Hi there. I’ve joined this group because I have Cystic Fibrosis I’m 33 this year and to put it bluntly i don’t know how long I have left. Basically I don’t get the support I need from family members and my husband and I can’t have the conversations because he doesn’t cope with it at all and he’s in denial I think and that’s completely OK… I have a 6 year old daughter who is autistic and is a rainbow and miracle baby.
I suffer from PTSD after nearly losing my battle 3 years ago and severe clinical depression and anxiety that I’ve had since I was 18.
I’m really struggling with it and I have no one to turn to or talk to about it. So I decided it was time to talk and not hold things in.
I did a story once about people with this affliction surfing in California which seemed to aid the condition.
I am sorry you don’t get the support you need. I think we have all had family members like that.
As you are in the U.K., can you contact the Samaritans? Mental health counseling benefitted me greatly. The counselors are trained to be kind and understanding. Maybe you need some one-on-one kindness.
You face a lot. Professionals will understand the magnitude and they will respond accordingly.
@Mummymoon - hello there. Thank you for posting and for joining us on here. I have been through terminal illness, in my case with my husband. Those conversations you mention are so important. We didn’t have them as we didn’t know how or that time was running out as fast as it was. Your local hospice should be able to help - they should provide many services around care for those facing life-limiting illness. Also, I can recommend Kathryn Mannix’s books - “With The End in Mind” and “Listen”. I am not sure if any of this is useful, but know you have friends on this site who care about you and are here to help if we can.
Hello @Mummymoon, I am so sorry you’re not getting the support you need. Thank you for reaching out here. I can see you’ve gotten some good advice from @berit and @Vancouver, but I just wanted to share this forum which you might be interested in joining too:
It’s based in America but there are people from across the world there.
I hope you find our community to be a support too - keep reaching out.
Hi there, thank you so much for replying and i apologise for the late reply as im currently in hospital at the moment.
I wish i got the support too, it would be so nice to have someone sat beside me just to hold me and tell everything is going to be ok. I struggle when i see all the other patients having there familys come and spend time with them. Helping them through.
I do have a psychologist here who i speak to on a regular basis and that does help but i feel sometimes she doesnt have the experience to understand me fully if that makes sense
hello @Mummymoon - I hope things are ok in the hospital - I know the NHS is under so much pressure at the moment and I hope you are getting the care you need as you need it. It sounds as though you need practical advice on what to do, what to plan, how to prepare. You were wondering about end of life conversations and all of that, too. I wonder if it would be worth seeing if you could speak to someone from the palliative care team about where and how to make a start. With the right advice and someone walking with you as you go through this, I am sure it will be ok. Keep posting - we are here and we are with you.
Well back in 2019 i very nearly came to the end of my time here. Leaving my husband and 3 year old then behind. I had already made some decisions and almost came to the point of telling my husband i dint think i was going to make it. But then i was given a miracle and a new treatment was given to me whilst in its trial stages and i was the second poorliest cf patient in the uk to recieve it on compassionate use. As normally it was guven to those with a lung function of 30% and higher, whilst i was at 12%. Within 48 hours my lung function had doubled and i was flung back into life again. My body lept for it but my mind atayed stuck in the motions of me dying and everything i would lose. I started having visons/hallucinations of it and seeing my family for the last time. This caused sevre anxiety attacks depression and huge on set of PTSD whenever i was reminded of it which was every single day. I had made end of lufe care plans, picked my coffin, my music. Wrote letters all causing me severe pain in my living life ( my way of describing life now). Now 3 years on im alot better in that respect i had cognitive therapy and im on the correct medications to skewp my amygdala under control.
But…
I still have Cystic Fibrosis. I know im still going to die. Its an inevitable fate that i know one day i wont be able to deny or fight. And the weight of everyday crushes my spirit thinking how long have i got.
If it was just me, alone being completely honest with myself, i dont think id be as frightened. But leaving them… it kills me.
It kills me everytime she smiles or laughs. Whenever he makes me smile or when i hold him and he holds me. I grieve for them
And i grieve for the future that ill only be a memory in. And i just dont know how to just be at peace with it. It just seems impossible but its making my life a misery and clouding the memories im trying to make. Because there just so much pain behind them. And because i have no one but myslef to express it too a shroud of battling this alone starts to creep on me and i just dont know what to do with it.
Thank you all so much for your beautiful kind. Its why i came here. I didnt know what else to do…x
Hello @Mummymoon - I am sending you loads of love x I think you are experiencing something called anticipatory grief - it comes when one knows someone special is dying or going to leave. There is help out there - see https://www.choosingtherapy.com/anticipatory-grief/ for some ideas, perhaps or have a chat with the medics or Sue Ryder about getting some support. You are not on your own in this, my friend. Your wingmen and women on here have got you x
I am SO sorry. I’m sitting over here in America sending deep sympathy to you.
I have a terrible time without loved ones. I have no terminal illness but I fight daily for mental health. But all you can do is be with them as a much as possible. What else can one do when Life is in control.
We have that saying, Let Go, Let God, or whatever you might believe in. I have to push aside dark thoughts all day like fly swatting.
