Accepting disability

[Eagle Ray]

Hi, today I’ve realised I may need to apply for the disability support pension. I’m with a disability employment agency and they recommended it today and my psychologist last week. On good days I can go for walks and do a few things at home. Other days I’m struggling to function to do basic tasks. Today I could not even get my car key in the lock because I was so unwell and had to lie in a park for sometime before driving home to my town, realising I wasn’t safe to drive until I rested.

I’ve had a chronic pain and fatigue condition for 35 years. I’ve pushed through periods of extreme pain on slow release synthetic opioid meds in order to be able to work. More recently I’ve developed an autoimmune liver disease. It somewhat stabilised with the right treatment in recent months, but can progress to liver failure if it worsens and so I have to manage it with care. I have complex ptsd, anxiety and depression, the latter made worse by recent steep changes in hormone levels from perimenopause. I’ve always pushed through in the past, but I feel I am spent and my body is screaming at me it can’t keep going as it has.

But I feel a sense of grief, a loss of who I wanted to be and hoped for in life. I had a creative business idea but despite being technically capable I’ve realised I’m unlikely to be able to run a business in any great capacity. Accepting my limitations is hard and I think I just have to write that down here.

I may not even qualify for the DSP as it’s so hard to get it now, yet I’m being encouraged to do it. My future feels so uncertain. I want to feel independent and capable. I don’t like accepting my limitations and it’s hard not to feel depressed. Not sure if anyone can relate but just needed to tell someone how I feel. Living alone I only have myself to keep myself going and it can be a real struggle at times. There is no one to help me on days when I’m incapacitated and in extreme pain. I was a carer for years also and that has also burnt me out. I am spent.

[mmMekitty]

Hi David,

I'm sorry & disappointed that the Men's Shed were not supportive & encouraging, fostering friendships & such, as I had thought that was precisely what they were originally formed to do for the men who participate in them.

It has been one thing I had to learn to do, to understand people have their opinions & we do not have to agree or share in them, take on in any way at all what someone else things of us, particularly people who we don't look up to or wish to be like.

When I was young, I was like a sponge, soaking up all the opinions of others & not knowing who I was at all. I'm still, several decades later, not sure who I am. How much of how I feel about myself is still related to what someone else thought.

ER, I think when I was young, I could not really comprehend mortality, even thoughts were quite bleak & I could not see a future for me. Now I am older, it seems to me, I can apprehend my future, my mortality too. Having the diagnosis of breast cancer late 2021 & the double mastectomy early 2022, & specialists emphasising to me that I need to lose weight, get healthier too, because if I don't another cancer developing is more likely. No, I don't want that.

Over the years I've been with my PDr he has helped me understand I need to be the one who cares for me, as I am my own responsibility & the one who suffers if I don't.  & I have been feeling better about myself, & I do care more.

That's helped me to push on & begin looking after myself, changing my diet, doing exercise, learning to set my own boundaries, realising when some things are not good for me, not helpful, & that I need to make more effort to speak up, to look for options & solutions to problems I have. I'm also thinking more about just was is important to me, for now & into my future.

We are confronted & we grow.

However, I do get stuck in how much I've lost, not only sight related. That's not helpful, I know.

Getting out into nature as you do seems like a wonderful way to find peace & pleasure, to see some of nature's wonders. Taking your time, whether you MUST or not, surely contributes to your enjoyment - being in the moment, I guess. It sounds so good.

My tinnitus is annoying, but I still appreciate music.

Hugzies

mmMekitty

[Guest_1055]

Hi Eagle Ray, I really do not know what to say. But my heart goes out to you and I am listening.

[Eagle Ray]

Hi David and MK,

David I don’t have lung disease that I’m aware of at this point but the liver disease which was starting to progress into fibrosis has an association with interstitial lung disease, lung fibrosis and other lung conditions. At various points over the last couple of years my lungs have significantly stiffened and it’s hard to breathe. I’m like that now but had had a good break from it for a few months. My liver was also reversing out of inflammation and fibrosis. I had a comprehensive blood test today which should give some idea of the liver. The standard med I’m on wasn’t working until I worked with a naturopath to correct gut dysbiosis, then my liver readings actually normalised. So something has just gone askew again. At times it feels like my body’s just had enough. A lot of it is linked to trauma as well. It’s like a force bigger than me is trying to take me out. Somatic work with my psychologist cleared the lung stiffness before and it really felt like that turned around a disease process. I’m going to do more somatic work with her in a week’s time which may shift the crushing sensations in my lungs and respiratory tract.

