After school today, I took my daughter to a birthday party at her new classmate's house. All us grown-ups were having a drink in the kitchen (tea for me, still going sober!) and one of the mums started relating a funny story about her friend telling her this morning that he'd been to the gym and walked on the treadmill for 20 minutes and was very proud of himself. She responded by hooting with laughter and wondering (aloud, to him) why anyone would waste 20 minutes WALKING on the treadmill. She then told us she felt a bit guilty because the poor guy "had been in heart failure" (obviously not aware that he probably now lives with heart failure). Oh, how everyone laughed! I managed not to tell them that I have heart failure, that I walk for 13 minutes on the treadmill, that I feel proud of myself for doing that... Instead, I smiled until my cheeks ached with the effort. Honestly, she seems like a lovely lady and I'm sure she would be mortified if she knew/understood. I was just glad there was nobody at the party who knew about any of my health issues. Erm, awkward! Ha! I came home and laughed about it with my husband, but I've made a mental note not to brag about my gym "achievements" in the playground
Oh, yeah, and yesterday a lady gave me some "Christian literature" as she passed me in the street and it had a giant picture of a heart, an operating theatre and the words "You need a new heart!" Again, I was too polite to mention the trauma of the time I very nearly was on the heart transplant list, but I was not too polite to scoff loudly. Honestly, if this stuff happened in a book or a film, you'd criticise the writing...
I guess these are the downsides of not LOOKING ill. Well, I'll take them, I'm just so glad to be in a place now where I can see the funny side
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laura_dropstitch
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People are so insensitive aren't they. And ignorant too. As you say people don't see you as having a condition when they can't "see" your heart.
I was once feeling so poorly I parked in a disabled bay as I was going into a shop and was struggling with my Breathing. I don't have a partner so couldn't ask him to go. An old man of about 70 came over ranting and swearing about young people ( yes that was me!!) Abusing parking and how dare I park there. I tried to explain... his wife tried to calm him down.He said "so what if she has heart failure she looks fit and healthy to me"
But hey we are the better people. And 13 minutes on your treadmill is pretty amazing. The man who did 20 minutes ( is he single 😁😁) introduce me 😀.
You are an inspiration -with gym looking after your little girl ( kids are wonderful but exhausting) and on top of that all your walking and work too! Not to mention the S word your husband asked about 😂😂
Go you.... And be proud. My mum has a saying which always makes me smile when we mention someone like that lady " their issue is they haven't had a problem to overcome.... would make them so much more sympathetic to others.... you gotta feel sorry for them really"
So keep smiling and know we have overcome that problem.. . Makes us better humans. Oh and now I am battery operated work colleagues call me the bionic woman...i prefer Wonder Woman.... that's what you are Laura 😀
Thanks Skid.... And I am so glad I find this forum... makes me feel normal... And we are all doing so well against what life throws at us. We should all be proud 😁 x
Insensitive indeed, i think i woukd have been showing scars by that stage. Well done you and well done on the treadmill, I hate the bloody thing!
Hi and well done you for staying quiet, I think I would have stood there full of indignation and spelling out exactly what I have and that the gentleman in question might have the exact same thing! At least we can laugh 😂 people always say how well I look and again I am not quite sure what they expect, a big broken heart stamped on my fore head lol, I spent a long time with the transplant coordinator, they haven't went down that route for the mo, thank goodness, and she said I should apply for a blue badge for parking, I haven't done so yet, but I can imagine like the previous post if people think, in there minds you look fine you are basically at it,and not just heart patients, people are so judgemental, and I get so annoyed, rant over ☺ xx
I'm doing my best to make a good impression on the other parents for the sake of my child! 😂 I applied for a blue badge, didn't get it. Make sure you fill in the application based on how you are on a BAD day. I was a bit too blasé and optimistic, I think. X
I understand what you mean, we never want the wee ones to feel any different from there friends, my two are long grown up wee granddaughter is 10, I think that's the reason I haven't applied for badge even when I have been told to do so, I heard it is really difficult to get, yesterday I had a really bad day and could not walk far, and then again I feel a bit better, it must be worse for yourself if you can't find a space and you have a young child with you as well, can you appeal? I heard it was automatic if you receive PIP, I haven't applied for that yet, again I heard they throw every obstacle in the way of getting it, it's not like we are kidding on we have HF!! 😱 x
I get PIP, had that in place before blue badge application and it made no difference. Think it's automatic if you are on the higher level of PIP maybe? I'm getting on OK without blue badge really. We're right in the middle of things, bus stops right on our doorstep etc, and my daughter will walk for miles with only a little bit of moaning! 😂 But sometimes I do have to leave car at home because I worry we won't get a parking space. Would be nice to have option to use disabled spaces now and again, but the PIP is more important to me really. X
It def would be great to have the choice, I panic all the time about a space, not locally but hospitals etc, I will go for advice on the forms I am getting ESA, just now but I have applied for redundancy, so after 30 years I won't be returning to work, I always planned to stay till 66 to get my state pension, amazing how things can change, I am so glad you can't see round the corner!! Xx
I think some people are quite brain dead. I was just telling heartlady about me being blind, I do have a little vision, but the comments I get are often assumptions through ignorance. Play ground parents are not always knowledgable (and I am speaking from personal experience). It beggars belief what was said to you in your group. But I would have answered back with a witty retort, not nasty, but maybe enough to make them aware to put their brain into gear before they open their mouths. I had someone say to me at the gym 'How can you use the gym?' 'Like you I came through the door' me and hubby did laugh. Makes you wonder where these people come from.
