Blue's terrible, horrible, no good, very bad day (life viewed through the lens of depression)

[Clues_Of_Blue]

Some of you are aware of my existence by now, but for those who aren't, I'm fairly new to this forum. I've been stumbling my way along with depression for somewhere around seven years. It was triggered by a life event and exacerbated by circumstances since then, which I've done my best to eliminate where possible. About a year ago I changed track with that and made the huge decision to end the relationship I was in. Rough though that was, I finally started to see a bit of progress. I've still had a fight on my hands, to stay afloat and get control of my time and money and my peace of mind, all of which were tied up for a long time in untangling my finances from those of my ex (not his fault, the bank made it really damn hard, and my job and my own state of mind weren't helping).

Now I've started enjoying things again, and am not always instantly down when I'm on my own. I was once a (deliberately) solitary creature who enjoyed my own company and learning everything I could, so it's good to be more like that again. The depression's always there, lurking in the background, but I sometimes go a few weeks at a time without any prolonged episodes. Long enough to start feeling like I'm healing or that my emotions have some concept of cause and effect again. Then down I slam again, sometimes for a day or two, other times for weeks, and it feels like I've made no progress at all. In these periods my mind and my emotions are constantly at war, particularly when I'm alone and/or it's quiet. My mind is calm for the most part, and well aware I'm strong and capable and have strategies and I actively work on those in spite of the depression. My emotions, on the other hand, are running about with flags chock full of negative messages and even though I know it's not (or even close) I feel like everything is collapsing, that I can't deal with it and I just want everything to stop. That's where I'm at, today.

I do have an amazing partner now, who is extremely supportive, and has helped me immensely. My current problem is that I need my friends and family, too. I so rarely have time that isn't ruined by unsociable work hours and also the energy and will to socialise, but my friends are seldom available when I do. In those times I know it may be weeks or months before I can see them again, and I miss them, and that's mostly when I crash again these days. Dunno how to fix that yet, but I need to vent, and here I am. Getting better but having a really crap day.

[Eagle Ray]

Dear Blue,

I'm so sorry about your husband's condition, the struggle he is going through and the struggle you are going through caring for him and dealing with everything. We are absolutely here for you anytime you want to express how you're feeling, vent, whatever you need to do. I did know his condition is terminal because I remember you mentioning it sometime back. I just wasn't sure of the timeframe. I am glad you are getting some help, though obviously it would be good if there was more.

I understand about the financial stress, the burnout and worries about the future. I quit my job when I was trying to work, study and care for my parents all at the same time. And I won't lie, it put me in a worse position financially and you also miss out on things like superannuation as well as income obviously. But somehow, I think as MK says, we stumble our way through. It is really quite incredible sometimes how we get through these things and it is probably so hard to take it all in right now, but there will be a future path, yet to be defined.

As far as professional supports go, it has been so hard for you to really be able to fully focus on finding that support with the care work you have been doing, and I know you've had some less than adequate experiences in looking for help. If it's any encouragement, I found my really good psychologist only after my caring work was over and I collapsed in a heap. It was then that I could concentrate more on myself. There was a lot to sort out after my Mum died and I did have to go through all that too, during which I tried a few not ideal psychologists and other types of counsellors. And then finally I found someone who is the right fit. I feel there will be a right fit out there for you Blue. It may take a bit of questing but it will be worth it to find the right help.

Your beautiful hubby has been a wonderful, caring influence in your life. You will be able to take some strength from his love and kindness going forward. I feel all loved ones are always with us in our hearts and spirit and that is something that can never be taken away from us. Like sbella says there is no one way or right way to grieve. There will be your path whatever that is and feels right for you.

Take good care and sending much love and support to you and hubby.

Very best wishes,

ER

[Clues_Of_Blue]

Hey SB,

I wish I could say the in-home and palliative care was anything of use. Turns out it's adding appointments, waiting, time and stress and providing exactly nothing in return. They said they'd help with stuff like emergency medication, they have failed to provide it, only adding more calls and messing around that has achieved nothing, leaving us with the old, slow, barely reliable methods of managing his utterly ridiculous amounts of medication. On top of that, the people supposedly "helping" me do nothing but insist I must make phone calls, phone calls, phone calls. The one thing I have told them repeatedly I cannot do. So basically assistance for my disability is inaccessible to me because, holy heck, I have a disability. Dear Lord.

Yes I have. I do it with not only limited support, but feeling at best disappointed and at worst attacked by those who have said they would support me. They have not only failed but made things exponentially harder. I love my husband dearly. His care depends on me, and these "supports" are damaging my capacity for that severely. I am worried for us both.

Not closed off due to grief. Closed off because I know the care is for him. It isn't for me, it never was. When he is gone, I'm on my own. I cannot be open to unreliable, uncaring people, it will only cause harm. Here I can speak. I wish there was safety for me in that, in person. There is little of that.

I guess I'll find out when the time comes. I don't really know yet how grief will manifest itself. I can't say I'm in a hurry to find out.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Hey MK,

Thank you for your words. You don't need to have advice, I just appreciate your support. I know I'm strong, I'm just tired of doing everything alone. It helps to know I have people on my side.

