Partners who chose to stay for the long haul

[Determined]

Hi @Former-Member  and welcome.

[Determined]

Hi @Differentlife  and welcome 😊

[Former-Member]

Hi @Differentlife 

There is grief when our loved ones have a diagnosis, living grief at times as limitations of their disorders become apparent.

You asked:

How do you accept that and stay when this MI has destroyed your dreams and plans too!

I don't believe that anyone is exempt from life's difficulties and this is the lot we have been allocated and we need to do what is necessary to manage it. Reevaluation is the key, life might be different to what we imagined but I firmly believe we can still live well in spite of a diagnosis. 

 How do you stop being so resentful and accept it?

I think focusing what we still have rather than what we have lost has been helpful. Giving myself permission to be resentful but not getting stuck in that place, taking steps to build resilience and allowing love to return.

How can we be happy again when he is still so cold and distant ?

This is a tough one as some psych meds are well known to blunt affect, I think being open about this is important and any loss of libido can be discussed /addressed with his psychiatrist. I am more forthcoming with regard to my own needs, spelling them out in clear and easily understood terms and at one stage I did verbalise the expectation that he is to treat me as his beloved (I do allow for his condition). This extends to showing affection as well as other considerations. I try and ensure I start the day giving Mr Darcy a good morning and a few kisses ignoring any grumpiness. 

[Faith-and-Hope]

Still struggling with this one @Differentlife ..., and we don’t have a diagnosis ..... yet ..... and may actually never have one if this illness continues to remain hidden to the wider outside world.  I had someone today liken it to smoking ..... and I k ow smoking can do terrible damage, but this is in a different league.  Even disclosing the extent of the illness, it can seem so improbable that some assume it’s just a difference of opinion about what we want from life as a couple ..... which is devastating too.

While it definitely feels like being caught between a rock and a hard place, I am learning from how @Former-Member @Determined @Shaz51  approach their own situations, about how to live well despite a diagnosis (or absence of one, in our case).  While my hubby doesn’t have medication or counsellor support, I go to a counsellor for carer support, because I am aware that this issue is too big to try to carry on my own.

Investing in new dreams has become part of living with this illness ..... my own dreams, and looking after me.  It’s not selfish, it’s necessary.  My hubby needs an intervention, diagnosis, medication and counsellor support, and without his insight into his own situation, I can’t make that happen, but I do have to find a way forward regardless.

The forums really help.

[Faith-and-Hope]

And welcome to the forums @Differentlife 👋

[Differentlife]

Thanks all for your welcome!  (Not sure how to tag you in yet).  

I appreciate what you are saying and have been laying awake thinking on your advice half the night.  I have been thinking where we have been and how horrible it was and how things are better and more stable.  I suppose it like any medical diagnosis eg loosing the use of your legs - you adjust and carry on as a couple.  I’m trying to see MI like that but as we all know it is not always that simple .  Relationship OCD is tiring as I am always accused of affairs even when I am here with him all the time just crazy stuff!  I have got up this morning and have promised myself I will look at things differently as you say.  But as you all know it takes time and living grief is such a good way to describe me at the moment.  But at the end of the day I love him will look after him and stay as I’m sure he would have for me.  Today is another day right!  One day at a time...

[Shaz51]

hello @Differentlife 

put a @  in front of members name so they will get your message @Faith-and-Hope 

[Former-Member]

@Differentlife 

When you say "relationship OCD" I am wondering what you mean ... Does his pdoc know that he is accusing you of having affairs?

[Faith-and-Hope]

That’s it @Differentlife .  (@ symbol directly after someone’s user name tags them).

I spoke to someone yesterday about being in “living grief” and they just didn’t get it, telling me I had to just resolve it..... ???  How do you do that ? 😳🤔:face_with_rolling_eyes:😣😔

They were trying to be helpful, but that comment was I n the same category as, “if it was that bad, why didn’t you just leave ?”  and “as long as he is not hurting anyone else, what’s the problem ?”  

My answer was, “walk a mile in my shoes”.  I think that until you have experienced something like this, you really can’t understand.

I think that once you have made the decision to stay the course, it’s like you said - finding ways to adapt to it is the key, and those adaptions don’t have yo be hurdled all at once.  Maybe try taking a baby step every day, and work with exchanges ..... exchange something that is not working any more with a new adaptive choice.

We are moving house to have separate bedrooms, because sharing that space is not working for us at all (hubby is seriously sleep impaired, and eating and bathrooming on and off all night), and we need family-sized kitchen and laundry spaces because he has taken over both in our small living space.  

Using that as a metaphor, make space for yourself.  It can’t be all about him, and it can’t be all about the illness ..... make some room for you to pursue your own interests and take time out, with friends, hobbies, taking a daily walk ..... it takes a bit of working out new patterns and thoughts.

Take care of you 🌷

[Former-Member]

I came across this "phases of disaster" chart and thought it did in some way parallel what us long haulers experience. 

We see the warning signs of unusual behaviours, but it often takes a disaster for our loved ones to get help. 

On getting a diagnosis we feel that with treatment and meds all will be well and we can handle it.

The harsh reality then sets in as meds are trialled, often taking a long time to get things tight, the chronic nature of the condition sets in. Things are different from before and we often lose the support of family and friends as they have difficulty coping, grief sets in.

As we work through our grief, understand what healthy support involves we rebuild to our new reality and make the most of it.