MK, I’m sorry you went through the breast cancer and double mastectomy. I’m glad you’ve found ways to self-care. Yes, I think when we’re young mortality is not something we really grasp. In recent years I’ve watched people close to me die and in some cases been with them at the time of death. It has actually taken the fear out of death itself for me because I could see that the body actually knows how to die. I’ve had intense grief in relation to my mother’s death because she literally died from a broken heart, but even her body knew what it was doing. I’m more worried about living with relentless physical suffering which has been lifelong than I am about dying. I’m exhausted. But seeing things like the beautiful moon or birds and animals or listening to music that resonates etc, those things keep me going, plus meaningful human contact. A friend visited today and it meant so much as she had real empathy and kindness.

Hugs, ER

[Eagle Ray]

Hi Shell, just seeing your message now. I am ok. You help me just by being kind and caring. I’ve just relapsed with my health and it’s like my body has gone into overwhelm. It’s just so unpleasant in my lungs and I’m very weak. But I came back from this before so I need to trust I can do it again. If anything I think it’s my body’s way of telling me I can’t necessarily do the things I wanted to believe I could and I have to set my expectations lower. I’m realising I really do need to apply for the disability support pension. I need to give my body the best chance of taking things slowly and actually healing instead of degenerating. I’m grateful for this forum and thanks for listening as I normally live with these things alone. My friend who visited today didn’t know really what I’ve been dealing with but I managed to talk to her also today. I think I’m just beginning to learn to tell people when I’m not ok, which I would never do in the past. I think struggling in isolation has significantly worsened health issues. We are actually not meant to struggle alone. I patted a little dog near where I had a blood test this morning and even that helped. So thank you everyone for your kind thoughtfulness.

[Croix]

Dear David (please excuse me butting in ER)

The Mens' Sher organisation has a specific purpose that does not sound as if it exaclt aligns wiht oyur needs (though I have to admit it does well wiht some others)

There is another organization called The Mens Table, which might be worth contacting as they look for long term relationships over an informal meal. They are designed to be a mutual support  in a way like this forum, and give you a chance to have a look at how they work in a trial meal with a leader. Conversations can be interesting and far ranging.

I realise mobility might be an issue for you (it certainly is for me) however you never know, the more you try things the more chance of something clicking.

ER, is htere any chance you can resume writing or playing music? When I've been in thrift shops I've seen quite elaborate keyboards just moldering in htere - no market I guess.

So what sort of music do you prefer?

Croix

[Eagle Ray]

Dear Croix,

 I think I can honestly say that I have a love of almost all genres of music. I have always been really interested in music from many different cultures and what sometimes gets called world music. I’ve been three times to the Womadelaide Festival in Adelaide which I thoroughly enjoyed. I love folk and roots music. While some really loose form jazz might not be my favourite thing, I love certain jazz such as Miles Davis’ Kind of Blue. I learned classical guitar as a child and teenager. I like classical music but especially the Renaissance and Baroque periods (e.g. I prefer Bach and Vivaldi to later classical). I love storytelling songwriters. I’ve actually connected with a lot of Bruce Springsteen’s songs which have so mirrored struggles in my own life. I’ve seen him live 4 times! I could name many of his songs that are medicinal to me. Most recently I’ve been listening to Evanescence who are a gothic metal band with symphonic overtones from their classically trained singer Amy Lee. I love music that is uplifting. I love a lot of 80s music (Cyndi Lauper, Nik Kershaw etc). I love idealistic music. I love music that comes from the heart and soul. I love soul and gospel music. Country blues is another favourite. As you can see, it just goes on and on.

 I actually have a much neglected keyboard and guitar, and even a violin I tried to teach myself which I was actually doing ok on but the bow now needs repair.

Basically I went through a trauma in 2010 that damaged the part of me that had been songwriting for about 3 years at that point. I went from not being able to put my guitar down and singing all the time to not being able to play at all. Something in me broke and I still haven’t quite repaired it. If I could, I think it would be really healing. That’s what it was doing for me before. I was even performing my songs at open mic nights. It seems like another lifetime ago now. I might find a way back to playing music.

[David35]

Eagle Ray,

Sorry to hear. You've certainly been through a lot. I don't know what to say that could help. Life is so unfair.

meKitty,

Some are, some aren't. It all depends on the people who go there. I had a good experience about 13 years ago with one, but I've outgrown it a bit. I've found that putting too much self-worth in the hands of others can be really soul destroying. Especially if they are relatives. Sometimes people can have far too much to say about things they have neither experienced or know anything about. But it makes them feel good to share their ignorance with you and possibly insult.
After recovering from a traumatic brain injury back in early 2000's, I was unemployed for several years until I finally got on the DSP, around 2006 (I think). One day I was arguing with my brother and he just yelled "Get a job!". Although he apologised later to clear his conscience, the scar has always been there. Recently I entrusted him with some personal feelings during mum's cancer treatment and he mocked me for it. He was someone I used to look up to and turn to, but I've had to guard myself against criticism. After dad died, my cousin once said to me "Be careful who you share your heart with". It's so true.

