I’ve been very bitter this week and avoided posting on positive posts cos I could only see they just amplify my limitations and feel pain.
Rather than finding inspiring I felt like a grumpy old fart and I’ll be totally honest wanted to post “it’s alright for you mate but I can’t do that without pain and exhaustion”.
Forgive me😔
But I’m off out (after I’ve washed otherwise it would be cruel to my designated driver and make them suffer after their kind offer of taking me out) for a trip round Home Bargains. Soooo excited.
It’ll be painful and exhausting but I’M GOING OUT and getting off this sofa.
Then I’ll rest for a few days 🥴
It’s probably not great for my heart to over work it (I mean going to the bog over works it so…..) but I DON’T CARE today.
I’m sorry you’ve been feeling a little bit low lately.
I can understand how you feel when it comes to being in pain all the time and not wanting to do things due to the fear of it making it worse from the myocardial bridging.
I’m glad you’ve decided to go out today. The sun is out, so I hope that cheers you up a bit and makes your outing more pleasant.
Have you had your medication reviewed to see if any adjustments can be made to help with the symptoms of the bridge?
thanks, there is no meds to adjust as I’m on nothing specific to the bridge as they exhausted all option some twice over. No beta blockers as asthmatic. I was already on amlodipine for HBP, atorvastatin for HC and then later clopidogrel/ lansoprazole.
I can’t understand how people are suppose to remain in pain. Are there any painkillers which are safe for you to take?
I hope you’re not in too much pain this evening and get a break from it.
Well, good for you Fishface 101. (Love the Name by the way lol 🤣). Best thing you can do and hopefully you will feel so much better afterwards! Have a good time! 😊👍
Dear You,
What's to forgive? how bloody honest you have been posting such a post? I think not and can do nothing but praise your clear and well put message .
SOME DAYS SUCK !!!!!!
And yes sometime the little devil { not so little } on my shoulder says some very nasty things when I read a positive post on my down days.
Welcome to being human and all the complex feeling that involves , you are not alone feeling it, or do you have anything to be sorry for or seek forgiveness for.
What you have done is the best "cure" for these feelings, beat them down by doing whatever you can.
You are a star just learn to twinkle more
Take care
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thank you, don’t deserve those positive words but I’ll take them. 😊
I really like the learning to twinkle more, that little devil frequently tells me I’m no use to anyone and become a burden. I need to learn to drown it out.
Today was good, tomorrow might not be but that’s ok!
You take care too!
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Then we are here for you tomorrow and any other day you need us
Nope not called for at all, you must always celebrate your achievements and your doing great with your gym days.
This is all me and how I am viewing life ant present, and not down to anyone else.
My thoughts on positive posts is part of my finding things hard at present. I’m often “numb” to life only way I can describe it. I don’t feel part of “life”.
But getting out today for a little bit of retail therapy was good.
Now back to my sofa but I feel brighter.
In a way you posts have helped me. I won’t be exercising in the gym but I’m getting out the house.
No need to ask for forgiveness, you are only human after all.
I hope this little trip out doesn't take too much out of you and it was worth the effort.
Hello
It is best to get it all out how you feel good or bad and I hoped it helped posting we do understand
Good for you going out I hope it will be better than you think and you enjoy it let me know what you got from Home Bargains and try not to get to excited x
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Yes it did help posting now you say it. I’m not promising I won’t be back down in the dumps but today proves I can have good days but I have to make those good days happen they are not going to arrive by themselves.
afraid I only bought toiletries and bleach! But it was nice I’d missed it. My sis in law carried the basket and the shopping so I tried not to go mad.
But I did buy three clematis from Asda (very light and easy to carry) and just gave my son the good news what he’ll be doing this weekend 😂
thanks for the understanding. ❤️
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Hello
No one can say what tomorrow will bring and how we will feel but today turned out to be quite a good day and getting out has helped and you have even thought of your Son getting the clematis to keep him busy this weekend
Hope you have a relaxing evening x
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thanks, oh he’s not happy about it, he knows he’s my manual labour but I do repay him with take out. He’s rather play computer games 24/7 but he’s a great help 🥰
thanks - living a little seems a good idea, as you’ve said before I’m grieving the life I used to have and thought I’d have - living a little just looks different now.
I might get a walking stick I don’t need it but I think people see me and think what a lazy moo why isn’t she getting out the way, why she taking so long. That’s invisible illness thing I guess. I look fine to look at!
But I’m very much looking forward to an early night, and a restful few days.
You will be so pleased with yourself when you get home that you achieved something today and made that decision to go out. Three cheers for you and your courage. You are a wonderful inspiration. There is definitely nothing wrong in how you felt, so nothing whatsoever to forgive you for. We have all been there and know exactly how you were feeling.
