.

I tended to go under the radar when I felt poorly before my niece was sick, and now we all are needed to help her (absolutely and right), but it's not so easy to just back off and have that time to breathe when you are being relied on, I should be a support but I'm finding it really difficult. My mom is 80, this is her second granddaughter with cancer and she is in a state, she panics, again, understandably, and it has a knock on effect to me. It's getting that I don't want to see her because I leave her feeling terrible and anxious, but I don't blame her, it's not a punishment, it's just the way it is at the moment. I'm not going to be talking to my family about it, because my neice is so sick, life threateningly sick. I suppose we are ALL anxious about what's going on, but having anxiety/depression issues before hand is making this really hard to deal with.

I'm lucky that my husband really understands and helps take any strain off that he can, says all the right things.

I do see a psychiatrist, have done since I started having panic attacks after my daughter died, I have been seeing her for all these years, she's upped my meds to the max, I have diazepam on standby and I am using it. I'm on 225mg Dothiepin, 30mg Buspirone, 160mg Propranolol and diazepam when needed.

I just need to keep reminding myself that this will pass, it always does, but when you're in the middle of it, I just think, what if this is it, what if I totally go off the rails and can't come back.

[Kathryn313]

Understandable thoughts in these circumstances but given you have found your way back here, among fellow suffers and people who will listen and people who will understand, it is quite likely that you wont go off those rails....not too much anyway.

You have to put your own oxygen mask on before you can help others. Xx

[pulisa]

Reggie, this must be a nightmare situation for you and no one could blame you for mentally protecting yourself from returning to a scenario where you tragically lost your own daughter. It's entirely normal to feel so traumatised and you can't support everyone although your carer "hat" will say that this is your role in life.

Would your psychiatrist be able to advise you on how best to support your niece/sister without jeopardising your own mental health? You have your challenging son to support too-you sound a very strong lady but everyone has their limits.

[Reggie]

Thanks for your responses, it does help. My psychiatrist said not to go back to the ward or clinic (which is where my daughter and I spent our time and now my niece spends her time - this is utterly crazy), my sister knows and understands that being at the hospital is hard, she knows and doesn't expect me to go to the clinic or ward and I haven't been back. She bumped into my daughter's consultant recently in the clinic and said who they were and who their niece and sister was, that's just a walking panic attack there, even hearing about him, I don't know why, he was a brilliant doctor, wouldn't have had any other one, he was great, but that part of the past is so painful.

My niece is sometimes put on different wards when the oncology ward is full, and I visit regularly then. I have said to my sister if she needs lifts or anything, I will help her, but I've been so down this week, I've just hid away, which is what I usually do when I'm anxious, but I can fib to my mom, family (not my husband obviously, he lives with me), but I lie and rarely say what's really going on from a mental health point of view. My mom knows I see a psychiatrist, she knows I am struggling and sent me a text saying "if you need to talk, I'm here, I just wish you could be stronger". She sent it because my husband text her and said, just to let you know, she's not feeling great at the moment, kind of thing, to take the pressure off.

This will pass. It's just this bit. For the first time this week I considered suicide, but I couldn't do it and I honestly wouldn't do it, but it crossed my mind, I thought about it. This family has gone through enough pain and I couldn't inflict more.

[pulisa]

Your mum's choice of words could have been more supportive but she is of the stiff upper lip generation and she didn't go through as a bereaved mother what you have experienced.

You are under intense pressure and pain-memories will flood back and cause you intense distress. You need to protect yourself mentally as much as you can for the sake of your own immediate family. If that means withdrawing whilst you deal with the thoughts and the situation so be it. Your sister knows how traumatic this is for you and doesn't judge you. You mustn't judge yourself either in what is such a challenging and distressing situation.

I'm not surprised you've had thoughts of suicide because this must be your worst nightmare but you know how much pain this would cause people who love and need you. Let your husband take as much pressure off you as possible. Do anything you can to lessen your mental load if that is possible?