Not a good day: Been very up and down... - British Heart Fou...

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Not a good day

Hrty profile image
Hrty
29 Replies

Been very up and down lately. My recovery from my NSTEMI last November was going pretty well up till beginning of June. Was almost back to normal, well normal for me, and then I had an episode at rehab where I felt very giddy and my BP plummeted. After that it was chest pain on decreasing levels of exertion, trips to hospital, changes in meds and another angiogram in July. Been told I'm ok, 100% blockage in branch artery but main ones nice and clear. Apparently the complete blockage is a good thing and I should no longer have any pain and I'm now "fixed"Trouble is I don't feel fixed and my confidence has fallen through the floor. Back in May I could walk 10-12km, now I can barely manage 1. I get so anxious before doing anything as I'm scared I'll trigger another episode. GP has referred me to MIND for face to face but waiting on that atm. Just started on a different statin to see if that helps with some of the fatigue, nausea and musle aches and pains. Also got a blood test this Friday to check Iron, B12, VitD and thyroid.

Sorry for long post just needed to get things off my chest. Truth be told I'm funding the emotional/mental side of recovery the hardest, especially as everything was going so well before my "blip". Just so fed up at the moment

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Hrty
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29 Replies
Yumz199725 profile image
Yumz199725

Ahh mate it's understandable you feel so down you have been through a lot it's bound to affect you mentally and emotionally 💔😕. Hope the appointment with MIND goes well and if your iron and vitD levels are a bit low that would explain how you have been feeling aswell. Wish you all the best for your appointments and hope tomorrow is a better day! ❤️

Hrty profile image
Hrty in reply toYumz199725

Thanks, hopefully the Mind sessions will help when they start. At the moment life feels a bit rubbish, I know that compared to many I'm ok. Just wish I could convince my head that that is indeed the case.

Tos92 profile image
Tos92

I’m sorry you’re experiencing this Hrty . I can definitely relate to the “scared I’ll trigger another episode”. I still feel like I’m in that mindset, despite my heart attack being last year which has caused me to gain a bit of weight.

Can I ask why they chose not to intervene surgically with the 100% blockage? Are they allowing time to see if the medication will work?

MIND sounds like a great idea. I hope the wait isn’t too long.

Tos

Hrty profile image
Hrty in reply toTos92

Thanks, they weren't keen to intervene when it was first identified as partially blocked owing to the position of the blockage in the branch artery. The narrowness of this artery would have been tricky but also had the potential to compromise the healthy main one. Apparently the heart will work round the blockages with collaterals., etc.

MummaSoap profile image
MummaSoap

Oh Hrty, I really feel for you and I empathise.

I too seemed to be coming to terms with my heart condition and starting to get a bit more freedom and finding my flow.

Since January, when I returned to.I’ve been finding it hard to get a balance and the fatigue is unreal! Thank goodness I work from home otherwise I think I would’ve fallen asleep at the wheel!!

A referral to MIND seems like a wise decision and I really hope you don’t have to wait too long. I’m currently waiting for counselling and the waiting list is 6 months; I just hope I can ride it out until then because I can’t afford to pay for these expensive services even if they are quicker.

Be kind to yourself, it wasn’t that long ago and it’s going to take a bit of time for you to regain your confidence and find your groove again.

Wish we could be as patient with ourselves as we are with one another 😂🙈 I’m terrible for being hard on myself and just wanting to feel better already!

You’re not alone, thinking of you.

Best wishes

Soap 🧼

Hrty profile image
Hrty in reply toMummaSoap

Thanks, hope you get your counselling soon. I have to admit to considering going private. Not so much in that I don't trust the cardiology dept but more being to sit down with someone to explain everything to me fully.

MummaSoap profile image
MummaSoap in reply toHrty

Thank you, I really appreciate it.

Yes time really isn’t in abundance lately; I don’t have anything against my cardiologist but the delays with appointments I do find anxiety inducing.

Also, my children are no longer babies and time waits for no one - I don’t want to miss out on making memories because I can’t get my symptoms investigated quickly enough.

Plus my partner just doesn’t get it and his attitude is basically “aren’t you over it already?” As if my favourite crisps got discontinued or something (I know, I know - I love crisps though 🤣 ). Just wish he had a bit more empathy and patience!

Do you think a call to the BHF Nurse line could be beneficial - I know it’s not the same as having someone with all your notes and history in front of them but it might help for reassurance around getting back to “normal”?

Hrty profile image
Hrty in reply toMummaSoap

Luckily my wife has been brilliant although I can see it getting her down at times.Fully get what you are saying about missing out on things. We have a 21mth old grandaughter and I want tobe ably to fully enjoy her growing up.

RoryDude profile image
RoryDude

Hello. This mirrors my own recent experience. I’d improved for about five months after my heart attack/stent. I was able to walk twice a day, despite sleeping in between. Then ended up in hospital. Medication has been changed six times. I’ve got a distal blockage in LAD (after 100% blockage on the day of the heart attack) and akinetic walls. Ejection fraction decreased after a small improvement initially.

The most debilitating aspect is the constant fatigue. I’m back at work full time but that zaps all my energy and I have no life outside it.