I think it's normal to feel a sense of loss like you have. The hard part is accepting it. As much as society tells us to just "crack on", or "get over it" sometimes it helps to process our painful past. That's something I'm trying to work on. Accepting the past so I can look forward to the future.

[Croix]

Dear ER~

I can see your problem and understand the depth of loss you had, however by the tone of your last post I'm wondering if that break is starting to improve. When you are ready If you'd like a pleasant challenge, vocal and or keyboard may I suggest Paolo Conte's Via con Me. It is interesting with its mix of languages and mostly cheerful. I'm told the chords and timing are quite simple. Mind you a recommendation from a walrus might require careful consideration.

It's also one of my favorites to cheer me up:)

Croix

[Eagle Ray]

Hi David,

 I just want to empathise with your situation with your brother. I have had what sounds like a similar situation with mine. A few times I tried to share my concerns and feelings about Mum’s cancer treatment as you did and got responses that were dismissive or judgemental. I’ve actually learned not to share my personal feelings with him. I still remember when I was working my guts out caring for Mum while trying to complete uni studies. I lived with her for the last 11 months of her life. It was extremely full on on a daily basis - changing wound dressings, helping her before and after her shower, driving to her medical appointments etc. Then there was the massive collapse in her already fragile mental health and I was trying to support her through that while my health was collapsing. My brother did not help or support us in any way. One day he came to visit and when he was leaving his words were, “Next time I visit I expect it to be spotless”, indicating the house was not up to his standards. I won’t write here what I now wish I’d said to him, but I’ve got to a point now where if he speaks to me like this, he is going to get a stern response.

In your case David you’ve sustained a traumatic brain injury which is a huge thing to go through and you have been through challenges and vulnerabilities it sounds like your brother isn’t appreciating (or at least not expressing understanding for - sometimes people care at some level but don’t express it). It often seems to be in these situations the other person has an issue of their own they’re not dealing with and instead of taking responsibility for it they have a go at someone else. Their statements are really a reflection of something messed up in their internal state, not a reflection on you or your worth as a person. You have the courage to work through painful things from the past and there is wisdom and strength in that. It’s possible that your brother lacks the same courage to face and work through emotions, and is deflecting that discomfort onto you.

I think the important thing is to stay in contact with empathic people you resonate with, people like your cousin who sounds wise in saying to be careful who you share your heart with. Keep being around the good energy that comes from the people who are kind and understanding. It’s so easy to be swamped by the hurtful things which I certainly experience, but there are such kind and lovely people out there too. All the best as you continue navigating your healing journey.

[Eagle Ray]

Hello Croix,

 I’ll always listen to recommendations from a walrus. I consider walruses to be very wise. I was looking at pictures of baby walruses and they already look wise because they have these whiskers that look like the moustache on an older gentleman. I can imagine them with spectacles smoking a pipe and reading a newspaper in a comfy lounge chair, pausing now and then to share a wise anecdote.

Thank you for sharing about the song Via con Me. I watched and listened to a YouTube clip of it which was quite delightful. It was paired very well with the wonderful dancing of Fred and Ginger.

I have had occasional impulses to pick up my guitar in recent times. That is something. It would take too much space to explain how the part of me that was expressing itself through music died back then. It’s like part of me got obliterated. So I’m now some other being trying to reform my sense of self and how I fit into the world. Interestingly I didn’t lose my connection with photography at the time and that became my solace and comfort. But even that I’ve hardly done in the past year, though it’s slowly coming back. There is no doubt I’ve become clinically depressed, so trying to crawl my way out.

 I’m having to also deal with the odd comment from people, such as a couple of neighbours, judging me for not working. It often comes in the form of something like, “What do you do all day? It’s no use lying around doing nothing” or “I’d rather not be working”, implying I’m having a nice holiday compared with them. They have no idea about how I’ve spent years working extremely hard at multiple jobs nor the health challenges I’ve had. I try not to let it get me down but sometimes it does, and happened this afternoon actually. I don’t dare tell them I may be applying for the DSP. I’m already struggling with the feeling of loss for the working life I want to have. Sorry, feeling down right now, but I know things always look up again sooner or later. I’ll just think about cute baby walruses.