such a wimp: hi everyone, I am trying... - British Heart Fou...

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such a wimp

Jackabee profile image
46 Replies

hi everyone, I am trying to be brave and get on with it but I feel so upset. I just need some support please. I am 69 and in May , out of the blue and after a lifetime of daily exercise , a positive attitude and healthy eating , with no need for medication of any sort, I was admitted to hospital with severe Vertigo. I didn’t have a stroke or heart attack and have no other underlying conditions but was diagnosed with HF (EF 30) I am grateful to be on the four pillars, including the highest dose of Entresto. However, this morning I was looking forward to going to my sewing class. I walked the dog for an hour, prepared the veg for dinner, put washing and dishwasher on, mopped the kitchen and bathroom floor and took the rubbish out. . suddenly I came over really breathless and every muscle seemed to ache, my lower back and head too. I have had to come and lie down and cancel sewing class and I feel so frustrated. My plans are thwarted quite often. I just want to be back where I was before I went into hospital. I had HF then (albeit unbeknownst to me) but I had my active lifestyle. Nothing has changed except the diagnosis and meds ( which are supposed to be helping my condition) My husband is getting frustrated with me not being able to pull myself together as well. Is it the meds, me being a wimp, psychosomatic or the HF? I would really appreciate your advice here.

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Jackabee
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46 Replies
Gary221 profile image
Gary221

Hi Jackabee!

You sound like a similar personality to me! All this is so frustrating isn't it - especially when it impacts our day to day!

But, you're not a wimp! 69 years of experiences, you've got this far - and there's still some mileage left in you! It's finding a few adaptations to go the rest of the distance without too many problems.

I really sense that it would benefit you to have more support. Hopefully you can find it here online. If things are really seeming bad, the Samaritans are always available to talk things through with (Very proud to have been a volunteer once with them).

I'm a firm believer in "To help ourselves, we help others", have you considered local groups that maybe would benefit from your skills and abilities?

Organisations such as the RVS are great, Red Cross, local Food Banks, there's so many, and a young 69 year old would bring so much benefit. Equally, paying forwards will help you remember - you're not a wimp - you're a normal person who's experienced an abnormal event. No wonder you feel off piste slightly!

Keep strong! Keep talking!

Jackabee profile image
Jackabee in reply toGary221

thanks Gary. I always have and still do volunteer at least once a week for eight hours with school parties on trips to our local workhouse museum. My days are filled and I generally focus on the positive. I just can’t understand why I sometimes lack such energy or ache so much that I have to rest. I appreciate your reply.

Gary221 profile image
Gary221 in reply toJackabee

Yes, That really is a knock :-( Especially from being so active.

There's just so very many variables, and I'm sure you've looked at many options. Diet (Power foods), in addition to health service led guidance often has an impact.

I can well recommend trying to take your stats on a regular basis - things like Blood Pressure, SpO2, Pulse rate, and tracking them on a chart. Knowing your Blood Sugar is always good too.

This traditionally was the realm of the GP alone, now, it's easy to access kit that can help, and once you're familiar with how it all works, it can give indicators of what's not working as well as it should - which then impacts how you feel. Would you feel a little self exploration may help?

I sincerely hope you find a solution to this - never ever give up! (And tell hubby from me, he promised "For better or for worse", so he needs to adapt a little!

Jackabee profile image
Jackabee in reply toGary221

thank you once again Gary.

Etblue profile image
Etblue in reply toGary221

I don't think that you are a wimp. Far from it as it's difficult to adjust to a new pace and to think of your health when previously you just got on with things and packed a lot into your day.I am a bit apprehensive we with the cold weather on the horizon. For instance, do I need to stay indoors if it goes below freezing, or wrap up and brave the weather.

I live in Scotland and it can get very cold.

Dear Jackabee,

Wimp ? No, but human? yes

you suffer like the rest of us do, but maybe you didn't realise that and thought you were alone? well your not and many of us here are in this self demoralising club that none of us wanted to be apart of.

