Being ill is very lonely : Good evening... - British Heart Fou...

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Being ill is very lonely

Islandlady57 profile image

Good evening.

Not sure if I'm in the right place but after having a S.C.A.D heart attack in 2019 I thought I had recovered well n went back to work.

Feb this year was told I needed an ICD.

Had it April. It went off once and I felt it "did the job". Then beginning of October it went off 5 times in succession.

Was told it was "inappropriate " .

Im as low as I've ever been. Life has stopped.

I don't want to die but I'm literally scared to live.

Who do I speak to x?x

51 Replies

Hi islandlady. So sorry to hear of your problems. The BHF nurses are very helpful, you may like to give them a call? Perhaps some counselling may also help your psychological state, have you spoken to your GP for some support moving forward? If you can get a proper handle on your medical issues you may find you feel more positive mentally. Wishing you all the best x

Thank you for your reply. I do have a HF nurse, who is lovely, but not equipped to handle my "head" I feel.My Dr's surgery has closed and I have to travel (I hate that) to the next.

But I will phone up next week and see what's what x!x

Milkfairy profile image
MilkfairyHeart Star

Hello Islandlady57,

Welcome to the forum.

You have already had some great advice from Nettekin.

There is also a Facebook group and website for people who have experienced a Spontaneous coronary artery dissection SCAD.

beatscad.org.uk/

There are also a few forum members, who have also experienced a SCAD and hopefully will be along to share their experiences with you.

Thank you for your reply.I will look into it next week.

I have tried to "cope alone" but I think its time to find some other way to cope/live xkx

Hi IslandsladyIt does sound like you have had a really frightening set of events I’m not surprised you are scared and feeling low.

Good health is such a gift that is often taken for granted. I fully understand your title of how lonely it can feel when you are not in good health and living with a heart condition that can be so unpredictable.

Does your hospital have a cardiac specialist nurse ? Often there will be one that covers devices such as ICDs. If not speak to the ICD team. Talking through your feelings may help and some places have counsellors and / or psychologists as part of cardiac services. There are huge amounts of research that has looked at the emotional side of things especially for patients with. ICDs and it’s not uncommon at all to have the emotions you currently have.

If the hospital doesn’t have these psychological support services then like previous advice could try calling the BHF. Another group is Arrhythmia Alliance they have lots of resources. Speak to GP aswell so they are aware of things.

Did you ever go through cardiac rehab programme after your ICD as they too maybe able to offer group support may help you feel less isolated.

I hope you begin to feel a bit better soon as it sounds like you are already an amazing person that’s has dealt with a hugely challenging set of events. Better times often come when we least expect them.

Good morning and thank you for your informative and kind reply.I do have a HF nurse but since the ICD I have been in n out of hospital seeing so many different consultants/Dr's I haven't seen her much.

I had my procedure on the mainland and there doesn't seem to be much mental "support" here. I try not to be a burden and maybe that's where I'm going wrong? I need to ask for help (easier said than done lol).

I'm also very worried about my 13 year old daughter who gets left home to sort out things everytime I get taken by ambulance

. Because of covid she obviously can't come to the hospital.

She has to phone her dad, to pick her up to stay with him. Then sort the home here.

She's such a great kid and I feel like a burden to her.

It's all very over whelming right now.

But I will look into the suggestions I've been given here.

Thank you.

Have a great Sunday

Maybe you won't find black and white answers here, but sharing being scared and other emotions is really helpful and others will often recommend a group to contact so you feel you ae doing something and being active in looking for help. There is a horrible loneliness in illness, especially if none of your close friends has that particular experience, so this is a good place to share.

Thank you for your reply. That's why I feel lonely. Can't keep moaning at my loved ones because them worrying doesn't help.

And not talking about how scared I am even to be alone now is hard.

Reading the posts here will help I'm sure.

Enjoy your Sunday.

