One year on

[Helly75]

It's been a whole year since I was admitted to hospital with acute myocarditis. I really did think by this point I'd be much better but that's not reality. I'm in pretty much constant pain & some days nothing helps , I've been sobbing all morning mostly because I'm just defeated & overwhelmed with this, I hate my kids seeing me like this all the time ,it's distressing for them too ( sorry for the misery post )

[Bekindonline]

Awwww Helly75 i am so sorry to hear this. I've been quiet, as I've had a really rough time with my health. I know how it feels to be young and have serious health problems. Did an infection cause your heart issues? Wonder if it's still lingering? Xxx

[Helly75 in reply to Bekindonline]

Sorry to hear you're having a rough time too, seems one problem has led to another for me & thank you for taking the time to respond 😊 xx

[Bekindonline in reply to Helly75]

That's such a shame. I understand as I had the wrong diagnosis for years, and it lead to more serious complications. I think the body is connected, so if one thing fails, other things start to follow. Just hard leading a restricted life isn't it? Sending hugs 💕 xx

[Helly75 in reply to Bekindonline]

You're right ,it's like a domino effect . I've had some incorrect diagnosis aswell , I know what you mean a restricted life is so so hard to accept, obviously I'm not doing very well at that 🤣 xx

[Bekindonline in reply to Helly75]

Absolutely. Bless you, that makes things more complicated. I am long term sick but you still always want a normal life. I'll pm you xx

[Sunnie2day]

You have my deepest empathy - we've talked before so you know I've had recurrent pericarditis since 1990s and I was around your age when diagnosed. Put the kettle on, it's a bit of a long read (feel free to copy and paste to a word doc for reference) but hopefully something I've written here will be of some help at this particular moment.

You may recall I'm now in my mid-60s and for the most part have developed a personal management plan that has limited the negative affect my carditis condition has on my daily life.

Over the past year especially, though, I've been 'through the wars' - having had 'that unnamable virus' twice has played serious havoc with my health, made my recurrent pericarditis and other heart-related conditions much more difficult to manage. I'm getting there but blimey it hasn't been easy or fun!

Unhelpful - often in the extreme - is knowing my medics can't offer much help, having a chronic carditis condition defies their knowledge base, frankly, and there are so few pericardial specialists in the cardiology field.

I'm not complaining (much, lol), it's simply not a set of conditions they saw all that often here in the UK although the past two years they've been on a steep learning curve that will one day help future patients - doesn't help us at the minute though. My cardiologist is great for many reasons not the least he says I know more about the carditis conditions than he does and he regrets our area hasn't even one pericardial specialist much less the double digit number he's come to realise we need up here (NE Scotland). Down South there are approximately one specialist for every three trusts - not even close to 'nearly enough' to manage the growing number of carditis conditions presenting now.

So, there are frequent times I need to go out to the garden and 'kick a tree stump' (my gran's way of venting when something became overwhelmingly frustrating).

Any of the carditis conditions that linger - and many do linger - are extremely difficult to treat and manage, and are life-changing. including causing anger, frustration, and yes, bouts of depression.

There is no magic solution anyone including 'the experts' can offer, and there are no words of comfort sufficient to the need when the sheer horror of the realisation this is now a life-long condition that has profound affect on the patient and everyone around them. The only thing I can offer you this Easter morning is my empathy - I really do know how you feel and I wish you weren't going through this.

[Helly75 in reply to Sunnie2day]

Hi sunny ,good to see you back! Yes we have talked before & I've learned so much from your lived experience, don't know how you've dealt with this for so long . Yes cardiologists are on a major learning curve this last couple of years & I hope they do actually learn something. At the minute I feel like I've just gone missing from my own life & the old Helen is lost forever, I just can't seem to get over that & struggle with accepting this different Helen ( I don't like her at all). You're right too ,it's the profound horror that only people like yourself could understand, thanks for your message & I hope you're keeping well yourself this Easter xxx

[Sunnie2day in reply to Helly75]

I'm not sure how back I am at the moment (bit of effusion increase but so far the Furosemide is slowly working to drain that off) but when the alert you'd posted dropped into my inbox, I had to re-surface.