Your husband seriously needs to have a word with himself and begin to realise that his dear wife is doing the best she can during a very worrying time for her { that you by the way if he is reading this } but I secretly think that this is the way that he deals with this type of thing? why don't you ask him?

So this crippling feelings that you have, you have to remember that Im not medically trained but like many others on here I have also ventured down this path.

I seriously think that you are going through the difficult process of coming to terms with your diagnosis , my EF was -20% at the start and now is 65% at lot to do with the Entresto.

That and other drugs helped to bring my mood down as well so that is something you could chat to your heart team/Dr about.

Heart failure is just a heart that doesn't work as well as it should , we are going to be some of the last to be given this diagnose as it is so misleading and worrying that even Cardiologists are stopping using it.

My main message to you is that you are not alone, this will all balance out and hopefully soon you will regain your previous levels of life or certainly will be able to accept your new ones.

Please make sure you keep you Dr informed about the way you are feeling about it all.

We are here for you as long as you need us

Take care

Jackabee profile image
Jackabee in reply to

thank you Blue. I am trying to stay positive and I truly am grateful that I got treatment in time. I hope that I can come to acceptance soon. I just think that I should be trying harder but I can’t ! 😂

in reply toJackabee

Then you are trying the hardest you can, please let others help by letting them know.

Take care

RufusScamp profile image
RufusScamp

You are not a wimp. You are having to face up to an unpleasant situation like so many of us. We are all here to support you, and share our experiences.

Breesha profile image
Breesha

I presume your hubby is working full time, with tea break, lunch break Etc, maybe a little division of household chores would help, putting the rubbish out , walking the dog when he comes home or before work, you are just doing too much .

You need to slow down and start planning one or two tasks a day, and get hubby to help so you can both enjoy retirement when the time comes , forget the floors and Don your mop cap to tell future generations about the past…..

Jackabee profile image
Jackabee in reply toBreesha

thank you Breesha. He does his fair share but I am trying to do mine too…just not sure how much I am supposed to try and get on with it and how much I have to give in

Letsallhope1 profile image
Letsallhope1

Hello Jackabee,

You have been diagnosed with HF for a reason, there were warning signs which were confirmed by the diagnose, this is the obvious reason why you are unable to pack your day with strenuous activities.

I know changes like these are not easy but you must give yourself time to get used to the new you and slow down a bit.

Getting used to it mean physically (give time to the meds to help your heart work better which will take a few months), mentally accepting that something has changed in you and just cannot do all the things you used to do.

I’m 49 and I don’t do all the activities you do in 1 day.

I’ve learnt to pace myself and split my activities throughout the week. You will learn to know yourself, listen to your body and when you’re tired, allow yourself to rest, I find an early afternoon nap, even if only for 1/2 hour really helps me to regain my energy and strength.

Just one step at the time :-)

I’m sorry to be harsh but your husband need to get himself educated about what HF is and become more supportive and possibly help around a bit more around the house?

I wish you all the best, I truly do :-)

Jackabee profile image
Jackabee in reply toLetsallhope1

thank you so much. Your comments are really helpful. Yes, I just need to get used to the new me, don’t I? My husband does his fair share but he is getting used to the new me as well. I suspect he doesn’t want to know too much…fingers in ears and suchlike.

VelvetSky profile image
VelvetSky

Goodness, you are achieving so much, don’t put yourself down, it would take me three days to achieve what you manage in one morning.

Jackabee profile image
Jackabee in reply toVelvetSky

I think that I just have to learn not to feel bad when I can’t.

rizal profile image
rizal

Wimp? Really is that what you think? You are not being a wimp! Not in the least. Put that idea right out of your head.

Heart failure is a scary diagnosis to be given, mainly because of its name. It purely means your heart needs a bit of help pumping enough blood round your body for everything to do its job. You are on the best treatment, the four pillars, but even so, some days you are just going to have to listen to your body and put your feet up for a while.

