Serious coping....

Did your DR. ask you if you had...

by USMC-Pacer - 2024-02-22 16:13:47

..SOB, dizziness, fainting, anything? "If it hurts, stop doing it" is great if we are talking about a knee or a shoulder, not your heart! 

I agree with you that we all need folks to talk to and it is helpful. I'm thankful for this site right here as it is full of people that know where you are coming from.

I think progress is also helpful to us as well to help bail us out of this depression or hopelessness. 

I'm hoping for you that your higher dose of carvedilol will help you. My guess, and it's only a guess because I don't know is that your DR. thinks it will help either relax your heart some, or mitigate any irregular rhythms which can reduce and/or eliminate any CRT response. God Bless

Therapy

by Lavender - 2024-02-22 19:07:29

A friend of mine lives almost two hours from a therapist. However he set it up that he only has to see them in person a couple of times a year. He's on medicaid/medicare. The other visits are all done by phone. So I know it's possible to get therapy either online or like he does it. 

Talking to others and listening to others is supportive but can't match what a professional can offer in terms of therapy and/or medication. I get it that you are not open to seeing a professional and that's your choice. I wonder if you have tried that route at all before saying it's not feasible. 

Sometimes action needs to be taken. If you choose that what works best for you is talking about the problem and listening to others-so be it. But, you might find that friends and people close to you run out of comforting words to say. They may not be able to handle the ups and downs like a professional can.  

People in a group like this do understand. You can look at the "views " on your post and know that you are heard. But don't just shut the door on professional therapy until you have given it a chance.  Acceptance therapy helps too. You can read about it online. If you're determined not to seek professional help, and this is the only source of support you're comfortable with, then it's working for you. 

Your situation is definitely a difficult one that would challenge anyone. I'm seeing some progress in reading your posts and you're getting a lot of support and insight from some members. I hope your increased med dose helps too. 

You are doing everything possible to help yourself

by Gemita - 2024-02-23 06:47:02

Janene, 

Thank you for your encouraging post and offer of help.  We all need a helping hand sometimes and to know that members here really do understand what some of us have to bear.  There are times when a support group like this is all that we need.  I know it was for me.

While I found Cognitive Behavioural Therapy helpful, there finally came a point when I knew that however much I needed to unload, I had to stop talking and thinking about my difficulties and just find a way to get on with my life.  My hand couldn’t be held for ever.  As someone who has always been in touch with her “inner self”, I knew what had to be done, many of us do.  From your posts, I believe you too hold the key to helping yourself.  You are an exceptionally strong willed, strong minded person and your heart failure will not have an easy time with you.  I have a sense that you are firmly in control and continuously observing how best to manage your symptoms.

From reading your posts, you appear to know yourself well enough Janene and I have never read your messages as a cry for help.  You have always come across as wanting to know the truth and as being able to “face the truth”.  You have clearly come to terms with your diagnosis, now perhaps you need to find better ways to “manage” your illness from a medical point of view and from a practical one too so that you do not feel so restricted in your daily activities.  

On a practical level coping with any illness, we need to learn to “pace” ourselves as we carry out our usual daily activities, not to do too much today and nothing tomorrow.  We need to build strength slowly, consistently for best results.   This means breaking down our activities into more manageable chunks, so that we can feel as though we are achieving something little each day.  We need to recognise too how our actions influence our thoughts and emotions and to spend more time doing activities that bring real enjoyment and I know you are already doing this most effectively through your love of nature.  

On a medical level, there is so much to learn about your particular form of heart failure, what triggered it, what sustains it, what could possibly treat it more effectively?  I will never stop learning what more I can do to help myself and I suspect, nor will you, but as in many aspects of life, it can be trial and error to see what might work best.  I know that doesn't sound very secure, does it, but it can be an effective treatment for any chronic condition. 

Thank you for allowing me to take a small peep into your life.  I have learnt a great deal from your strength of mind and character and I have every confidence that you will find the best way forward xx

distance theraphy

by new to pace.... - 2024-02-23 16:43:10

there are some therapist who will do a Zoom call with you.  that is a better way as it is face to face.

new to pace

No Pressure

by Penguin - 2024-02-23 17:55:55

 There’s no point in going to therapy if you don’t want to be there.  You don’t have to see a therapist. Lots of people choose not to. No pressure.  

Your doctors seem to be asking you to self manage by listening to your heart when it sends out signals that it isn’t coping and to rest / stop. That’s good advice but when the bar is set so low and you get symptoms so easily, it’s hard to accept your limits isn't it? 

I can’t magic anything up for you, but I really do feel for you. I’m around your age and have been paced for approx 15 years. It was a real blow to me too. I tried to fight my way back to better health. I didn’t give myself much of a break! I tackled things head on. Not always the best way!

I should probably chivy you along, and tell you that everything will be fine, but how you feel today is what matters and if you are feeling despondent, perhaps it's better to own how you feel and for others to admit that they’ve been there too. I certainly have. You’re not alone Janene and although that won’t take the chest pain away I hope it warms your heart up a bit tonight. Please look after yourself and believe in the restorative power of rest and sleep.  Things have got to improve and if you can take your foot off the pedal for a while, perhaps they will - I certainly hope so. xxx 

Good Help is accessible in Remote locations

by Andiek11 - 2024-02-23 18:41:55

There are definintely ways for you  or anyone to access good quality mental health care remotely via telebehavioral health programs.  I've worked for several of them as a therapist. Most are legit and can be a godsend to folks in rural / remote locations.  For these programs at a minimum, you need a reliable phone line.  Ideally, access to the internet so you can have video sessions.  Many of these programs accept a wide variety of insurance payors, including Medicare and Medicad in some areas, but they also have pretty affordable "cash" options for those who need or prefer.  I'm new to this forum so not very familiar with the various communication options, but if there is a way for us to chat directly, I'm happy to share resources with which I'm familiar.