Hello Islandlady57. I found adjusting to a different life was both scary and isolating - but this is a great place for support and I'm sure many of us will admit to feeling scared, lonely and fed up at times. Just to add to the above. The NHS has a primary care psychological therapies service in each area called IAPT (Improving Access to Psychological Therapies). Each service has its own name (usually involving the word talk!) and you can either ask your GP for details or google where your service is and refer yourself. I'm sure if you called the GP surgery and asked the receptionist for details they would have them. Unfortunately the waiting lists are long, but its a good start. Some of the services now have specialist teams who work with people with certain health conditions - hearts being one of them. Keep talking to us, we can't 'make it better' or offer advice, but we've all had our own experiences which have changed the course of our lives and most of us have grappled with (or continue to do so) the kind of things you speak about.

Keep in touch.

Frances x

Good morning.Thank you for your understanding reply.

Was feeling so low last night I just kept looking until I found a/this site so I could feel not so alone.

I saw Professor K two weeks ago and couldn't really talk, just cry lol.

It was embarrassing for us both I'm sure. He did say my feelings were justified. Which made me feel better, that I wasn't making a fuss about nothing.

I will look into the IAPT.

Thank you Frances xkx

Hi islandlady.

Definitely can relate to this title. Sorry to hear your having it so rough at the minute. For me the only way to make me feel better is to have a concrete diagnosis to give me some hope that things will improve.

I’m 35 and have an 8 and 5 yr old. House is always busy but sometimes I feel like it’s just me here. Been having heart issues for 2.5 yrs now and sadly it’s starting to become the norm that I can’t do anything. Worst thing in the world to not be able to play with your 2 young kids. Had ab ablation 13 weeks ago but so far my heart doesn’t seem to be responding well. I’ve still got a shred of hope but it’s waning. Probably need another one but who knows.

Sorry couldn’t be more help. Just do your best to get a solid diagnosis on whatever it is your going through. Hopefully that will make you feel like your heads above water. If not then your probably best off talking to someone.

Good luck 👍

Islandlady57 profile image
Islandlady57 in reply to Elli86

Good morning Ellie.Thank you for your message.

My diagnosis isn't great and I guess that's what makes me worse.

But bless you. I can't imagine having to try and be a hands on mum to 2 youngsters.

My youngest is 13 and an absolute gem (fingers crossed the teens don't kick in any time soon !!) She obviously doesn't need entertaining (though I am her skivvy lol).

You are so young huni. I hope you have some support x?x

I had 4 kids under 9 with a hubby in the army at your age, so I know how that is but I was healthy x!x

I hope things improve for you!

Take care xkx

Kristin1812 profile image
Kristin1812Heart Star

Hi Islandlady. You have had some great replies. I’m not going to add ‘more of the same’, but just one additional comment on talking therapies. Since Covid (and before that, in some more ‘out of the way’ places) talking therapists have got used to adapting their methods to phone or Zoom.

In fact many now do all their work this way.

This has extended choices a lot.

Good morning. Thank you for your message.

I am going to phone the Dr's tomorrow and see about some therapy.

You are right, I have had some great replies.

Definitely some food for thought x!x

Kristin1812 profile image
Kristin1812Heart Star in reply to Islandlady57

Good move! I hope you get something sorted, and it really helps. Keep posting. Let us know how you get on, This group have seen me and so many others through some very tough (and lonely) times.

Dear Islandlady57

Major health events do a lot of damage to our mental state. Therapy can help.

Joining this forum will also help.

I wish I could write to tell you some ways forward, but my heart issues were AVR and that’s such a different issue. Black and white, replace valve and it’s done. And my children are grown up so I have no responsibilities on that front. But yes I do feel lonely. I am looked after by my wife and I get lots of contact from villagers. Best of all, a big black cat adopted us four years ago and he is always around. He is sitting on the arm of the settee as I type.

I love your name. I can imagine you living on a Scottish Island miles away from the hassle on the mainland. Or maybe you are on the Isle of Wight, very different.

Lots of us do care and wish you well.

Colin

Oh bless you. We were thinking of getting a dog to help me with some company on walks .

Alas a pet isn't practical ATM.

I envy you your little mate x!x

Not a Scottish Isle, have to get my fix of that on BBC 1 Wednesday eevenings with Dougie Henshall 😊

Yes the island of Wight is where I am.

