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.

[Croix]

Dear ER~

Despite brain fog and fatigue you are attempting to do the right things - which means I guess you remain lucid and can plan. Obviously getting your prescription sorted was necessary, it was simply you had some physical activity so your plan was temporarily driven from your mind. Upsetting, confusing and frustrating, probably wiht a sense of loss.

You realized what was happening and took a sensible step - seeking refuge in a well-tried remedy, the forest bench with all that surrounds it. This pushed your physical system and you had to take time until it started to recover then paced yourself. Again spot on, an admirable set of coping strategies that worked, the proof? You remembered the script.

You do what you can, and plan for the rest. Maybe a note about the script to remind you (even one to get the printer fixed if you can afford it).. Emergency nutritious food. At times I too become too short of breath when eating, and don't try to force it. I have a stash of sachets of nutritious substitute meals I can slowly drink. Not advisable to just have those all the time, but fine for the odd occasion .

When things you wish to do are denied you and your world shrinks from physical limits - plus fog - then it is no wonder you start to feel separate from everyone else. It is a symptom, not you. And I hope soon your new regimen will start to assist.

As for having some kind of identity -Ha.

You have it in spades here, talking of your own trials, giving assistance where you can, simply talking with  others - and being a dratted nuisance on my iceberg. You belong. Identity - as I found - is not always linked to occupation.

Croix

[Eagle Ray]

Dear Croix,

Thank you for responding with so much thoughtfulness and care to everything I wrote. I did finally eat some leftovers I heated up. I could only eat half. The sachets of nutritious substitute meals you mention do sound useful when I’m too far gone to function.

Yes, it was being in the forest that enabled me to remember the script. The forest there is a deeply healing place. My body just stays there for hours of its own volition. It’s not like a conscious decision, more like a necessary survival strategy my body follows.

The liver specialist spoke yesterday of restoring the blood-brain barrier which is compromised in the disease. It leads to effects akin to senile dementia. It’s genuinely frightening at times. I draw total blanks over and over for large parts of the day. The new medication I’m about to start is the only one that shows restoration of the blood-brain barrier, at least in experiments on mouse models and neural cells taken from people with the disease. So it’s kind of experimental in a way still. But it has been shown to restore hippocampal function and reverse brain and liver deterioration.

I’m probably just at an especially low point as it has been an extremely long struggle. I have so much empathy for anyone facing dementia. My fine motor function also goes. It’s really hard tapping this message onto my phone. My brain has to work extremely hard to direct my finger. This has been happening since early 2016. For a long time no doctors listened to me when I said something was wrong. Through all that deterioration I was caring for parents deteriorating themselves towards death, a brother having a breakdown and then friends were committing suicide. One had chronic fatigue. After so many years of struggle, working extremely hard to heal himself, he gave up. The other tried to get help for her autism spectrum condition which left her feeling worse. She continued to be subjected to severe bullying at work and by her family. She suicided immediately after my Dad’s death. My other friend, the first to go, had bipolar disorder. I’ve just been surrounded by collapse and death. My mother’s mother suicided. So did my cousin.

I’ve been through more than I can take. I was subjected to an abusive attack following my mother’s death and abusive behaviour at her funeral, when I wanted her spirit just to be free for once. My own spirit finally broke.

I just have to write this all down. I have to express what has happened to me. I know I still have things to look forward to. Every time I see a bird in my garden I feel better. I feel like the birds watch over and protect me. I love photography and music. And I look forward to mischief on your iceberg:) Thank you for being hopeful for me.

[Croix]

Dear ER~

"I look forward to mischief on your iceberg:)" Oh dear, I'm obviously encouraging you in the wrong direction

When I'm tired my hand starts to tremble and I have difficulty wiht my phone, putting it sideways enlarges the letters a little and I use a rubber tipped stylus (which are cheap). Not perfect but does help a bit. A blob of office sticky putty holds it close when I'm not using it. Sadly it doesn't do a thing to improve my spelling:( 

Although you have mentioned playing guitar on occasions maybe that is for the future, just listening can be very rewarding as you know. Both music and birdsong can fill many gaps.