It's not easy when you wake up to yet another day of coping with the changes carditis forces on your life, especially on holidays like Easter. I hope you can leave the heavy lifting (cooking, organising entertainments, etc) to someone else and the day brightens for you and yours

[HHH2017 in reply to Sunnie2day]

So sorry to hear you've had another bad episode 🙁 Your support of the rest of us is so kind. I only hope all of our collective long term conditions will teach cardiology teams and improve support for future sufferers!

Please don't kick that tree stump too hard (sound advice tho 👵🏻 ❤️) Take care.

[Helly75 in reply to Sunnie2day]

Sorry you're going through it too sunnie you have had such a hard time. Luckily today my eldest has arranged a nice dinner for us all from her work ( I've still managed to feel guilty for not cooking) ,I hope you have a lovely day too xx

[Milkfairy Heart Star in reply to Helly75]

I am sorry you are still having so much pain.

10 years ago my world turned upside down.

I can remember walking out of an appointment after being told that there were very few treatment options for me and biting my tongue to stop my tears.

However, I have found ways to live the best I can with my at times debilitating chest pain.

I just have to live my life in a different way.

You are still you, your heart condition doesn't define you.

Hold on fast to the precious joyful parts of your life.

Take care.

[Helly75 in reply to Milkfairy]

Thank you milkfairy ,I think I'm just in the middle of a really long bad episode & I have just had enough. I'm 3 & a half years in but things became so unpredictable after the last episode a year ago . I can't imagine this at 10 years so I'm sure you've had many tough times too xx

[Milkfairy Heart Star in reply to Sunnie2day]

Sunnie good to see you're back, even if it's you just dipping your toe into the forum.

As another living with a chronic long term condition I send you my empathy too!

[HHH2017]

I'm so sorry to hear how distressed you are. It is a long hard journey.I hope its of some help to know I am 4 years on now and recently did a handstand at my sons 38th biryhday party! Me and the grandkids thought it wonderful (hubby and sons not so 😱😂

I take each day at a time. Some definitely better than others, and I enjoy & make the most of the better days. I hope you start to see some better days soon too. Might I suggest planning some simple activities to enjoy with family and friends now & then, rest in the lead up and rest after. Hopefully you will start to get a sense of achievement and progress.

Ive been leaving with my elderly mum lately (due to her being burgled) life has been pretty much at a forced stand still, but 4 years on I have noticed further improvement with this enforced rest so as they say time is a great healer - in many ways. Love & luck in your jpurney.

[Helly75 in reply to HHH2017]

Hi , that's so funny about the handstand 🤣 knowing my luck I'd break everything if I tried that ! That's a good idea about resting before & after any activities, if I feel OK I often do too much & pay for it after ,you'd think I'd have learned something by now ,so sorry to hear about your mum that's so awful & thanks for the support xx

[HHH2017 in reply to Helly75]

So glad I made you smile 😁Its my 60th in November & Im determined to try another then 🤸‍♂️ 😂 My wrists & shoulders complained later but I didn't let on 🤫 😜I tried trampolining with grandies last summer and cracked a rib so Nana is banned from most things!!! But I do feel I can still do some fun things if I plan for it & prepare in advance with rest days 👍🏽

That 'doing too much' feeling gets us all - we are so delighted when wehave a good day its not surprising🤷🏻‍♀️ But Im learning to accept being a 🐢 not a hare.

Hope you can enjoy some ☀️ this Easter weekend x

[Helly75 in reply to HHH2017]

Thank you for the positivity & smiles 😃 I will just have to accept my limitations a bit better than I have been ,have a lovely day xx

[HHH2017 in reply to Helly75]

Whatever you do be kind to yourself❤️

[Letsallhope1 in reply to Helly75]

It is very much a common mistake, I am in a similar situation as you but for a different reason (congenital heart disease and heart failure)My life has changed dramatically in the past 2 years and still relatively young (48).

