Physically better, mentally worse.

[kefalonia1]

Hi gang, this is only my second post but l would love some advice please. Five months on from AVR l am home with my Husband but he still works so l spend a lot of time alone in the day. l am getting stronger in my body but my depression is worse. l don`t want to take tablets but l keep getting flashbacks about my three and a half months in hospital, the two open heart operations and numerous other painful treatments needed to save my life and rid my body from sepsis and endocarditis. l hide my feelings from our two Sons and young Grandchildren. l am only 61 and used to be very active and people said l looked good for my age, now l look like Lassi and my body is so scarred its like a road map. Any advice will be great thanks.

[skid112 Heart Star]

Morning Kefalonia, i am so sorry to hear of your problems. Please be assured you are not alone in these feelings, plenty of us have suffered from them in one way or another. I understand the not wanting to take medication for this, but you need to speak to someone, ask your GP for a referral, tell him/her exactly how you feel as this needs to be done now rather than wait six months.

In the meantime this place is here to help, there will be people who know exactly how you feel and from a personal point of view, sharing is very cathartic, there are lots of lovely people on here who will be more than willing to listen and provide advice that has proved helpful to them.

It gets better, the bad and dark days get less frequent the stronger you get and the more you recover. Being alone for long periods isn't the greatest, do you have any hobbies you can do, something you can do to pass the time?

[kefalonia1 in reply to skid112]

Thanks skid, it sounds like l am billy no mates. l have loads of great mates and a lovely family but l hide these feelings from them because l almost died twice in 5 weeks and now my heart is mended l feel they think l should be grateful. l don`t want to relive my delirium journey through talking it was very harrowing. l must start driving again but my confidence is a bit shot. When my friends visit once a week its great but l don`t want to be a misery and heart bore. Take care.

[skid112 Heart Star in reply to kefalonia1]

nope, you are not a misery and really you are doing fine. You came close to death, its a harrowing experience that most people will never ever come close to. I just shut everyone down and shut them out, angry at everyone including myself. Couldn't share couldn't talk, or maybe wouldn't then I started rehab, met like minded people and some very (pushy but great) nurses and suddenly the penny drops, there are others who get the same feelings. From there to counselling sessions to opening up at home and on here. We're all in that little boat together and here to help each other. That tiny little light at the end of this awfully long tunnel gets bigger by the day.

Have you got a good close friend you share things with?

[Heather1957]

Hi Kefalonia as skid112 has said most of us have felt like this at some time or another.

One of my first posts was about how down I felt and that there were occasions I wish I had not at the op. Even when things were going well I felt the same, I couldn't control it as it was just like waves of depression.

I am 8 weeks down the line and it has been getting better but out of the blue BAM from nowhere I would feel awful.

I live alone and found myself shutting people out so know that has to change, I had a bit of a set back last week and that brought me back to being depressed, I am slowly climbing back out of that.

I am actually going out tomorrow - still not driving!! I have a friend coming to stay this afternoon for the weekend so will have to socialise, it needs to be done!

You are not alone we are here if you need to talk, although talking to your husband and GP would be more important.

Please take care.

[kefalonia1 in reply to Heather1957]

Hi Heather thanks for replying, my Husband finds it hard to know how to help me, l have loads of friends but even they have not walked in my shoes. l had a very active busy life working in a wonderful day nursery and l was engulfed with love from all the kids and staff now l cannot work again. l have two handsome lovely Sons and three young grandsons so why am l depressed? Please read my other replies. Take care.

[Heather1957 in reply to kefalonia1]

I am afraid depression is not logical so while many people tell you to focus on the positives (we all say it) it won't always make you feel better. Don't be afraid to talk to your GP or take medication, take whatever helps.

I have never had any help or emotional support and yet I am thinking of having counselling in the next few months.

I have 'only' had a bypass and not had has much done to me as you and know how badly I feel so it may well be you need to speak to someone.

Don't be afraid to ring the Samaritans either it's free on 116 123, you don't have to be suicidal just needing some emotional support and I think anyone who has gone through what we have (and our families) need some of that.

[Spatz76]

Hi

I understand what you are going through. I too had very traumatic experiences in my heart "journey" and ended up with PTSD. I tried to hide my feelings and carry on but this made it worse and I ended up with crippling anxiety, panic attacks and hypervigilant to my heart beats. It was a draining time and it made me a shadow of my former self for a while. My longest physical recovery took 6 weeks, my emotional recovery is still happening 18 months later although I feel mostly OK these days.

I started to get through this dark time by doing three things,

1. sharing my feelings with others. This was not sitting everyone down and telling them in one go, it was more subtle than that, when people asked if I was OK I started being honest. I was surprised by the response, people understood, empathised and gave me support. It was a problem shared/problem halved scenario but also, I stopped feeling ashamed and realised people understood and were happy to be a shoulder to cry on or give a big hug if they didn't know what to say. I was lucky, my workplace were/are very supportive.

2. Went to counselling, now this isn't for everyone and believe me you must find someone you gel with so it may mean you need to try a couple of people. This is key as you need to be comfortable as you are in a very vulnerable state. If you don't gel with the first person try another. I tried something called EMDR therapy, this really worked for me, I don't really know how it works but it really did. I felt like a different person after even 2 sessions but had 6 all in all. If you have flashbacks I think this is worth a try for you. Have a read up on it. If you work, they probably have a wellbeing policy and may pay for your sessions.

