Partner with long term illness

[Sootbird]

I feel very alone. I'm not a carer as such, but at the same time I watch him in pain so so much. I don't know anyone in a similar situation and I feel like I am whinging to my friends too much. I just want to know how other people cope, seeing the one they love in pain, knowing you can't fix it, the frustration of medical professionals being vague, not seeing any light at the end of the tunnel...

I can't be the only one on here with a partner with a chronic illness can I?

[ghostinthecanvas]

and a wee bump.

[Sootbird]

Thank you

[Innocentbystander01]

My dp has a chronic illness it's very very hard. Our life's have changed so much in 3 years. For example he worked since he was 14 now he stays home and I have 2 jobs.
He gets very frustrated and angry some days and I hate to say it sometimes so do I.
If you ever want to vent or need a friend pm me x

[Sootbird]

It's three years for us too. At the moment neither of us can work (long government story), but as soon as we can it will be me working and juggling child care on the days he's not well enough to take over.

I am so relieved that you said about getting angry. I feel so guilty when I do, I am not the one in pain, I am not the one who lost my career, I have no right to be angry but I end up angry at the world, and sometimes at him even though I know it isn't his fault.

[howabout]

Hi I have only recently come back to MN so sorry for not responding sooner. I have DH with MS. He has had it for over 20 years with increasing levels of disability. We have had a long time to adapt and it is not easy. I am a carer as such and I think so are you. IME caring for a partner is different from caring for a parent or child as your primary emotional support is also the person you care for. The other difference is that unlike in other situations you are financially interdependent. The hardest thing for me to explain to others is that a lot of the time my caring is about letting DH struggle on to maintain his independence and being there almost invisibly supporting when necessary.

I can recommend a book called "The Selfish Pig's Guide to Caring" which is a no holds barred reflection on your situation written by a long term partner / carer.

[Slartibartfarst]

This is going to sound so selfish, but does anyone else struggle when they are ill themselves and in need of some tlc? My partner has a long term illness and I feel like I can't ever need anything, be exhausted or be ill myself. (Have flu at the moment after spending the week before looking after our poorly two year old and not sleeping much) and feeling a bit sorry for myself.
I also found it really hard when I was heavily pregnant and it coincided with him having an acute episode of his illness and being very ill an exhausted too.

[jojotunny]

My partner of 23 years was told last year he had 3 months to live 12 months later he is still with us and his lung condition is now under control with lots and lots of meds and oxygen machine and tanks around the house , it's very very difficult for me as iv just lost my mum also and became very depressed , but I have to keep going as we have 2 children he's been poorly for about 5 years now and I spend every second of every day with him I just want to make his life as happy as I can for him as I can't imagine being in his shoes it's amazing what you can do , I never thought I could care for anyone and do the things I do it makes me proud of myself I didn't realise how strong I was until this terrible thing happened I have good and bad days but you just have to carry on

[smurfy2015]

Apologies if i annoy anyone by bumping this thread, both myself and my partner have several mental illnesses, several neurological, systemic illnesses and physical disabilites on top, we have chosen not to live together because of this as it creates a lot of strain on both of us in same house on different schedules, it is a PITA and i send supportive hugs to anyone in the same boat, there are no easy answers and one day at a time etc

{brew} and {chocolate}