That's part of the problem, you are still only 69 (I was in my 70s when I was diagnosed) you look to be in good health, so it is hard for your husband to see there is anything wrong and even harder for you to accept it without your mind going off on one about it.

You have HFrEF (Heart failure with reduced ejection fraction), it means your heart draws in enough blood each beat but pumps out less than it should. (A "normal" EF is about 50 -55%) My type is HFpEF (Heart failure with preserved ejection fraction) my heart draws in too little blood each beat so even though it pumps out the right fraction of it, that's still too little. So different causes, same effect.

The way I handled my diagnosis, nearly 18 months ago, was to find out all I could about the condition, then work out what I could do easily (without getting badly breathless) and slowly and carefully increase the exercise. A year ago this last August I found it hard just walking to the corner shop and back, almost literally just over the road, last month I was walking 5 miles a day. But somedays I have to just give up and have a day off. It was hard to get family to understand I am not being lazy but genuinely need downtime to recover. They do now and if they come visiting and see the kitchen floor not mopped or the beds not made, they can just accept it or do the good thing and do them for me.

Can I recommend some reading for you, pumpingmarvellous.org/commu...

Stuff there to help you understand our condition and how to cope with certain aspects

Jackabee profile image
Jackabee

thank you rizal. I appreciate your informative reply. I have to stop beating myself up when it doesn’t come together and give in to it don’t I? Find the balance between having a go and letting go . I feel as if I just had a tantrum with myself yesterday!

Pmj63 profile image
Pmj63

I think you must see a doc ..these don't seem like routine fatigue...is it medicine sifde effect? Better to get it checked up You could measure your BP oxygen and pulse rate at home if you those devices or smart phone or a mobile App ....it might help share the same with doc ...wish you good recovery ...you took good care in younger age and surely that will help faster recovery from.anything ...in fact consider yourself to be fortunate that till 69 you had a smooth healthy life..take care and slow down a little

jerry12953 profile image
jerry12953

Are you on Bisoprolol? That has a lot of strange and unpredictable side-effects for quite a few people. If so, ask your GP to substitute it with something else. All the best!

Jackabee profile image
Jackabee in reply tojerry12953

yes I am on Bisoprolol but only 2.5mg. It’s so difficult to get to see our doctor nowadays though and I have been released from the Cardiology team. I think it’s a case of put up and shut up now.

Worlebury profile image
Worlebury

Hi,STOP,take a deep breath,breathe.Now repeat "I am Not a wimp" I have been ill,and have a condition,which means,I need to learn to live with" repeat " I am not a wimp"You are a capable, fun loving caring energetic person, that has not changed,but how much you can do has!!. Relax the household standards,eat ready meals,chill,read,cherish yourself try to get out to the fresh air once a day.we are here for you.hugs wherever you are x

Jackabee profile image
Jackabee in reply toWorlebury

thank you…I am not a wimp 😁

Digger0 profile image
Digger0

You are not a wimp! I don't have HF but was diagnosed with a congenital hole in my heart 3 years ago at the great age of 68! From being an active archaeology digger, hill walker, open canoeist etc I ended up not being able to do 400 m with a slight slope without stopping. Not ideal when you live at the top of a hill in the Peak District! I was getting to the state of even looking up mobility scooters!! Luckily my husband has a wood working cellar so could go there to work off his energy/frustrations. Some nights he had to do the cooking etc. Luckily I had my ASD mended at the lovely Liverpool Heart and Chest hospital in August (overnight stay) and in 4 weeks I could do 7 km easily again. Do you have a contact number for your heart nurse you could chat to about your meds etc? 6 months is not over long for meds to settle down. Good luck.