When my days are good I’m at the top of the world and try to pack in all the fun things I want to do and chores too but I pay the price for quite a few days after that one good day, sometimes paying the price means ending up in hospital with AT.

Also for me what is really upsetting is that many people don’t fully understand how the illness works and I feel that people think I’ve been dramatic and just using my illness to get out of commitments if I’m forced to cancel something because I’m simply having a bad day.

It is a bloody difficult life but I believe we must try our best for the loved ones and for those good days.

All the best xx

[Helly75 in reply to Letsallhope1]

Sorry to hear what you're going through, I understand with the other people not getting it ,it's been suggested to me on multiple occasions that I'm just not trying hard enough or being lazy, so upsetting . I was working full-time, I have 3 children, was my mums carer ,very active ,but it's like they've just forgot all that & I decided to pack it all in one day & I should just positive think my way out of it all . That has left me very isolated because I can't talk to them anymore, this forum is the only place I've found meaningful support & understanding. Thank you for your message xx

[Khartoum7]

I do feel for you..I really do.! Hang on in there Helly!

[Helly75 in reply to Khartoum7]

I will try my very best & thank you xx

[Nettekin]

Hi Helly. So sorry to hear you are still struggling and so young and with a family. You have had some lovely answers and pacing is fundamental. Are you still having treatment and/or investigatons?I had a ha and 2 stents in 2019 and have recovered well physically, but mentally not so good. I also suffer from DDD (degenerative disc disease) which makes gardening - my love in life (apart from my hubby of course!!) very difficult. However I weigh up the improvement in my mental health against the subsequent pain and I try and pace myself too. If I just do one hour heavy work in the morning, I can do another hour later. Sounds a bit mad but hope you get the drift.

With best wishes and happy Easter x

[Helly75 in reply to Nettekin]

Thank you , I will def have to rethink my pacing & limitations, I sometimes feel ok & try going back to normal levels of activity then pay the price for it. Investigations have been a bit rubbish ,they just don't know enough about it . I also have been blessed with DDD which as you'll understand is another layer of utter hell. I've just got overwhelmed & in constant distress / worrying about upsetting my children seeing me like this . Happy Easter to you too xx

[Geejay1709]

So sorry ❤️ you've been such a help and it's an awful illness😳I've just had the most unhelpful appointment with my cardio consultant, he said I've some scar tissue and not completely resolved myocarditis but that my residual pain - exactly the same as the pain I've had for a year and and half - might be acid reflux 🤨 I've never had acid reflux in my life!!!! Oh and he doesn't know if having scarring can cause a fragility and result in further myo/pericarditis... anyone else as frustrated as me and helly?

[Helly75 in reply to Geejay1709]

Thank you , I've let the emotional side get the better of me for sure. I've heard all the guff about reflux before too though I do have silent reflux & now gastritis caused by the myocarditis treatment so ended up with more problems than I had to begin with ,tummy pain is so bad ,going back & forth to gastro consultant now too . I was told this time I have some scarring aswell ,I'm still useless even having a shower I feel like I've ran a marathon. It so so frustrating & you're not alone xx

[Megaladon]

Dear Helly,Sorry to hear you are still not recovered properly. But don’t forget, although painful for the person who suffers, 1 year is not too long in our lives and your condition will get better. We have a saying in Turkey, illnesses must see a summer through before getting properly better. That means we must see a whole year before we get back to our original self. I hope this year will be your recovery year. Keep your morale high. You will be perfectly fine soon and run around with your kids. X

Ken

[Helly75 in reply to Megaladon]

Thanks so much for the positive message Ken I appreciate it 🥲 x

[Dazza11]

Hi HellyYou’ve had some great answers already, so not much to add. As someone similar age to yourself I can share in your frustration of your mind feeling young and wanting to do things, basic things, that on certain days your body doesn’t allow you to and so you feel like life is cheating you.