Hence having to be air lifted to the mainland after my HA.

We don't do heart attacks on the IOW it seems x!x

I was also swept up in some romantic notion of an island in the Western Isles! I have happy memories of holidays on the Isle of Wight with my parents. Seem to remember a place called Blackgang Chine or similar? So pleased you have had lots of lovely replies. I'm sure they have also been a help to others of us who are still struggling.. Best wishes x

When i mentioned IofW I didnt think for one minute you would be there.My brother in law is on the Island and was airlifted when he had a heart attack. He is a bit miffed that its the ferry for follow up appointments. Dogs are good if you have someone to walk them every day. And you probably will meet others when out dogwalking. Cats are so very different. Different laws and the major difference is that cats allow you to join their pack whereas dogs want to join your pack. Very very different.

We used to spend a few weeks holidaying in a seafront flat in the Witterings. We could see the cars on the East end of the Island. How I miss our weeks in Sunny Sussex.

We strongly considered a move to the Island when a suitable job was on offer. Life would have differed from our choice of suburban London and now retired to deepest rural Essex.

Lots of us care about you. Urging you on to a springboard of recovery

Colin

Hi island lady. So sorry you are going through this. I have felt the way you are hun. I had a SCA and then ICD fitted. I was in a very bad place 4 years later. I started CBT therapy and then went on to EMDR therapy. This has helped me so much. I feel I'm getting my life back now. I hope this helps you hun. Please take care. It will get easier x

Islandlady57 profile image
Islandlady57 in reply to jowalk6

Thank you for your message.I must admit after my HA I was on a super high for 18 months.

I had survived it and was grateful to be able to live.

Worked through the lock down. Life was good (in my ignorance as it turns out).

Then when I was told I'd need a pacemaker/defibrillator in Feb something changed.

So with the shocks I've already had but still being in AF I'm definitely not on that high now 🙃

In a strange way it helps to hear your "low" lasted a long time (not for you obviously).

I feel less pressure to sorted ASAP.

Really glad you are feeling better.

What is EMDR x?x

jowalk6 profile image
jowalk6 in reply to Islandlady57

Never feel pressure, we all deal with what has happened to us in different ways with no time limits. Give your mind and body time to heal. I see my ICD as another guardian angel. EMDR uses eye movement to take you back to the time of your trauma. It gets hard before it gets better, but it deals with the part of your brain that keeps hold of traumas in our life. x

Islandlady57 profile image
Islandlady57 in reply to jowalk6

Oh OK. That sounds quite deep. Must take a lot of concentration x!x

Glad it helps you xkx

Hi island lady, when I was first diagnosed with HF I thought my life was over. Did the usual trick of Dr Google, he should be struck off. I eventually after 5 or 6 months got some counselling. Had to go private but it was worth every pound I spent. I eventually got to the top of the nhs list and am now with a Phycologist who works with HF patients and cancer patients. Both of them turned my new life around, and yes it is a new life, unfortunately my old life has gone. I now accept that I have changed. I still get down with the new life but I’ve learnt how to get out of a low period. I also meditate 3 times per day which helps no end. I use an app called headspace give it a go you’ll be surprised . I did throw myself into it though, as after a month thought it wasn’t doing anything but I persisted and eventually I got benefits.Been practising now for 3-4 months and it really does help. I hope you can get the help you need speak to your Dr or Hf team and try and get referred. Best wishes and go for it you’ve nothing to loose by trying. 🤞

Good morning and thank you for your message. A nurse in ccu told me about the benefits of meditation but I must admit I tried it and just didn't get it.

My head doesn't seem capable ATM.

That said, your advice to persist gives me the incentive to try again.

I get plenty of time alone so no excuses really.

It is hard accepting the things that change isn't it!

I try to be a glass half full kinnda gal but that's just not how I'm feeling ATM.