Sometimes it's easier 'not to' than 'to'. So good on you for deciding 'to'-even if it was a jaunt for some retail therapy. Often better than other kinds!! Do you play computer games with or against your son? My daughter sometimes does chess and scrabble against the computer, and something to do with building farms and sweet factories, but it's not my cup of tea! I'm more wordle and wordle 2 games!
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yes definitely easier to say no! Will work on improving and saying yes more. ❤️
thank you, it went well, I was forced to go to my sis in laws house before she brought me home, to have a cuppa as I haven’t been for months, it was nice.
I’m not going to talk about the pain during and after, just focus on today was a good day.
I understand the struggle, we all have different reasons, but in spite of that I’ve seen you (I’m sure I have?) post positively so I can try and follow suit. ❤️
Nowt to apologise for. Fully understand hope you enjoy/enjoyed your trip.
ah thanks for the acknowledgment, I’d have never thought of looking at it like that.
Seems I’m in similar position as your good lady wife, no meds have worked and no surgery possible.
My mind has been and probably will keep going back to grieving for what I want and always wanted to do and for what I used to do and then feeling frustrated/ disappointed and yes bitter.
But I’ll work on focusing on “doing what I can”. Little by little.
It was nice being out and being “normal” but I need my sofa now.
❤️
erm the card was getting the cardio workout even if I wasn’t 🤭
Hi Fishface101 I love that you are brave enough to admit to being grumpy & that your excitement of your impending trip shines through your on-line-post. I do so hope that you have had a really great day out & that it managed to lift your spirits lots & not empty your pocket too much. I wish you a restful few days in getting over your exertion, and hope that the fun you've had on your outing will assist you in feeling more content & cheerful.
And I hope that you might be able to get to go out again soon!
Although i guess that might depend on if you behaved yourself today (Haha.)
It must be very hard to be enforced into unwanted inactivity. I wonder if travelling the world via You Tube might help to ease your restless spirit? If you can get You-Tube on to your television there's lots of people doing walks with cameras now - including lots where there's no inane- chatter or talking. We've visited parts of Italy, Japan & Sweden so far from.our sofa - as if we were walking there. And done lots of fantastic railway journeys from the sofa too.
thank you for those words of encouragement and I will definitely try sofa travel, I think I can get YouTube on the telly I’ve seen the kids do it! I’m long overdue picking a book up too so I guess I was comparing my life to others when I just need to make up my own.
Yes a bit of a dent in pocket but it was spent on 90% essentials!
❤️
You go out and enjoy yourself. I know how you feel. I might not be as bad as you. But these horrible congenital disease are the pits and I might still be able to do things but my condition will not be able to have an operation, which could make things worse. But I agree there comes a point where you carnt let your heart issue rule your life. But it is frustrating and hard. I don't know how to explain it but from the outside I look normal and well but inside it is screaming out. Could be tablets could be anxiety. But you just feel down and messed up. I hope you did go out and enjoy yourself, baby steps. But I do know half of how you are feeling. It is hard though.
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you know more than half what I feel, you’ve described it all very well including the invisibility of our conditions and then they are rare to boot. The mental side is definitely tougher than the physical.
It did do me good today!
❤️
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Glad it done you good. You are right the mental side to all this is awful. I don't really know where to turn. I have tried therapy and tablets but it just does not sink in. Just feel my life is on hold. Yes you have this horrible congenital problem all your life, yes it might have caused a few niggles, looking back, but nothing that was concerning, but now I know, God every little ache pain. Worry I don't really know. Yes you worry about immortality. You try and explain and all you get is live for the now you could be run over by a bus. Great. Sorry if I waffled on but no one seems to get grip of how I feel and nothing will take me back to another time a time before I knew.
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I totally get your “waffle” 😊 I think acceptance is key (this has only come to me after reading your response ) but very painful - that we will not get back to that time pre CHD, it’s gone, doesn’t exist. It’s even harder when we have no well travelled road to follow on how others navigated this journey to a new life post CHD. So I guess we make it up for our selves to suit ourselves.
I for one am not going near that killer bus as I’d probably be walking so slow I’d be a siting 🦆!
So yes we learn to live differently mentally and physically in way we are content with eventually (probably never fully happy with as it’s not what we wanted) whatever others might say / don’t understand.
Answers on a postcard on how to achieve this most appreciated.