Kind thoughts,

Blue.

[Clues_Of_Blue]

Hey MK,

Thank you, I certainly do need room to vent. I wish I could say the "help" was helping, so far it's just been useless and made everything worse.

I'm sorry you went through that while caring for your parents, I understand. I'm not much worried about stumbling my way thorough, that's kind of my MO for all of my life so far.

I have been trying hard to deal with professional supports. So far there has been a 100% rate of them telling me to stop being disabled and make phone calls dispite me telling them repeatedly that is the one thing I cannot do. It's not like there aren't multiple other avenues of communication, but apparently I must do the one that harms me beyond all reason and functionality if I want any help, or just go without. When there is any energy whatsoever for it, I will be seeking disability advocacy services, because this is out of control and unbelievably unreasonable. It is 100% accessible for those businesses to use e-mail, text or video call, but they insist I must do the thing I cannot do. This will not happen.

I see your point that the real work for myself can't really happen until I'm on my own. I know this, and that's probably exactly how it will happen. There's about 10% of my effort going toward myself in this situation. I have at least found an ND counsellor in the meantime. Painfully expensive and so not accessibly often, but better than  nothing I guess. NDIS are not yet on board for this expense, they are insisting I stop being disabled to talk to them their way. Nice disability support service, huh?

My husband is by far the most beautiful person I have ever met. The one and only reliable, consistent person who has treated me like a priority in my whole life. It will be a powerful blow, losing him. We deliberately excluded "until death do we part" from our wedding vows. I am bound to him forever. This will not change.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue,

I’m so sorry for everything you are dealing with right now. It is really good to just communicate how you are feeling. What I am wondering is whether the ND counsellor could act as an advocate for you in relation to the difficulty with phone calls which the NDIS is not understanding at the moment? Would they be able to speak to a contact at the NDIS on your behalf? Sometimes it helps to have someone backing you up in an official capacity. Just having someone who is in your corner so to speak who understands the specific challenges you are facing. I’m also thinking about any autism associations that may exist in your state that may at least have some advice? I know it is ironic that it’s the NDIS who are not understanding. Even a letter from your counsellor may help them to grasp the real issue it is for you and how much it would support you if they understood this and enabled other means of communication.

This is a really hard time and very tough to be managing on your own. It is good to express your feelings and beautiful the relationship you have with your husband. Hold onto the strength in that, the beautiful support and understanding he has given you.

Sending you much love and support,

Eagle Ray

[mmMekitty]

Hello Blue,

I've signed a form giving my consent for one of my support workers & another for the Occupational Therapist to speak to the NDIA on my behalf, I've set up similar consent for the Plan Management company & the Support Co-ordinator, because I sometimes have difficulties conversing via the phone. & I also emphasise my preference for email (so I at least have a record).

I like the idea of getting someone to advocate on your behalf, too.

Everything I've done with NDIA.NDIS has been, in my view, excessively complicated & slow. I'm skeptical about the changes mentioned last year, when they come into effect, if they will make things any better.

Yes, on your side, completely.

Hugzies

mmMekitty

[Clues_Of_Blue]

Hey ER & MK,

Thanks for checking in and being so supportive, both of you. I'm hearing what you're saying. I do have a (short term) social worker poking the NDIS on my behalf. She has e-mailed and called them so many times, sent and resent the consent form I signed for her to enquire on my behalf. They spent about two months telling her they hadn't received it and have only acknowledged they have the form now her contract with me is almost over. And all they could give her about the status of making my planning meeting was in effect "we'll get to it". So I have someone official in my corner and it has achieved basically nothing. There are various autism specific organisations and disability advocacy services around. I'll be looking into that at some point. Really don't have the energy to keep pushing like this though, I'm more burnt out than I have ever been in my life. I miss fun. I miss sleep and rest. I just want to spend what time my husband has left enjoying his company and making his life as happy as I can make it. We're working to keep appointments and official communications to a minimum, putting timers on writing e-mails and moving appointments if there are more than two in the same week. Slow change, but things are getting better in stages.

Much appreciation and affection to you both,

Blue.

[Eagle Ray]

We are here for you dear Blue. Feel free to post whenever you need to. 

Sending you and hubby love, support and kindness,

ER

[Clues_Of_Blue]

Thanks, ER. We're doing kind of okay at the moment. Still a lot happening, but we've blown off some non-essential appointments to spend time with family instead. Exhausting in a different way, but at least that benefits us. Also I may have found a new advocate to help with NDIS stuff, through a friend. Fingers crossed my meeting with her next week leads to something helpful.

Kind thoughts,

Blue.

[Eagle Ray]

Dear Blue,

That’s great you’ve found ways to have that time with family. It’s really good to focus in on what most benefits you and hubby. And that is wonderful about the NDIS advocate. I hope the meeting with her next week goes well and offers some constructive and meaningful help going forward. I’m thinking of you and sending you warm wishes and much support.

Take good care,

ER