Needing company from others going through similar.

[OneOfTheGrundys]

DH has had a diagnosis of a life limiting heart condition.
It may be manageable but it’s not curable.
I only want to be around people who are also going through illness, either themselves or as carers.
Is this weird?
I can’t find a place for myself. I don’t fit on cancer threads but there’s nowhere else either. It doesn’t have to be illness specific, I just want to feel that what we are going through others are too. I don’t want to feel like the pitied one iykwim. This is our new normal, however hard it may be. I only want to be with others who get that.

Not weird at all. Totally understandable in fact.
Can your dh's consultant's secretary, or nurse specialist not put you in touch with others in the same position ?

Or is the a Googlable support group for the condition ?

Or would someone like the BHF be able to signpost you ?

It’s hard as e still don’t know what’s caused it. It’s really rare, whatever it is.
We cope each day just about but it’s when friends come over or call that you get a reminder of the outside world and it does us in all over again. Feel so much happier in hospital than out amongst normal people leading normal lives.

Hi sorry you are living with this. My husband has an extremely rare degenerative condition that impacts every area of our life. No one really gets it, probably because I don't describe it well as it is to very bleak.
Our future is suddenly very uncertain, the only certainty is things will get worse
I try to be positive and enjoy the here and now, but sometimes it hits me like a wall
tough, so very tough. Sending some kind thoughts and understanding your way. x

Hi Pananny .
Yes, it’s the way it just hits you suddenly. The pressure to enjoy the moment is so great... you are right. I know that if he doesn’t live long he should live well but it’s really hard when that darkness and despair is just around the corner.
Does your DH have many friends? Are you able to work or be away from the situation at all to give yourself a break? How long have you lived with his condition?
Thank you for your story. It means a lot to know we are not alone.

Us too. DH has incurable cancer and it’s horrible. I’m having counselling to deal with the rug being pulled under our feet. The worst thing is that the future is so uncertain. Will we be dealing with this for years? Months? Weeks?. The key for us has been getting him under the absolute best doctor for his condition and just cracking on with life as best we can and doing all the things we always do. He’s not ill on himself yet and is still working but I’m very scared of what will come in time

I should add that I also work. I would never give that up because it’s a) my time away from the sh*t and b) it’s vitally important that I have it in my life for the future.

Hi Yvest .
That is good to hear about your work. I have to keep mine up for myself and our DC. They are 9 and 11.
How long have you had the diagnosis for? We have been called in at 2 tomorrow. Face to face news is never good. The boys are being picked up by my in laws in the morning so we can have a little time together afterwards.
I just keep thinking “I’m walking through hell. I have to keep walking.”

We have known a few months but haven’t shared it except amongst our closest friends. Family know the prognosis but we haven’t told anyone else. I am working very hard at accepting that all our dreams for the future have been snatched away from us but at the same time being mindful that we are living in today so all things carry on, play dates, parties, going out with close friends. I’ve also distanced myself from our wider circle, I can’t deal with it at the moment.

I totally understand how you feel. Sometime I feel I can deal with anything and other times I’m just petrified for what might come

You describe that tension between the awful pain of the situation with managing the everyday so well. I find a lot of that balance tends to focus on our DSs. Everyone wants to take them out, away from the family but I find they help as I can’t just stay curled into a ball and cry when they’re around.
You mentioned play dates so I guess you have DC?
I actually hurt tonight. My stomach, my neck and shoulders actually hurt with the emotional pain.

I find having the children around really comforting. Dealing with their day to day stuff helps me to understand that what we are going through is a horrible part of their lives but it’s not their whole life and I see part of my role is about helping them to build the foundations so that they can eventually move forward. Never in my wildest nightmares did I think I would be dealing with this scenario at this point in my life but I am, I’m not the first, I won’t be the last and I am trying to deal with it the best I can. But omg, it’s truly shit, there are no other words

Yes-it’s never what you expect, is it?

I really want to get this ‘right’ for my boys. I lost my dad to a brain tumour when I was 13 and I’m acutely aware of how much his illness damaged me. Children are resilient, yes, but I think they also carry damage with them into adulthood if what they experience isn’t handled well. I want them to have the help they need but I don’t know where to turn for it.

We are in the first stages of this awful journey but DS1 is absolutely adamant that he wants ‘normality’ back. It’s been hard this week as their schools been shut with snow and we’ve all gone a bit stir crazy but I hope next weeks better.
DS1 did get his first choice of secondary today though. It’s a lovely school, the only bright bit in a long time.
Thank you for talking to me Yvest it helps so much.

I’m trying to handle it best I can and have taken advice from a charity I’m getting counselling through. As the current treatment is just some pills we haven’t spoken to our younger children. The eldest knows his dad has cancer which can be treated but not cured and that he will always have to have treatment. He doesn’t know the likely outcome because well, maybe it’s years away and we will discuss it with him when we feel the time is right. We will start to give more info to the younger ones in time. The most important thing I’ve learnt is that there’s no rush to do anything, we take time to think through things before we share information.

DS1 doesn’t want any professional support at the moment but I’ve got lots of contacts for all of them when we need it

In terms of the children, I’ve started talking to DS1 about how family is not just our family but our wider family (we are v close, and a big family) and how strong relationships with them are so important and special. It’s to start to build them a strong wider network that they can lean on.

Great news on the school though!

We have just sent the boys to my in laws and my eldest didn’t want to go.
But they need to get away from this situation.
I feel really sick today.

OP - sorry your family is going through this nightmare.

It might be worth posting in Relationships as General Health isn't a very busy board.

Hope you find the support you're seeking

I might message hq for the best place you are right.
It is less of a medical thing more of a carers thing.

Op have you tried to find a Facebook Group with your oh’s condition? Most have relatives on them not just people suffer off themselves. It’s very hard to be a carer. How did his app go today?

Hi again.
I don’t have fb but have joined now and am hoping for a tutorial from a friend!
Struggling today, badly. Waiting for the next appointment as the last one was basically to tell us we were being referred.
My DS2 has just sort of processed it now and can’t stop crying. I’m so sad today.