Have a great day xkx

Hi islandlady, I was a very fit 16stone gym guy. Muscles in my spit as they say. I thought I was mentally strong. Having been a director and managing director for many years. Had everything I needed. Then I caught a virus over Christmas last year. Had a cough on the morning and a 18:00 that night blue lighted into the LGI in Leeds. I was diagnosed with DCM and AF. I lost 23kgs over the next few months after I went into a real depression. My brother who had depression a few years earlier sort of pushed me into getting help. My HF nurse first spoke to me about headspace and said to me what have you got to loose! So gave it a go, practiced 3 times a day and after a month or so thought waste of time. It was only when my wife said to me one day you seem a bit cheerier today how you feeling I realised that I did feel a bit better. So I persisted and got my head into a reasonably good place, still a long way to go though, I learnt how to “ let it go” whilst I still get down I can” let it go” and put the bad feelings away somewhere. Since my head has been in a good place my physical symptoms have improved as well. The Physiologist helps no end, as she says powerful thing your brain you can either get it to work with you and be your friend or make it your worst enemy. I decided to go for the first option. I’m now in rehab, go to The gym, play golf 3 times a week( now have a buggy) and starting to enjoy myself again. Remember part of this journey is yourself, be kind to yourself and listen to yourself. I sometimes feel tired out so I have a rest day, read for the day or watch a series on the telly. I’ve stopped calling them bad days, now called rest days. Sorry to ramble on but thought my story might help you to persist, don’t give up, it will suddenly come to you. If you ever need to ramble on to anyone no problem just drop me a line and I will try and help. As you can see I know how to ramble on!!! Best wishes and be kind to yourself👍

What a lovely message, thank you.I have to say I feel I'm living a "rest life" ATM. Scared to go anywhere or do much.

Not used to being out of breath at the slightest thing.

When I feel my AF I'm half expecting my de fib to kick in.

Total limbo I'd describe it as 😔

Scared to die but Scared to live also.

Bit dramatic I know x!x

That said, the messages I've received today are the first contact I've had with anyone who knows how I feel and the positivity is very comforting.

I know I'm very depressed but messages like yours (not a ramble 😊) are helpful.

Thank you xkx

The symptoms are very difficult to deal with. I have been remarkably lucky with the heart team here in Leeds. It has taken 11 months to get my meds to a point where my symptoms are reasonably controlled. I have good heart nurse, great consultant, who responds to e mails. So think I have been lucky. You need good support from your heart team and try and push yourself when you can. You also have to play your part if you feel not right speak to the heart team if you can and get them to help out. Don’t be put off by them. Try and keep positive.

Nettekin profile image
Nettekin in reply to Putterguy

Hi putterguy. I really enjoyed reading your response to islandlady - very interesting and empathic. Since my ha 2 and half years ago I have been in complete denial and because of this I don't think I've really moved on at all. Reading your reply made me start to think about the difference between 'letting go' and being in denial. I really need to work on this. I will definitely look into Headspace as well. Thank you and best wishes for your on going journey x

Qualipop profile image
Qualipop in reply to Putterguy

My son has used Headspace and said it worked well for him.

Hi island lady, I'm from the New Forest just overlooking the island and understand your problem. Your IOW hospital services have been downgraded. Out doctor's surgery has also been closed for 28 months and we have to drive to the next small town which is annoying. But taking the ferry to Southampton must be a real pain. Thankfully some telephone appointments are helpful. Please don't give up, we're all here to help.and understand what you're going through. Our local counseling service is called italk and you can access it Via the internet I believe. Give it a try. There are also some other very helpful websites out there that offer counseling services. I hope you can get the help you need as life is worth living and your daughter needs you. God bless.

Islandlady57 profile image
Islandlady57 in reply to Ruby40

Thank you so much for your kind words.Lucky you living in the NF.

I was flown to the QA in Cosham after my HA and that's where I need to get to for any after care.

Not only is it stressful travelling alone via, bus, cat, train and taxi..its expensive.

They say not being able to afford the travel isn't a reason for not attending appointments.

Having had to now give up work the cost is a huge problem. Added stress.

I don't want to sound ungrateful for the ICD but it has changed me.

Especially as when it has gone off it was "inappropriate "....hospital speak not mine.

I will look at "italk".

Am phoning the Dr's tomorrow, see what's available to me. If only a waiting list.