I hope things get better for you. Keep talking and seeking help.

Rory

Hrty profile image
Hrty in reply toRoryDude

Oh God, the tiredness. Even after a good night's sleep I'm shattered the next day. It's so frustrating. Pre heart attack I was swimming 2-3km 3 times a week, working in the allotment and enjoying long walks. That was starting to come back until end of May and the rehab episode.Hope things improve for you too.

Heyjude31 profile image
Heyjude31

Hi Hrty,

I do hope that MIND will be able to help you. I am nearly 2 years post bypass surgery and I still get ups and downs with my mental health. It does get better but it seems it is harder sometime to recover mentally than physically. Be kind to yourself you will get there ☺️

Blearyeyed profile image
Blearyeyed

So sorry Hrty, please keep posting as often as you need I'm sure plenty of us understand what you are going through .MIND should be helpful but there are also other online support groups and courses that could be of use while you wait to give you some of the introductory CBT tools to help you control those really normal anxious feelings about trying activities after a setback or health event.

I found trying really little things after I'd done some sort of activity that was more mental or uplifting to distract my worries and make me feel positive in general helped. I have had many setbacks , not just from cardiac problems. Sometimes it feels like it's one step forward and four steps back.

The annoying thing is when a new illness or symptom starts because you haven't got over that obstacle before you feel nervous all over again when building back new things.

The one thing you will discover is that you get braver and more confident after each time you do a thing and it doesn't trigger an episode.

It's actually worth keeping a diary of those Positive moments as a reminder of how well you are doing overall on the slower , sadder days.

All I can say is you will get there , keep trying , keep talking , because being able to speak your worries out loud makes it easier. Go slow , go small and don't beat yourself for not being further forward than you are , oat yourself on the back instead for how far you've already come, hugs , Bee

Hrty profile image
Hrty in reply toBlearyeyed

Thanks, I almost always do feel a bit better after doing something positive but the biggest problem at times is overcoming the fear and anxiety beforehand. Recently we went out to buy a new mower and strimmer as my wife finds the petrol ones we have too heavy. I even managed going to a cafe to ponder our decision. . Last week I went to a workshop with a local artist and other residents to discuss a mural that will be painted under a local railway bridge. Got quite anxious before although I really enjoyed it.

Yesterday though my wife and I wnt for a short walk and my anxiety levels went through the roof. So much so I cut it short and then struggled to settle /relax afterwards.☹

Bingo88 profile image
Bingo88

Good morning Hrty. No need to apologise for the long post. Life is difficult at times I know how you feel. Something knocks us back at times and it's hard getting back to where we were and then something else comes along to knock us down again. Hope the new meds work and you get your confidence and belief back. Hope today goes better. Brian

Hrty profile image
Hrty in reply toBingo88

Thanks.

Liss-x30 profile image
Liss-x30

Hi Hrty,

I am so sorry to hear you are struggling, the mental side of life with pain and drugs is so difficult! I can empathise with being told you are "fine" when you know in your body that something is wrong and you have to keep fighting with doctors is so exhausting.

I don't really know what to say other than just take everything day by day and try not to put any pressure on yourself, you are doing amazingly. Even if you can manage a small walk, thats still so good considering everything you are going through so keep going.

Hope things get better

Liss

Hrty profile image
Hrty in reply toLiss-x30

Thanks, I really do think deep down I know I'm "ok" but after this latest setback my head wont come to terms with things fully.

SaxoBill profile image
SaxoBill

Hi Hrty I'm in exactly same position. HA in Jan. 1st 2 months terrible then things improved. 3 weeks ago I thought I was back to normal then overdid a run and back in A@E. Week later went for walk and back in A @E. Anxiety and panic through the roof. Now trying to build back. What helps me I too keep a daily diary and try to record achievements, I have a hobby that takes my attention and I never feel anxious while doing it,(play saxophone), I walk and always listen to music to distract myself and I've just started a meditation app. Having a routine got me to a good place before and I'm starting again. I tell myself if I did it once I can do it again. I've also got the most fantastic partner who listens and reminds me of the positive things and the things that haven't gone wrong. Hopefully you have someone you can talk to. Good luck.

Hrty profile image
Hrty in reply toSaxoBill

Thanks. I do try and distract myself by playing guitar, I have a lesson this afternoon, doing family tree research, reading and listening to music but it seems very hard at times when the anxiety builds. I miss swimming , long walks and doing anything more than just potterring in the garden or allotment.

My wife is and has been amazing and I hate seeing her upset when I feel down.

I will have to try the diary but focus on the positives and try to avoid dwelling on the negatives.