3. This only happens when you are ready but I had the biggest cry imaginable and let myself feel so sorry for myself. I let it just all come out. I felt so much better after it I can't tell you how much.

I too have many scars, from sternotomy to ICD and multiple reveal implants. Mine are further complicated by being hypertrophic which means they are red and raised. I did find myself down about these scars but a year on it is not so bad, they are part of the journey and although I know I'll never learn to love them, I now have no negative feelings towards them. People may say you should show your scars of with pride but I have never bought into that. You can however get a lot of beautiful clothes these days that are higher neck and halter neck swimming costumes etc., all to cover up any scars which you feel uncomfortable with in public.

I wish you lots of luck in your recovery x

[kefalonia1 in reply to Spatz76]

Hi Spatz, great to know someone else feels like me. Thanks so much for your kind words. lf you read my previous replies then hopefully you will understand my struggle. Everyone including health professionals have told me l am so brave and l am some sort of hero in the hospital surviving sepsis, endocarditis, pneumonia and two open heart operations AVR and pacemaker etc etc. l also survived breast cancer twice with double mastectomy chemo and reconstruction 18 years ago but this depression is driving me insane, l will beat it but at the moment l`ve had enough. Take care. l think l will change my name to Saint Kefalonia !!!

[ChrisE1975]

Hi

I too had AVR (May4) and endocarditis and the going was/is tough. I've been on medication for depression number of years and it does help. Are you doing the cardio rehab ? I've found this really useful for me as other people to talk to who have heart issues too

[kefalonia1 in reply to ChrisE1975]

Hi Chris, l don't want to do rehab and relive flashbacks but thanks so much for your reply. Please read all my replies so l don`t repeat myself like a parrot. Hope you continue to get better. Take care.

[FMW62]

What an interesting thread! Psychology is so important. I was in and out of hospital for 5 1/2 months after a mitral valve replacement. My husband suffered so much from the strain of worrying and visiting that 2 1/2 months later he was admitted to the same ward with endocarditis and then needed his mitral valve replaced. Based on our experience I would say:

1. Keep up the rehab. It gets the endorphins (happiness hormones) going, gives you more confidence in your body under the supervision of professionals and means you are surrounded by people with at least an inkling of what you have been through. And its fun! I was terrified by the idea at first as I have never felt the urge to enter a gym in my life.

2. Between rehab classes keep going for walks. Again, it helps the endorphins, but it also gets you out of the house and there is a chance of a random chat with people you may or may not know. Walking round our local town, it is amazing how many folks of a similar age we bump into! I hadn't realised how popular gentle walking is with the older generation.

3. Keep laughing! If friends asked if they could call round, my answer was always "Only if you can make me laugh". Aim to go out to lunch at least once a week with a friend.

4. Search for a sedentary hobby that really interests you. It might be family history, embroidery, painting, understanding the weather, studying, following sport.

Sorry if this is too long a reply, but I feel I have something to share.

[Shopgirl in reply to FMW62]

Thank you FMW62 for this advice. I'm having my mitral valve replaced very soon (promised September). The wait has been tormenting. I'm only 50 and was used to being quite fit. I know there's much worse to come and I can be very inpatient with myself. I will keep a copy of your 4 points and re read when necessary. I have a sedentary hobby playing, the piano everyday but am concerned if my upper back will cope post op.

[Dazzler142 in reply to Shopgirl]

I am having mitral valve replaced in 14 days and only 45.are you coping ok mentally? I am struggling as i am keeping it all in from my family as they are anxious.all info above is so helpful

[Shopgirl in reply to Dazzler142]

Hi Dazzler142, some days I cope mentally better than others. The waiting is cruel for such an invasive op. As I've been waiting since last October I've been through most emotions, shock, horror, crying at the thought of the op itself but now I'm drained and bored with the whole thing. I feel very let down by the NHS. I keep most of my worries to myself but do share the reality of it with my husband but don't want to drain him either! I dread to think what I'll be like a few days before the op not to mention waiting in the hospital, I've been thinking of having hypnotherapy to help get through it. I've tried to keep busy by arranging days out which is easier in the summer. I wish you all the very best and you've got age on your side. Stay brave and looking forward.

[Seymour2929 in reply to Shopgirl]

Hi Shopgirl....just wanted to say that 2 years ago, I sat with my husband aged just 48, in the JR at Oxford, the night before his emergency double bypass, watching a sunset with me (and probably him) thinking...is this the last one we'll see together...sounds dramatic but that was the absolute reality we were facing that night. He went through the op, out the other side, and it has been almost the most stressful thing we have faced together - but we both got through it, learnt a lot more about each other than before it all happened, learnt that we both have more courage and strength than we thought we had, and appreciate everything that his 'second chance' has given us...on the 2nd anniversary of his op, we celebrated by buying a Canadian canoe :). wishing you all the best, and a speedy recovery

[kefalonia1]

Cheers for that great reply. lts funny but chatting to what l call my " heart club posse" has really helped. Also on the tv, its now a fact that drinking wine stops you getting type 2 diabetes. Happy days!!! Take care.

[Heather1957 in reply to kefalonia1]

I heard that too - I already have it but do you think the red wine will make it better!!!