Chatting on here has been helpful.

I'm queen of the "poker face" when it comes to family asking how I am. Its liberating to actually be able to tell the truth 😊

I really feel for you because I 'm in the same boat. I am seeing my GP in person on Wednesday because I can't go on with the isolation. Mine isn't because of my heart problems; mine's spinal. I've gone from doing 2 hours gardening in early June to barely able to get from room to room; haven't seen more than my cleaner and one other person since the pandemic started. I don't want to live like this but at the same time I don't want to die. It's a pity your local doctor isn't available. You clearly need not just medical help but some mental support and contact with others. Have you tried the CVS; they may know of a group that could help. Loneliness stinks and leads to depression and tablets are not the answer. You could try counselling but to be honest I've never found it very helpful. I've ended up teaching the counsellors.

Thank you for your message.My heart goes out to you huni. And I mean that x!x

I worked through the lock down so although it was a bit scary I still felt like life was relatively normal.

Giving up work has been hard.

Dreamt of "retiring " early not HAVING to give up at 57 because of my health.

I can't imagine not seeing ppl for so long. On top of being in pain etc.

Will your situation improve x?x

Puts my situation into perspective (if only it was that easy eh!?!)

What is the CVS x?x

I am definitely going to phone the Dr and see about some sort of mental help. Though it sounds like there is a massive waiting time.

Take care and message any time if you want to xkx

CVS is Council for Voluntary services. They encourage volunteers but also organise various help groups, befriending services and such. When you are unable to get out you find that "friends" forget about you and no longer visit whe n you can't visit them. We also moved house a few years back but because I don't get outside the house, I never meet neighbours in passing so to speak. My husband now lives his own life because he's f ed up of me not being able to do things or plan anything. He will take me to the hospital grudgingly and that's about it. Otherwise he watches TV in another room and waits for his meals to be put in front of him. He's autistic so he has no empathy at all.

I am single but that doesn't make me feel lonely.I think I'd feel more alone in your situation.

You do seem to have an awful lot to put up with. Do you get help from the CVS x?x

I would do what Frances suggests and refer yourself to I.A.P.T. I did that and had C.B.T. which is really useful. My daughter-in-law is a practitioner for this service and since Covid has done a lot of her work online so it doesn't matter where you live. Being ill and scared is a very lonely place to be plus you feel guilt for asking family or friends to do things. Since my out-of-the-blue heart attack 3 years ago I've found this forum really supportive and a treasure trove of good advice.

Thank you for your message.It is hard to ask ppl to do things that you used to be able to do yourself isn't it.

I've always done my own decorating DIY and could lift most things that needed moving in our little home.

Now I have to rely on my daughter.

Mind, it makes me very proud to see she has the capability to do it at a young age.

I will definitely look out the IAPT online.

I need to be able to hold a conversation with out crying again lol.

I'm dreading Christmas.

My mum is on the mainland so I've shielded her from my general mood. As are 2 of my sons.

But because they will being staying in my home it will be impossible to fake "happy/coping" me for several days x!x

I use to do all my D.I.Y. and heaving stuff around! It's very difficult not to be able to do it. I'm in Lancashire and my son's in Scotland. He's very supportive but of course can't do the practical things. Your daughter sounds amazing and I think the responsibility will be giving her loads of self-confidence.

Ruby40 profile image
Ruby40 in reply to Islandlady57

Try to be honest with them about how you are feeling. It will help you.

Hi

Meditation is good but it can be difficult doing it on your own. I do hatha yoga which is something you do to your own bodies limits. There are lots of gentle sessions on YouTube. Only a few minutes a day can make a big difference and the breathing techniques used act as a meditation without you realising you’re doing it.

Hope you’ve got some comfort by reaching out to this group and realising you’re not alone in this.

Islandlady57 profile image
Islandlady57 in reply to 13allit

Hi there. Thank you for messaging.

I am feeling a tad more hopeful that I can be "fixed" head wise. It definitely helps hearing ppl's experiences.

I really haven't ever spoken to anyone in the same boat. Always (until lately) been able to

smile and pretend I'm OK.