Jackabee profile image
Jackabee in reply toDigger0

thank you Digger, I have been released from the Cardiology team into the care of my doctor who is difficult to contact. I think that you have all sorted me out. Greatly thankful for you all

wischo profile image
wischo

You are doing a lot and at 72 and an EF of 50% I would find it difficult to keep up with you. The medications are designed to slow you down but also to help you feel better. Rest assured you are doing fine and hopefully better when the medication really starts to work properly.

Familyk profile image
Familyk

HiYou are definitely not a wimp!!

I am in a similar situation to you. My EF is 32, I am only 53. I had no idea I had dilated cardiomyopathy until 4 weeks ago and it came as a huge shock. All my symptoms I put down to covid and the menopause. Alas no.

I have really struggled to stay positive, my journey has only just begun. They are trying medication at the moment and I am hoping to start on entresto once my gp agrees to fund it!

I have found my husband of 32 years is actually very scared. His fit and well wife has now become tired, low, and dependent on him. He hates not being able to change things, he wants me to be well and for us to be able to plan for the future, which is obviously difficult when we don't have any answers.

Maybe sit down with your hubby and have a real heart to heart with him. Men really struggle to talk and discuss their emotions.

If you need to talk please just message me as I really do understand how you are feeling.

Please try and stay positive. We can do this xxx

Philry profile image
Philry

It sounds like you need a new husband! If anyone is a wimp it's him because he can't cope unless you are mothering him.Perhaps you should ask him if that's why he married, and point out that real men do everything you do, on top of their jobs, etc,.

I think that you're being too hard on yourself, and the fact that you lasted so long before your health stopped you was just good luck.

Have a chat with your GP about how you are feeling, you and your situation, and as they will be best placed to say whether you need to slow down your pace to match your body's ability to cope

You should have a conversation with your husband about him taking on some of the things that you do for him.

I hope that this may be a short term setback for you, but you may need to accept that you can't do all the things that you used to do, now, and your husband should show he cares for you by taking on a few tasks.

I suffer from emphysema, ME, and other health conditions related to atherosclerosis, which means that I can't do nearly everything that I used to do, and it is hard to adapt to that.

I do hope that your husband cares enough for you that he stops being lazy, and selfish, by helping you out and being generally supportive.

You are definitely not the wimp in your household.

All the best for the future.

Jackabee profile image
Jackabee

Thank you Phylry, my husband does his fair share I promise but he just expects me to recover and get back to the old me which may not happen, may it?

boredom profile image
boredom in reply toJackabee

Same here hubby just wants the old me back so he says had to give up work cant go out much as i get so short of breath thinks its the meds I am on Ticalegor (spelling ) 1 of the side effects will be glad when I am off them. Some days so tired and low feel like giving up.

Jackabee profile image
Jackabee in reply toboredom

I am so sorry that you feel low. Be kind to yourself. Husbands sometimes can’t face change and so go into denial. You can’t see HF so it doesn’t exist to them. Hugs x

Crofton23 profile image
Crofton23

this makes me so sad to read your story. I have H/F and have had two heart attacks. I think most of us are in shock when we get a diagnosis and come home from hospital with loads of medication. I my opinion your husband is not helping the situation I think you need plenty of tender loving care. Pace yourself and give yourself plenty of me time to heal. X

Jackabee profile image
Jackabee

honestly, my husband is as helpful as he can be but he doesn’t quite understand what HF is. My post really wasn’t about him but about me. I just wanted to gauge how much I should be pushing myself and f it was usual to feel so exhausted by day to day activities that were no problem before.

LSCE profile image
LSCE

Hello,

You are no Wimp! Can I say that it sounds like you are just getting on with life. You have had shock news and it takes a long time to get used to and adjust. Sounds like you are trying to get on with life as before your diagnosis, like I tried to, not wanting this diagnosis to define you. Your attitude and positivity is admirable and an example to us all. However, I think you need to try a pace yourself. Think sewing class today so i'm not going to do too much else. Don't be harsh on yourself, it's not a sign of weakness, it is perhaps time to slow down a little. With the help of medication things may well improve and there will be a period of adjustment. I would say it's taken me nearly 2 years. Stay positive, always allow yourself the the energy to do things you enjoy. The household chores will always be there, spread over a few days and try not to fret about it not being done, easier said than done of course. Good Luck and stay in touch. There are always lovely people on here with experience and words of wisdom.

