Anyone else feel cut off from friends/ family because of this stuff? I have moderate - severe dilated cardiomyopathy. I couldn't carry on working, mainly because, as a psychotherapist, I felt while I had no control of symptoms, I couldn't take on clients. I know myself and my condition better now, but I haven't gone back to work as I can still be fine one day and exhausted the next. So, miss my work environment . But it also affects friendships. I try and get out to see people, but with appointments and "low days", I often have to cancel. So I'm less and less connected with what's " going on", and less and less included.
Then, emotionally, I just feel I'm in a different reality to my close friends and family. I'm not morbid, but the truth is I am " closer" to death in many ways, obviously with all the benefits of modern medicine, nothing too dramatic is probably going to happen soon ( although I hadn't realised my symptoms were in the Sudden Cardiac Arrest area...apparently). Anyway, (moan, grumble!) I don't think I'm being morbid, and sad, but I feel I have to edit my reality to avoid upsetting those close to me ( except my therapist!). It's frustrating and isolating. Told my better half I was reading a ( really good, encouraging) book about dying and and they were really cross and upset...is it just me?
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PrueSarn
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I knew this stuff is scary for people, but I hadn't considered that I was assuming " all the blame", when of course some of it is about how well they deal with the " heart stuff". Being over responsible is pretty much my thing! Weird how, even when you're aware of your weaknesses, people's struggles etc, it can still all get tangled up into an unhelpful pattern and negative way of thinking. Thanks for your thoughtful response, it's good to "talk"! I feel encouraged, thanks again.
I worked for forty years in the nhs loved my job but have had to leave due to health issues miss my friends and the social side.I think it takes time to adjust to a new way of living and thinking
Thatwasunexpected spoke a lot of sense.Mix when you`re up to it and rest when you`re not.I just tell people I`m recharging my batteries,good friends understand.I think most of us have those off days.It`s no big deal,there will be plenty of good days so don`t fret,don`t get depressed(we all do at times) and try to accept the new you and build your life around that.I`ve just joined a Health club that runs all sorts of classes for every stage of fitness,swimming pool and Bistro so a day or two out and meet new people.All the very best for your future.x
That’s a key for me, being the ‘new me’, and not expecting to get back to the ‘old me’.
I also now plan to do things, make dates and arrangements, and just let people know if I can’t make it, even at the last minute. Like you I can be a bit unreliable healthwise, and thought I was letting people down. But we talked about it, and they’ve encouraged me to do it this way, and have been really much more tolerant than I thought they would.
For me I think the worst part of having multiple heart conditions is the impact it has had on my social life so no, I don't think it's just you. I tend to sit out many activities I once enjoyed with friends owing to the physical strain that for them is a quick recovery but for me could lead to much more serious difficulty - and that's a big ask to make of friends who prefer activities that border on 'extreme sport'.
When even a shopping trip requires strategic planning worthy of a full scale military exercise it's hard to ask friends to make allowances and adjustments - so I don't. It's not I've lost friends particularly but more a change in the way we interact that's left me feeling socially isolated.
For example, a recent discussion here on the forum had one commenter posting about climbing hikes that were only achieved by the person taking ten steps then taking a ten-count rest-recovery. I plan to do just that to 'bag a Munro' this summer but I know it will drive my hill-walking partner (husband and no, he's not terribly patient) straight up a tree. Several years ago we were down in Devon with friends, went out to climb a certain tor (not a big one at all, it's listed as a 'easy-beginner' climb) and I had to stop so many times the entire group lost patience although they did a rather good job of pretending not to have.
I find myself gravitating towards others with similar conditions because it's easier - but we don't get together often as it's such a strain on all of us. We email and message board but it's just not the same as getting together in person.
I tend to shrug off the feeling of social isolation but I do miss being out there with a group of friends.
Hi Sunnie2day, I had to give up kayaking which I loved and used to do all year round,I still swim but a stately breast stroke cos I can`t sort out my breathing for the crawl,a 2mile walk instead of the 6mile one before breakfast but I`m alive and kicking.Like you I`m always trying to push the boundaries that bit further as you`re doing.Good for you.Geddon maid.(that`s Cornish for do it girl)
Definitely been affected by this, but maybe more by the depression, don’t seem to see many friends or family I think it makes people feel a bit uncomfortable.
I think it makes people uncomfortable, agreed! I've decided I dont want people to be uneasy but I am going to talk about it from time to time, as it's my situation and I matter as much as they do...drawing the line though, quite hard. Especially for me, I know I'm a people pleaser!
My life has changed had to stop working and I am much less outgoing now less confident and spent more time alone. Have to get a new normal now, and I am more aware of my mortality, puts everything in perspective doesn't it. I. Making the best of it though,
Think you are mirroring my experience - my husband was really unhappy when he realised what i was reading. I enjoyed it immensely (and I know that is a weird comment) but I know too well the being distanced from life feeling - stick on headphones and you can amuse yourself watching life as if it is a film - choose your own soundtrack.... Next one to read to come at "carking it" from a very different angle is Sue Black All that Remains. If you have any other suggestions for reading please let me have them. I will privately message you with another suggestion (when I can find the book and author) simply because other people do find this attitude hard to handle and upsetting so probably better to comment privately.