So all the messages and advice have been great.

Yoga isn't something I've thought about but I'm up for anything, nearly 😊, that could help.

How long have you been doing it x?x

13allit profile image
13allit in reply to Islandlady57

I’ve been doing yoga on and off for years and went back to it seriously when my heart valve collapsed as it was something I could continue doing. I went back to it a few months after open heart surgery and have built up my strength slowly but it helps with my mental health before and after my op. Maybe you and your daughter can do it together. Look around until you find a session you’ll like. There are some that are about 15 minutes so why not just watch it first to see what you think. Even that will be relaxing. If there is a local yoga class you can join then have a word with the yoga teacher and mention you have your health problems and they should be able to tailor things within the class for you. If they can’t then they’re not a very good teacher!

Islandlady57 profile image
Islandlady57 in reply to 13allit

Thank you. I will look online. Definitely not able to go to a class ATM. I'm glad I can do my shopping online lol xkx

I highly recommend trying ‘Tapping’/EFT’ (“Emotional Freedom Technique”).. it’s something that can be done on your own immediately and is hugely beneficial for mental, emotional and physical issues. The ‘relief’ it can bring can literally be within minutes for all manner of issues. Check out thetappingsolution.com &/or download the App. Hang in there.. and share with your family how you feel.. 🙏💗

Islandlady57 profile image
Islandlady57 in reply to Simes11

Good morning to you.Thank you for that advice. I've been saying I'd get on with phoning the Dr etc today and I woke up in quite a panic.

The thought of having to actually start telling ppl how I feel (it's easier a key pad) has put me in a bit of a spin. Which then makes me cross with myself and then I get down....vicious circle x!x

But if I can look up the tapping and try some self help first that would be a good start wouldn't it 🙂

Have a great week xkx

Simes11 profile image
Simes11 in reply to Islandlady57

Oh bless you! 🙏💗 Yes, absolutely.. the App has all sorts of 5-20 min (free) guided Tapping on all sorts of things from stress/anxiety to negative self-talk, and feeling overwhelmed to assertiveness. You DESERVE to be heard and to be helped.. 🤗❤️

Islandlady57 profile image
Islandlady57 in reply to Simes11

WoW the word "deserve" is quite powerful isn't it. Not sure I feel deserving x?x

But thank you for that message.

Hope the sun is shining for you as it is down here 🌞

Simes11 profile image
Simes11 in reply to Islandlady57

A little further along the coastline from you.. Devon.. & yes, it’s beautifully sunny today! 😎 A great day to feel GOOD about yourself and empowered! You can do it, step up and speak up for YOU! 🤗 And remember, you DON’T have to shoulder any of what you’re feeling or fearing in silence or alone.. ❤️

You have my sympathy and understanding. I have had permanent AF for 19 years and it has gradually got worse. I was referred to a cardiologist as my GP thought I'd gone into heart failure, but was told no, just AF. Things got worse, and another GP told me I had gone into heart failure. 8 months later saw another cardiologist who said, no, just permanent AF. But I feel so unwell that it could be HF so far as I'm concerned. I won't have another scan on my leaking mitral valve until 2023. I feel tired and unwell all the time, can't walk without a stick, have little appetite, and quite frankly don't want a long life, which hopefully I won't have as I'm 81 anyway. I've also been told my glaucoma has worsened, so all in all life is not worth living. I have no family here and few friends. I too keep my feelings to myself as far as possible, but it's getting more difficult and no point anyway.

Oh huni, you have made me cry (not that hard at the moment though). What a set of circumstances you are "living" with.I know I am lucky still having one of my children at home.

My older kids are flown and I don't tell them too much.

I don't understand the term "heart failure ".

I am living with that and AF (despite my pacemaker)

Surely if our hearts have "failed" .....well??

I must ask my HF nurse when I next see her x!x

Do you get to go out at all x?x

You obviously have the Internet? It's a god send for listening to audio books (YouTube) if your eyes are bad. It's just a little thing but I find closing my eyes and loosing myself in some audio is a little escape from the worry xkx

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