I certainly didn't know much (anything!) about heart failure before my diagnosis so I tend to be sympathetic towards people who make ignorant comments. Like Heartlady said, going through a major health issue does give you a good insight/perspective into life. Not everybody has that "opportunity". I try to be open with people about my heart and its treatments and implications (now that I've come to terms with it and can manage not to burst into tears!) in the hope it will make people more aware. There are lots of "invisible" illnesses, I think it's good not to assume that everyone you meet is in perfect health and to err on the side of sensitivity. But I don't get annoyed with people who don't understand.
I don't really get annoyed I usually end up upset. Too upset and yes maybe I am a little over sensitive, however, the majority of people are nice to me and perhaps that is why I react when someone question my health. I have a guide dog and to most it's quite obvious what he is. Hence why I feel intimidated when someone comments you don't look or act blind. I think partly this is because I can't see them so only base their comments on how I hear the tone of their voice. Days can be very tough and sometimes when I don't feel too great physically I can't handle it.
I can imagine it would be harder when you can't see people's faces too. I know I found these comments really upsetting for a long time, especially questions about having more children. I would try to spare the questioner's feelings and then burst into tears as soon as I got away from them. Now if anyone asks whether I plan to have more children, I tell them quite bluntly exactly why I can't. If that makes them uncomfortable, so be it, maybe they'll be less likely to ask someone else. Often, though, people are really interested to hear about my situation. But in an ideal world it wouldn't be the person with the health condition that had to take responsibility for insensitive questions. Really, I think deal with insensitive comments in whatever way works best for you, it's not your responsibility to make morons feel better. X
Thanks for that support. I use to think I had a chip on my shoulder, but I would rather people just asked me rather than make an assumption, but I do have a wicked sense of humour. Finding people on here who understand is great therapy.
Absolutely, always good to have understanding people to turn to, whether they share your experiences or are willing to listen and learn from them. As for thinking you had a chip on your shoulder...
I was the most negative person you could imagine for the first few years post diagnosis and could not stand (aaaaaargh!) when people would keep telling me how lucky I was. Lucky?! I repeat, aaaaaargh! The weird thing is, now I genuinely do consider myself lucky - I didn't know about my heart condition before I got pregnant so I went ahead and did it without fear, my heart condition was picked up through an utter fluke at just the moment when my baby could be viably delivered and my life could be saved, I live in a time where some treatments for heart failure are available and new treatments are being developed all the time, I have access to the NHS and the world-leading cardiologists it employs just down the road... All these things were true all along, but if I wasn't in a place to be able to appreciate them, they really didn't make any difference to how I felt, so I did NOT feel lucky. I struggled, I was angry, I was emotional, I was unable to move forwards, and I'm sure to some people (like the poor friends I cut off for nine months while they were pregnant) it seemed like I had a massive chip on my shoulder. I probably would have said I had a chip on my shoulder too. Actually, I was just doing everything I could to cope with a really difficult situation and I think I handled it imperfectly (as any human would) but beautifully. And now I don't know how much of my experience, if any, I would wish away because I think it has changed me for the better in so many ways.
I do my best to stay positive and respond positively to people because it makes me feel better (am I on a precarious upwards spiral? maybe) but I still have times where I come home and hide under the covers or rant and rave and swear. Living with heart failure SUCKS (and we're only human after all, even those of us who are "bionic"!) but I hope to be able to appreciate life and people, in all their varied and challenging forms. I lived in blissful ignorance for 31 years (lucky me) so I know what it's like on the other side of the health fence and I'd like to think I could support/educate people who haven't had this sort of baptism of fire in their lives yet. "I've had an experience and I am goddamn going to share it!" Ha! But I will pick my moments and I do want my daughter to be invited back to friends' houses...!
Sorry to be so long-winded, think I needed to process some thoughts "out loud"
I have had diabetes since I was 14 then at age 35 my sight was affected because of it. At first it was not to bad and really only affected one eye, but I was registered blind in 2012. Health wise I was doing just fine until March this year when out of the blue suffered a heart attack leading to needing a triple bypass. I am a good listener, very patient and always try my best to help others. There , but for the grace of God... Having been through so much has indeed knocked me for six, but I am getting back on track. I think from what I have experienced myself and read on here that there is a need to talk about 'heart issues'. So it may be you could set up a live group in your home town. There is nothing where I live, but some days I just read the post, others I reply to. It's good therapy and it stops me from feeling sorry for me when I hear stories like yours.
I'm not so good face to face, so don't know about setting up local group, but I definitely want to do SOMETHING, just not sure what yet. I have set a couple of balls in motion just this week, actually, will see if anything comes from them. I just want to feel like I own my situation, if that makes sense? Got itchy brain at the moment, forming an action plan that is a mystery even to myself so far...!
Diabetes, blindness, heart attack... Any of these alone would be hard enough to deal with. Sounds like you're doing a grand job to me x
Hi Laura, people say the most tackless things. Last month a nice Auntie rang me asking why l hadn`t been in touch for a while. l told her everything 92 days in hospital, nearly dying twice and all the surgeries etc. Her reply was "well you sound much better now your little upset is over. Brian and l have had the most awful week of our lives ever!" Concerned l asked what happened? She replied and l quote, "our fridge freezer broke and it took Currys a week to replace it! we had to buy fresh milk every day!" OH REALLY!!! my repaired heart bleeds for you.( l wish l said what l was thinking, but shes old and l do like her a lot) .Take care ,Sue x
Oh Laura you are funny and make me laugh. Perhaps you could audition for Britains got talent, as a comedian. Maybe throw in a few impressions, start practising now!!! Sue x
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