Of course you aren't alone. A dear friend, a very committed Marxist, told me after a bout of serious ill-health that he had abandoned class analysis as there were only two sorts of people, the well and the ill. It's twenty years since major heart surgery and I have found that people are a bit intimidated by those of us who are seriously, chronically unwell. They are uncertain of how you will react. Making them relax around you isn't just a matter of putting them at their ease but it is a matter of getting things in perspective. The point is that that however close to the Grim Reaper we have been, our survival is a matter of celebration. Far too many of us obsessively talk about our illness so that we cease to be people and become the affliction instead. There is no need to make light of things but there is a need to move on rapidly from well-intended enquiries about your health. So far as weariness is concerned, that old cliche "listen to your body" is on the money. If you have to cancel meetings, so be it. And above all live now but also to the future not with foreboding but with eager expectation. Plan days out, holidays, projects, things to do. Your life has been changed but so what. There is so much to do and being sad is not the best way of filling time. Spring is round the corner, the days lengthen- enjoy life.
20 years of severe disability then a HA, but I refuse to be defined by my illness and even though I can no longer go out with or visit friends, most of whom have drifted away, I still keep in touch online and by doing things for my interests. I write weekly news articles and edit two magazines which keeps me in touch with what I used to do and in a position where no one can see my problems which I never mention ( Except on here). People tend to be afraid of disability or illness
So true about becoming the condition rather than still being the person.
My hearties and other chronic illness friends have instituted a rule - 3 minutes tops per person about their current state of health and then it's onto where we're going on holiday/what new recipe we're trying (or binning)/what is the feeling on (insert latest movie hit here)...we all get a chance to update (moan a little ) on our health then the rest of the meet-up can be used for other conversation.
Hi dickielex. This thing about people not being happy about being around a chronically sick person in case they die mid conversation is similar to people around a heavily pregnant woman who are scared she is going to give birth in the next few seconds. This is ridicules but thats life I am afraid.
Hi pruesarn. I totally identify with you and am in a vaguely similar situation, except that I managed to feel really well for several months and in a spate of “living my life to the full” moved Away from friends and family. Now I really have isolated myself and induced a breakdown and just feel awful health-wise. Unsure how to survive without working. It's not a good time, and death thoughts just bearing down all the time.
I think the best way is to find people who understands and talk it through.
Although I'm currently quite negative my tendency is to be upbeat and push on through.
If you ever need someone to talk to I'm happy to stay in touch, even just for cathartic ramblings.
Hope you're feeling well today, as focusing on the present is a big help.
I had similar feelings to you and I told my family it would have been better had they let me die when I had the heart attack, they were very cross and told me that was selfish, I now realize it was selfish, my problem was I was reluctant to accept their help, I was a very independent person and had to step back and accept their help. We would love to go on holiday but with all the appointments we can't book anything, I feel I am holding things up. Take care and I hope these feelings you are having pass soon.
Rarely on this board and never posted a reply, but felt drawn to reply to you as I feel I could have written your post! I can identify with so much of what you write particularly this weird sense of living in a different reality! What a great description! I have described this to myself as like living in a different parallel universe! I am now on the routine list for heart transplant. I’m 57 and have lived with cardiomyopathy since teens, developed permanent AF 8yrs ago, which led to a stroke (fully recovered) and heart failure. Referred for transplant assessment 18 months ago, eligible, but wasn’t ready. So had a CRT-D device fitted a year ago, which improved things a bit, but still eligible for transplant, so I’ve just been listed.
I also connect with your struggles around work - I work as a counsellor in a charity and have just returned after 4 months off, but am wrestling with the place of work in my life, with fitness to practice etc. Mental stamina/ fatigue is a biggie with me, so even though the work is not physically active, that’s an issue. And I totally get the impact on social life, I live alone, so need to make the effort!
It’s strange, I think I have lived my entire adult life in this “closer to death” reality, having been diagnosed with HCM in the days before ICDs, and so the threat of sudden death was very real. I also always knew transplant was on my horizon somewhere along the line and so that wasn’t a shock either. All this has always been my ONLY reality, so I tend to be quite matter of fact, and to utterly forget that others might have an issue with it, or find it threatening- as someone very wisely commented above!
If you are open to PMs, I’d enjoy chatting further, if not all the best with the journey 😊
I have only just read your comments, and thank you for being able to express yourself so clearly. I am a trained counsellor, and feel when you sort of try and see your own situation, it really doesn’t help, apart from knowing if you are going down the clinical depression path! I’ve had open heart surgery, and with weeks and weeks at home pre and post, really found out who my true friends are.
I am retired so didn’t have like you to leave my job, but coming to terms with conditions, whether we like it or not, we are grieving for what we’ve lost!