I think it’s vital to focus on the small wins u have, those “good days” that day when you can for example take yourself for a short walk into a forest and enjoy the colours and sights, or if life allows, a short drive somewhere, my personal fav is to the coast to walk along the beach alone, enjoying the peace, the chemical release of a change in environment & surroundings plus a big dose of sunshine & vitamin D has a huge impact on our mental health and for a brief few hours life won’t seem so bad.

Stay strong and try to focus that you are young, your illness, whilst challenging, can be managed and you can still have a wonderful life. Good luck and keep us updated.

[Helly75 in reply to Dazza11]

Thank you & you're right ,I'm the old me before illness in my mind but the body feels like someone else I don't recognise & I'm struggling with that . I had some small wins this morning but with a tinge of sadness ,my family have all went out for a fun day & I'm not able to go ,the reminders like this seem constant at the minute 🥲

[Dazza11 in reply to Helly75]

Whilst missing out on a family outing today is awful and I truly feel for you, use today to build on those small wins from this morning. Make sure you get some fresh air, attempt a short walk ( even if just round the block), enjoy the peace & quiet! Couple of hours away from the screen will help. Whilst this forum is amazing, Googling anything has me half an hour away from dying! Enjoy today beat you can

[PeterpPiper]

God Bless You

[Helly75 in reply to PeterpPiper]

Thank you so much x

[Fullofheart]

Hi Helly, I can really relate too. I'm mid 40s now but late 20s when first diagnosed with AF which has now developed into/ rubbed up against other meds related and some other pre existing health problems. I really get the " one thing after another" theme.I'm 4 days post ablation (which failed unfortunately)and trying to take one step at a time, literally, but it's hard when you just want to get on with life/ get back to who you were and are. I like to be active physically and mentally so slowing down is a bit of a challenge!

Im trying to focus on the joy of small things, like a proper cup of tea, the sun in the garden (both welcomed after a hospital stay) and having people around who care. I'm sure you have your own ways of brightening your day. But it's also OK to have a cry and a moan too of course.

Sending a big virtual hug for today and wishing you well. 🌸

[Helly75 in reply to Fullofheart]

So sorry to hear what you're going through I couldn't even begin to imagine what that's like. I understand the fight between the mind & body ,mine seem to hate each other at the minute ,I hope you get some improvement soon & thanks for the virtual hugs 🫂 xx

[Fullofheart]

Bless you. I think you're challenges sound bigger than mine. You take it easy and try and enjoy your dinner!

[nilmonisikdar40]

I am so sorry, Helly about your pains. Have the medics tell you about the cause of on going inflammation of the heart muscle. Did you at any time have steroids as a last resort. It is so disheartening to know in this 21st century in one of the most medically developed countries, one should be in chronic pain.

[Helly75 in reply to nilmonisikdar40]

My situation is a bit complicated but yes ,I had colchicine & ibuprofen which failed ,followed by steroids they didn't help either . You'd def think in this day & age something could be done 😔

[CrazyLif]

I got myocarditis after the “not allowed to mention needle in my arm”. This is now exactly 1 year ago. I have scarring on my heart from it, constant chest pains, breathing issues, arrhythmia and developed heart failure (heart failure is much better, but they are keeping me on the meds).It has been a extremely difficult year, but also a very helpless year as no one seems to be able to give me any help and advice. So thank you to all of you. Most of the time I have thought I was losing my mind as it seems to whole medical establishment has turned their back to me, as no one has been able to give me any help or advice. It has been isolating and scary. Until reading this thread I thought I was alone in my situation. I wish more than anything that none of us had to go though this - it sucks. But thank you all for making me feel less alone, knowing I am not the only one experiencing this - knowing that I am not losing my mind.