Trying to maintain balance

[Clues_Of_Blue]

My partner was born with a heart condition, which in turn deprived his body of normal levels of oxygen and damaged his lungs. He grew up being told he was not expected to live to the age of twenty. He surpassed that, but over the course of our relationship his health continued to go downhill. Eventually he quit work, some while later quit study, and finally moved in with me, having accepted he needed my help with pretty much everything. Not long after he moved in we got the call - there was a donor, and he was to have both heart and lungs transplanted.

That was about four months ago. Physically, he is able to do things he hasn't been able to do for years, but he is by no means mended. Mentally... he's battled depression for years and had a pretty good handle on it. But now, the ordeal of surgery and the lengthy stay in an interstate hospital, the sheer amount of time we had to be away from home and managing that with the rigors of covid, a bunch of things going wrong at home after that making it extremely hard to get into any sense of normalcy... It's taken it's toll on both of us. He is on immune suppressants, which make him vulnerable to any bug going past, never mind the big one everyone is on about. He has a fungal infection in his lungs, from spores we all breathe in at one time or another but don't know about because our body sends them on their way. His various meds make him nauseous on and off, and give him the shakes. We don't know if his constant exhaustion is physical or mental in nature, or both.

Then here's me, also a long term depression sufferer, burnt out long before becoming a carer in a job I utterly loathe (yes of course I've tried finding another, please do not ask that!). He can't work, of course, and I can't provide for us without working - whatever he gets from Centrelink goes down depending on my income, so the more I work the more I have to. I somehow have to manage a household, care for our two birds and keep two depressed people out of that black hole we go down, each of those things being full time jobs in their own right. I'm half managing that whilst on leave. Now the money is running out and I am on the verge of returning to work, I have no idea how I am going to cope with it all and somehow have room for taking care of myself.

I wouldn't want to be with anyone else and of course I don't begrudge my partner for needing me as he does. On the flip side, how the heck do I maintain balance with work thrown back into the mix?

[Clues_Of_Blue]

I haven't heard of the Carer Gateway before, Elizabeth, so that's really good information for me to look into. Thank you. You're not kidding about Centrelink. Sorry to hear of your husband's situation, I can just imagine how challenging that is.

It really is difficult to balance, isn't it? I'm sure it would be even without our own mental health struggles. I don't know if you've noticed it, there's a thread on self care in the Staying Well section, I find it helpful to pop in sometimes, keep myself accountable for looking after my own needs. Others there have some pretty good ideas for stuff to do for ourselves, too. Perhaps it might help you a little? Here to listen if you want to talk about your experience.

[Clues_Of_Blue]

Hey Rising,

Do you mind me calling you "Rising"? Sounds more companionable with the "The".

Well, I guess I can't blame you about cheese, I'm rather partial to it, myself. I didn't actually struggle with going vegetarian, though I thought I would. It was a wholly ethical decision for me, the lives of animals are more important to me than pretty much anything. I haven't done any slow cooker stuff, but have come up with a lot of tweaks to meat based recipes. Your book idea is a good one, though if I were to have the energy to write a book, it will be on budgeting. Ol' Blue knows how to stretch a dollar a long way.

What you've said doesn't sound selfish, it's a simple fact. I was talking to someone just now about "compassion fatigue". Feeling for others is definitely exhausting. Fortunately, I'm not someone who takes the pain of others on myself, so that isn't a problem for me, and I know when to step back in most situations. The only place where the line is blurry is in my home, with my partner. He is right there all the time, needing me, and there is much less emotional separation when it's the person I am bound to. My friends and family know how much is on my plate and don't ask a lot of me, just a friendly ear or some company now and then, and that I can do - for my own sake as much as theirs.

Elizabeth's information is good, and I'll be following that up when I have a day off. I could definitely afford to do some more stretches and things. I do have physio exercises, which I have been doing. They help a bit. Will be off to the doctor in the fairly near future, I know better than to leave this unattended. One more bloody thing to do. Sigh.

How are you doing?

[therising]

Hi Blue's Clues

Checking in to see how you are. Hoping the holiday season is being kind to you. Such a stressful time of year for some, that's for sure.

Myself, I'm well. Thanks for asking. By the way, I don't mind at all what name you feel comfortable with giving me. I must say, when I 1st saw your name I could not help but think of 'The thinking chair' song from Blue's Clues. Used to love watching that show with my nephew when he was little. How does it go, something like 'When we use our mind, a step at a time, we can do anything that we wanna do'. A step at a time is definitely hard to master when so many things are happening at once, hey. Finding the clues as to how life is meant to unfold more easily is definitely a challenge under certain circumstances. Elizabeth CP has given you a brilliant tip to explore in the way forward which I hope makes some positive difference. Little differences here and there can begin to add up, especially when the sameness of everything has become truly taxing.

🙂

[Clues_Of_Blue]

Hey Rising,

Thanks. It's been pretty full on, ol' Blue works in retail so I'm in the sector that works most - including Boxing Day, because my government decided SA would be the only state to not keep it a public holiday. Jerks. Christmas itself was okay, hope yours was too.

Glad you're doing well, hopefully not too busy over the silly season. Cheers for being accommodating re your name. My dad used to say "Call me whatever you like, just don't call me late for lunch". Hm, I don't know the song off by heart, the name came to me because Blue was already taken. My nephews loved the show, too. As for "one step at a time", I'm pretty good at that, a woman of my meagre resources deals with most things that way, as much as it galls me I can seldom do a thing quickly.

Yes, I've been lax in following her tip, unfortunately. Work has slammed my energy back down into the ground, I've had a bunch of physical ailments to trundle off to the doctor with and other bits of my mental health story have come to the fore to crash tackle me, so my mind has been everywhere. Trying to hang onto some self care. Some days I do better than others, for that, but as you say, it's the little things that make the difference. I appreciate you checking in. 🙂

Blue.

[Clues_Of_Blue]

It's been a long time since I posted in here, but I think it is relevant that I do. My aforementioned partner (who is now my husband) did not ultimately benefit in the ways we had hoped from the transplant surgery. There were complications from the start. Early this year his lungs began to reject. The doctors exhausted every treatment option but the rejection has not been halted. For a while it looked like a second transplant might be possible, they changed their minds about that a bunch of times - at the present moment it is looking extremely unlikely. The specialist's last estimate of his life expectancy is 6-12 months. This, for a man who is not even 30.

As things are now, he is physically able to do very little. He's on oxygen all the time. He can't walk much, he mostly uses a wheelchair. He needs my help to shower and dress. Even using the toilet leaves him breathless and in pain. It's cruel that we had this hope for a future together from the surgery and now he is struggling even more than he was before, only two years later.

For me, giving this level of care is very difficult. I say this relative to managing around my own mental health and specific skill set. I wouldn't swap my life for any other, I love my husband and would never forsake him. He is the most amazing and beautiful human being I could have hoped to share my life with and deserves the best I can do for him.

That's kind of where it falls down. The number of little things I have to remember and do, the time and resource management, the appointments and trying to keep track of the general poor communication of "professionals"... Having ADHD (which has not responded well to any medication thus far) makes all this stuff extremely difficult. For context, no matter how many reminders or little executive function supporting tricks I employ, it can take literally 5 seconds to forget all about an important thing if I am not actively engaged with it - if so much as a sound or a sight or a thought catches my attention for a moment. This gets worse and more frequent the more tired and stressed I am. And how can I be anything other than tired and stressed when my husband is dying and needs me constantly for everything?

I am trying now to work out how to get any rest and manage self care and be even slightly okay for both our sakes.