I am really grateful for the help and treatment from the nhs, but now have to cope with a missed torn Achilles’ tendon. Surgery as the gap is large, really not worth taking the risk.
Apparently the antibiotic I was on for a post surgery infection had as risk, tendon tears! I should be so lucky, so it’s hobble, hobble from now on.
I do say that I try to be positive about what I can do, but with active friends leading their active lives, it’s hard at times with down feelings.
So enough from me, hope you are able to make the most of the better days, thinking of you x
I've had exactly the same isolation but not because of heart problems. I am disabled and in pain 24/7 and never know from day to day when I will be able to do anything. Travel is exhausting so I rarely go anywhere. If I make an arrangement to visit someone I can never guarantee I will get up and be able to do it. Over the years people have simply contacted me less and less. I see friends who visit perhaps twice a year but otherwise the only person I see or speak to is my cleaner once a week. When I had a heart attack I saw more people in a space of 4 weeks than I had for years but now they know I'm more or less ok they have disappeared again. I think people just can't cope with illness. The heart attack surprised htem ( and me) but then they got on with their busy lives which don't have time to think "Oh we must visit her again". You sort of drift off their radar until something happens.
I replied earlier to PrueSarn and as I said to her, you learn who your true friends are, but the day to day isolation is hard to get used to.
I do have interests, belong to a book club, and we often go to see films together, well a few of us. Just seen Cats, and Little Women. I am fortunate I can still drive my small automatic car, and with my blue badge can park really near places. That’s one plus from living with a disability!
I agree with you, I do think people can’t cope with illness, especially when it’s chronic, and not being able to walk at ordinary pace, they find frustrating I know! You just know, they always tend to be a few paces in front most of the time!
I’m so sorry you are in constant pain, that really is wearing isn’t it? I just take paracetamol 4 times a day, have stronger, but they help me somewhat.
Good to read you are able to contribute with your articles, I think we have to find some way to value ourselves don’t we.
There must be thousands of us sort of hidden away, but interesting people who appreciate a good chat and sharing!
Thanks for responding. You summed up the connection between the daily struggles you have and the isolation that can result so well, if painfully. I always thought I was rather good at being on my own, enjoying my own company, but it feels different when it isn't a choice, doesn't it? And pain, I don't have pain really, not if I'm careful, but my other half has lived with CF and inflammation problems for 20 years ( although he's been much better lately...maybe we are taking turns!) I've often thought how hard to communicate the grinding effect of constant pain, not just to the body but the mind. Basically, people like you and my partner are the real heroes, making the best of life and keeping going, you should have medals! But I think you and marigoldb are right, a lot of the isolation is people not being able to cope with the situation and unconsciously avoid it...and us!
It was lovely to hear from you, thank you!
Hi PrueSarn Of course it is you but not in the way you are seeing it! I think a number of reasons affect you and your experience. First and paramount is how you view your worth. Society creates a norm to follow. Good health, homelife,social mix and a positive attitude! You find yourself not reaching these standards and are treated as a lesser person,you feel that you are a lesser person because you are "different"have a disability and are demeaning your self because of the way you see others seeing you! You are an equal with a health issue that could become a mental health one too.Accept yourself and be proud of your commitment and determination to deal with your health issues.You are more than your health ,your family and real friends will see that.In the meantime death is the final curtain for all of us,we just hope to go when we are ready!! Be as strong/weak as you need to be,be good to yourself, And always look on the bright side of life WHISTLE WHISTLE ETC ETC Larrow
Oh dear I do feel for you. It's not you, its people who don't know what to say to you. When I was in my late 20s I developed cancer of the lymph glands. I lost my hair and a lot of weight and people stopped coming to see me because they couldn't deal with it. And at the time when you need friends the most..
I have heart failure and am waiting for my third op but I have been able to go back to work in between each op.
Whereas we used to go out together out of work, now we don't because I struggle to walk far. I so hope that once this last op is done, I will be back to nearly normal so that I can resume my social life.
If not, then I will join Age Concern where I know I can park outside and watch films or play scrabble with like minded people.
You are certainly not alone in your feelings and it is hard, very much for you but also I found friends and some family have little real understanding of how your symptoms and mood are hampering your normal relationships both in work and socially. From your back ground you will understand the real cruelty this can mean to the person suffering. In my case as a regional Chairman for a large charity looking after Veterans and their beneficiaries with a strong emphasis on comradeship I was subjected to effectively being sent to Coventry because some idiot further up the line told my committee they should not contact me due to the serious health issues I was suffering. So for 18 months they never got in touch to see how I was or even ask my Wife after my health, I am 2 years later just able to return to my voluntary work. I don't think the idiot has any idea the damage he did to me or my relationship. One recently when I quizzed him said we were only obeying orders!! The defence of Nuremburg was not acceptable then and certainly is not in a large voluntary membership organisation! What do you think?
Please take care and if anything I so understand your perspective.
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) on our health then the rest of the meet-up can be used for other conversation.
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