Thanks again. All the best with your recovery too.

momander profile image
momander

Hi,Suffering from anxiety isnt easy but health anxiety is really quite difficult. Having any problem with.our hearts makes us question.everything!! Our longevity for a start!! I've had unfortunate heart problems since 2021 ( genetic on my mums side) I had my first heart attack in 2021 where i had a stent fitted. Another in in 2022, another stent. Then again in Jan of this year where I had a double bypass. I have had many many dark days, black thoughts and just feelings that I would never be the same again!! 7 months on and I AM me!! I just think and behave differently. I focus in the positives and disregard the negatives!! Anything that causes me stress isn't welcome in my life now. I would almost go as far as to say that my heart problems have made me sit and face a lot of things that were not right with my life, and I would never have done this had I not been so unwell. I don't smoke or drink at all now ( which I so loved ) but I never give it a seconds thought!! I've recently had my gallbladder out and it was a particularly difficult operation. I have completely overhauled my diet and lost a lot of weight. Right now I am slowly recovering but am in a lot of pain. Its so easy to go.back to that dark place but I owe it to myself and everyone who has worked hard to have me here today, not to!! I've been given a second chance at life and i intend to use it and give thanks every single day. I can promise you that things WILL get better It all takes time. Try to keep thinking of ALL the positive things you have going on, and there will be many!! Look after yourself and just allow things to happen slowly and in their own time. Don't set huge goals or compare yourself to others, ( or even your old self). You will get there. Baby steps. Xx

Hrty profile image
Hrty in reply tomomander

Thank you, had a very quiet day today just chilling round the house. On the whole not too bad a day although did have a bit of an anxiety blip about an hour ago.

LSCE profile image
LSCE

Hi, No apologies necessary. Totally understandable and can relate to your emotions and anxiety. From my own experience, it can take a long time to come to terms and live with not only the physical changes to health but the impact on our mental health and well being. More so when you have ongoing problems. It may take a while for the cardiologists to get your meds right. It's taken me 2years to really feel relaxed about my health issues and just get on with life, I hope for you it's less time. I,ve got used to the new norm. Take what ever help is offered. Lots of support on here too. Sometimes just writing and talking about your feelings and concerns can help. Wishing you well.

Hrty profile image
Hrty in reply toLSCE

Thanks, I was doing really well until a few months ago which is, I think, why this blip has set me back so much at times. I was coming to terms with what had happened last November. Talking it through on here has helped massively so a big thank you to everyone who responded.

Metal_lady profile image
Metal_lady

Bless you. I'm so sorry your feeling down. It's entirely normal to feel like this. Depression post heart or stroke illness is unfortunately a normal response and upsetting if you've had only minor blips mood / mental health wise and shaken them off. It's not often talked about. Do not minimise what has happened to you. Both you and your body have had a major shock. The mind is a powerful but sensitive organ. Unfortunately once you experience anxiety, even though it's entirely normal, it's remembered. Partly to protect you. Maybe Google Fight and Flight response. Hopefully that may reassure you. It's a hangover from us being cavemen and needing adrenaline and muscles ready to run. But you can break that response with practice. Breathing control. More notice of external environment to take your brain out of fear into control. The 5 senses is a new way of taking control. Basically 5 consciously say 5 things you can hear, see, smell, taste and touch as it grounds you. Learning relaxation is a good one too as you learn how to control your breathing, which you can do then when the 'butterflies' start. I'm a lifelong anxiety sufferer, plus depression and cptsd. I have Tachycardia, was told I had Atrial Fibrillation for 3 weeks. My anxiety wasn't good. But it's all a bit embarrassing for me, as I was from 18 to 50, a qualified psychiatric nurse. While you're in touch with your rehab team, do they know of any support groups? Have you got a smart phone? Headspace is a good App for mindfulness and relaxation. It's all about taking control of your mind; you are strong and stronger, you've survived! I'm not usually keen on this term, but you're a warrior. You can do this, you will do this. Don't be a perfectionist or try and run before you can walk. Take time, take time to heal. Learn about what you have, what you can and can't do? What's changed v what hasn't? How do you feel about it? What do you want now? You are a participant and instigator of your recovery in partnership with your Dr's. You now have Lived Experience. Use it. Start a support group for people recovering like you, eventually. Also Google Kubler-Ross stages of Grief. You have to grieve to move on. Any life changing event like divorce, major illness etc is Grief. As long as you don't stay stuck in one stage, you can go backwards and forwards through them, but you have to go through them. Cry too. I would, I have. It helps. Also don't engage in any I shouldn't feel like this there's people worse off. That's negative and at the moment, it's all about you and what you can do. Don't negatively stress yourself about what you were doing in May. You've had a blip. You can regroup and build back.Hope this helps. Sorry for the novel.

Hrty profile image
Hrty in reply toMetal_lady

Thanks for this, it'll take me a while to take all that in but definitely some good stuff to consider

Metal_lady profile image
Metal_lady in reply toHrty

No worries. Remember Rome wasn't built in a day. Take it steady.

cappachina profile image
cappachina

Sorry to hear that Hopefully some counselling will help and your blood tests are clear Getting well seems to be be two steps forward and one back for all of us. I hope tomorrow is a better day for you .

Hrty profile image
Hrty in reply tocappachina

Thanks, hopefully the Mind sessions will come through soon. Bizarrely I almost hope the blood tests show up something that then can be treated. The constant tiredness is one of the big downers at the moment.

cappachina profile image
cappachina in reply toHrty

Before I had my aortic valve replaced I was like that so I know how you feel . It's exhaustion like you have never had before

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