❤️
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Yes I agree it is exceptance. But it's hard. I don't know how rare your CHD is? but mine is rare. The trouble is America is far more advanced in the knowledge. Admittedly there are now alot more children being found out, with issues, due to the advances in scanning and checks, even when they are not even born. Trouble with CHD its a stick or twist situation. Do you fix one problem which could cause another? Or live with what you have. Like I said to my mum possibly today my CHD would have been found at birth so possibly she would of had to make the hard decision on what needed to be done, and possibly I would of had surgery to fix it and possibly more surgery as I got older. But fortunately it has not caused too many problems until now. But now I know it has slowed me up, more aware. I think the mental side is the hardest part. Any way I think I will stay away from buses.
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I think you win yours is definitely rarer. 😉 doctors are learning all the time…..not quick enough for us! You take care and yes stay away from buses.
You don’t need to apologise for taking some space and feeling frustrated - I say well done for recognising those feelings and having the grace to sit with them.
I want to celebrate even more that you took that trip to home bargains and were looking forward to it. I hope that you had a lovely, slow meander and was able to relax and rest your aches when you returned home!
I (bravely/stupidly can’t decide which) walked what should be a 10 minute journey into town with my 3 children yesterday. It took nearly 35 minutes to get to the cafe, I had to stop multiple times for a variety of reasons, BUT… I did it, my kids loved it and I was glad to feel the sun on my face.
I was exhausted by the time we got home and bedtime didn’t come soon enough and my god my body hates me today for it; it was so worth it though 🥰
I hope you find ways to get out and about a bit more, in less painful circumstances. Even if it’s for a ride in a car and get an ice cream or something; you deserve enjoyment too!
thanks so many similarities there and happy you got out with your kids, I would have hated for this to have happened when mine were smaller. I was always organising trips and activities. But you have found a way and I’m sure your kids understand mum needs more time. Mine are early / mid teenagers -disappearing into their rooms seems to be all they want but we miss a day trip out at the weekend but I will think of alternative ways to get out and about. 👍
Well done MammaSoap for managing the walk with the kids to get to the cafe. Sounds like it was a special time for all outside of your normal 4 walls to lift your spirits. Hope you rested yesterday & feel better today.
Hi fishfaceRe. Trips Out / Day trips ... With Dad, who had AF, heart failure & lots of other health conditions, we'd take a wheelchair, let him walk while pushing it (instead of using his walking stick) for as long as he was able* or felt up to it, then sit him in and push him when he'd had enough (*which often ment us making him sit in when we could see he needed to) ....... then a bit later once he'd rested if he felt a bit better he'd walk for a while again.
By the end of the outing he was always exhausted still (& paid for it for a few days) but it ment he'd done wot exercise he could manage & got to stay out for a bit longer.
I know none of you want to give in to having to be ferried around by others, but using a wheelchair in the above way might assist with getting you out to still have your family outings ...assuming of course you have someone who can push it.
A walker you can sit on doesn't work as well - it only gives you something to rest on - it doesn't enable someone to move you on to see something different once you've got too tired to walk further, or to get you back to the car, etc.
Red Cross used to hire out wheelchairs so that you could have ond for a day or a weeks holiday. I don't know if they still do.
Often the National Trust properties with gardens have wheelchairs you can hire for the day.
Just thought I'd tell you as you might nit have thought of this.
thank you nope hadn’t thought about using wheelchairs I think my kids would love pushing it …. for about 5 mins. I wouldn’t have any issue using one but what I dream of is a foldable mobility scooter (very pricy) now that would get me out and about. But hadn’t thought about things places might have to lend out! Need to think outside the box I’ve lived in to date 👍
Hi, I've recently started looking into mobility scooters for my husband. There are quite a few companies that do refurbished scooters for a fraction of their original cost & they do come with a limited guarantee, which is pretty much the same with any item you buy refurbished. If you're on Facebook have a look on marketplace as there are quite a few for sale on there, just be aware that you buy what you see & some might not be the bargain they seem. Mobility shops will also have 2nd hand scooters that may be suitable & not too pricey. The advice given to me was, be sure what you're buying will do what you want it to do. The obvious one being not all are portable/foldable, not all will be able to be used on the bus, if you're thinking of using it for that. What range do you require, what speed etcI hope this has helped. Good luck 🤞
thank you, life is on hold regards returning to work (I can’t see how) so that will dictate what I can or if afford but it would make a difference to life. I will have to look at all options ❤️
I have been looking into the possibility of getting a mobility scooter, not necessarily foldable. It would give me back some independence and I’m sure my life would be transformed. You are right they are very expensive but for the benefit you would get, well worth it if finances allow. Hope you find a way to get out and about before too long.
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I’m back with this heart fear crap… I hate it
weird breathing heart sensation 
Atorvastatin 
Smiling at adversity through gritted teeth
