Dealing with Chronic Illness

Hi @Onyx

I do agree with the fact that I will never be the person I once was. That my life will never be the same again. This is something that I have to accept. In a way I have, but there are many things that I haven't come to terms with. I guess I could say that we are all a work in progress.

Yes, others do have it worse, but that does not mean that your issues are any less hard to deal with. What you are going through deserves just as much support and help as anyone else.

It is hard having little support around us. I can understand that living rural limit's what we have access too. I live in a rural town too.

Even though we cannot connect via phone, please know that we are here for you. It might not be the same but it is something. It is a place to connect to others with similar experiences. It is a place to vent, to get those thoughts out of our head. To have some sort of relief.

Keep reaching out

Hi @Onyx, I had a bad result in December last year which drastically reduces the average survival rate. I had already had to adjust what my life now looked liked a nuber of times thatvyear due to sifferent treatments, each with a good, but not ideal result. So with that last result last December, it all just became too much and I just found it impossible to adjust again and so i went into a deep depression and now everything felt pointless and I just couldn't get out of that mindset of nothing was worth doing anymore and the anxiety of waiting for the next test result just got too much. I still have that every 3 months in the lead up to each test, but in the past couple of months i have began to feel able to accept this new 'normal' although I still struggle that this will eventually change again, and I dont know when.

It is so hard to have to keep adjusting while you're still trying to accept the loss of what life was back before. I found cancer support groups helpful, but it was the mental health support, like here and my men's group that really got me through. The physical issues I could get used to, as difficult as some of them were, but the mental ones constantly grinding away, were far harder.

The not knowing just how long yiu have until the next bad result or next problem to deal with... or even how long you have are just so difficult to learn to find enough acceptance of to at least live with it. It takes a long time and a lot of support. I know I couldn't have done it without that mental health support. Even then, its still so, so difficult and I dread the end of November coming up and the next blood test because i know im going to be a mess that week.

So keep reaching to find people to talk to about how you're coping and hopefully that will help you. I have been thinking of starting a new discussion here about coping with chronic illnesses. I haven't checked if there's one already..So if you think it would be helpful, im happy to do it and tag you in.

Hi @Onyx

sorry to hear your going through this

ive not long signed up for this just looking to talk to new people who may be having a tough time with various issues.

Ive not long been diagnosed with decompensated heart failure and various other issues i can say i know how you feel im also feeling the same.

If its any help im happy to chat with you just to have that extra ear for support you are not alone

Hey @itsmehuntre welcome!!

Just a lil tip, if you want other members to be notified that you've responded, you can tag them - use the @ symbol and a drop down will appear, and you can choose their name. If their name isn't there, you can type it out and it should then appear for you to select, then it will show up in blue, like this: @Onyx

@itsmehuntreWelcome to the group.

That sounds like a tough thing to deal with! Anything involving the heart must be scary. It's always that not knowing when and if something is going to happen again or worsen that is so difficult to deal with.

How are you dealing with it all?

Hi @MJG017

i got no idea how to use this place properly so please forgive my lack of knowledge.

Yes its scary and has changed me entirely as a person im not and never will be

the same.

Im not gonna lie im struggling hard but keeping that brave face for family and friends sake.

Im making the most of it considering the situation.

Scary how quick things can happen in the blink of a eye

No problem at all @itsmehuntre. You tagged me, so you know all you need to without getting fancy. It takes us all a little bit to get the hang of everything. It is a bit weird that the tag doesn't happen automatically when you reply.

Yep, it can change in a second and totally blindside you. I made a small joke to my GP at the end of a routine checkup and life just changed instantly.

I too struggles for so long and tried to put that brave face on. Eventually it just got too much for me and I had to take that brave face down for a while. A lot of people had disappeared right form the start, so admitting I was struggling so much made me fearful it would just make the remaining people leave as well. But eventually, I decided that if I can't be open and honest with anyone with everything going on, then they weren't much good to me. I still hold some stuff back... that brave face is still there to an extent, but it helped me a lot to at least feel safe enough to admit when I was really struggling.

Two years later, I have people around me who I know will support me and especially the past few months I've finally started to find myself it a better place mentally as a result. I'm probably one bad test result from going back to 10 months ago but I can finally feel like I can do things with the life I have at the moment and have made some very positive changes. It gets me through the days now without just waiting for each day to be over so that I can get then next one over with, and the one after that.....

So my advice would be to let down that brave face when you need to. It just becomes too much after a while. I'm always happy to chat about any of this, especially if you feel it would help.