Jackabee profile image
Jackabee

thank you. I really appreciate all of the kind words that have come my way. You all have such worries yourselves but have taken the time to reassure me. X

boredom profile image
boredom in reply toJackabee

Start rehab on Thursday no cardiac nurse for months gone on long leave, so will be asking questions abouts meds GP useless said to stick with it but he doesnt realize what your going through either, cant even get in to see one Anxiety through the roof.

Jackabee profile image
Jackabee

sending love

Exie8 profile image
Exie8

You are not a wimp nor do you need to pull yourself together! You have had the fright of your life by being told that you have heart failure (an awful term!) and you and your husband need to come to terms with what this means for you both. In June 2020 my husband, then aged 71, suddenly and quite unexpectedly went into acute heart failure and after 4 weeks of intensive care underwent high risk surgery to replace two heart valves. He still has heart failure and has a fistful of pills to take every day. I know that he struggles some days and doesn't always tell me as he doesn't want to worry me but one thing we have learned over the past two years is that we need to be honest with each other and make the very most of our time together. These things can drive you apart but they can also bring you much closer together. Tell your husband about your worries because I am sure he is as anxious as you are though trying not to show it. My very best wishes to you both x

Flimflab profile image
Flimflab

Hi Jackabee, as the others haves said don't beat yourself up. You are doing far more than I do. I know when my mother had HF she tried to get back to normal too quickly.

I would suggest you speak to your GP, particularly about how they see how things may progress over time. My GP and the cardiac rehab team were helped me manage my expectations and pace my recovery appropriately. It also made it easier to speak to my wife about what to expect.

I see you have found it hard to get an appointment (even by phone?). I wonder if it would help to speak to the BHF cardiac nurse helpline? They are on 0300 330 3311 bhf.org.uk/informationsuppo....

Good luck

Jackabee profile image
Jackabee

thank you. That is very useful advice

Speedy6 profile image
Speedy6

Check your meds for side effects,can cause fatigue and breathlessness, maybe ask for a lower dose.it will be okay,heart failure.is not a death sentence it's about adjusting your meds to suit your needs.Speak with the Dr or heart nurse see if you can make any adjustments to them.Good luck.

Jackabee profile image
Jackabee

thank you

Lezzers profile image
Lezzers

Have you ever been referred to a heart failure nurse?

Jackabee profile image
Jackabee in reply toLezzers

I saw the community HF nurse once about six weeks after I came out of hospital and that was it. The nurses on the Cardiology team were lovely whilst getting me onto Entresto. Now though, I have been released back into GP care and see no one.

Lezzers profile image
Lezzers in reply toJackabee

Often, when you're discharged from the nurses care you can still phone them if you need advice etc. I'm not sure if you have already done so but I would be telling your GP about getting breathless, it may be simply a case of doing too much or maybe you're coming down with a virus or maybe it's just a case of pacing yourself but certainly get it checked out. You may be you need just a tweek to your meds. I would also enquire about possible counselling to help you cope with how you're feeling. I would also recommend looking at the Pumping Marvelous website & Facebook group, it's a patient led charity that is amazing for support, information and advice. Good luck

Andian profile image
Andian

As you are in Heart Failure may I suggest you have a look at Pumping Marvellous on Facebook. It’s helpful to hear how other people are feeling you will recognise then that you are in no way alone. It sounds as though you really must pace yourself, that was really a lot to pack into one day. I find it frustrating to plan what I’m going to do tomorrow and then find when I wake up it’s going to be a no-no. Be kind to yourself. Thinking of you.

Jackabee profile image
Jackabee in reply toAndian

thank you

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