I can remember after my first wife passed away I remarried and brought my new bride to my home. She was nervous expecting to find the personality of my first wife vppervading all. We saw a white hawk (something as rare as) and it gave hte place a welcoming feeling. Her nerves went away.

Waiting for your 'experiment to work' takes patience, and if one is apprehensive about a lack of  outcome then that makes it especially hard. All the healing influences you can get are needed. You already know where to  find some.

I doubt your spirit is broken, yes there have been a massive amout of unhappy events but while you may sound tired and discouraged at times that is more than understandable. The body too influences the mind. Broken is something else, and I don't think you have that in you. You keep trying, and even your body seeks out what is good for you.

"You are, we are
All part of this everything"

Croix

[Eagle Ray]

Dear Croix,

Thank you for again being so incredibly kind and thoughtful.

 I love what you wrote about seeing the white hawk and how your wife’s nerves went away. I’ve had multiple experiences with birds where they’ve felt like messengers. I had various ones following both my parents deaths. About 5-6 months after Mum died I was at a scenic coastal location. A female magpie landed right in front of me on a rock about 2 metres away. She started to sing melodiously. I looked around and listened for other magpies. There were none. She just kept singing straight at me like she was directly talking to me. It really felt like Mum’s spirit.

 I drove to the river mouth earlier today. The dolphins were super energetic, not just fishing but playing. They were doing twists and back flips in mid air, having the time of their lives. It was great to see.

 I’m now under a blanket having quite a hard time breathing but usually the more I rest the easier it gets. I’ve had particular imagery come up a lot recently linked to a past trauma event and realised it’s yet another thing my body and mind are trying to process. I contacted my psychologist yesterday and going to work with her on this on Tuesday. I’ve often found that as the next thing emerges from my unconscious to deal with I often feel particularly horrendous. My brain fog at present also seems to lower the defences I usually have against trauma memories so they emerge with full force. But that seems to be part of trauma processing and is an opportunity to purge it from the nervous system. This one I can best describe as transgenerational war trauma. I won’t try to explain details, except it’s intense and I feel like if I can heal it I’m healing the trauma of past generations as well, if that makes any sense?

Thank you for seeing me as not broken. My Dad never broke despite having so many reasons to over his life. I know I have his spirit. The morning of the day he collapsed before death he had two pieces of cake and a large coffee at a cafe! He could barely move or function (very advanced Parkinson’s) but he was still finding that enjoyment from life till the end. His rages had well and truly left him. He died so peacefully, the transition between breathing and not breathing almost imperceptible.

We are indeed all part of everything. I see that in all living things and in the way past, present and future are all subsumed inside one another. I feel that’s all connected with trauma healing as well.

Hmmm, now what mischief can I think up for being pesky to a walrus 🤔🙂

[Eagle Ray]

P.S. Croix, your mention of the white hawk has got me listening to songs I like where birds of prey are messengers. The first is yet another Tom Petty song I really like, You and I Will Meet Again. The second is Solsbury Hill by Peter Gabriel. Both are songs of uplift and hope.

[Croix]

Dear ER~

Thank you for telling me about the dolphins, it puts a scene in my mind's eye that is powerful and healing. Also for the songs with red-wing hawk and eagle, though that magpie is the extra special one.

Feeling horrendous, fearful or simply so tired is only natuarl when you realise a fresh set of memories is coming to you. I"m glad you have your psych to assist you navigate them. Actually I was wrong to say "fresh", if you are like me they are old, and most important part of a finite number stored in you. You are progressing though them towards a time they will all be dealt with.

I'm not exactly sure I understand about healing trans-generational war trauma. I do no one act in war can fan out from just that act to affect the lives on may others, and they in turn affect more. Naturally that includes subsequent generations. I don't feel that you can have the entire burden of everything about it on your shoulders, however do beleive if you can find peace with those thoughts in oyur mind that is a pretty special thing.

Further that can help others find peace too

My apologies if I'm missing the point -what do you expect from a walrus anyway:)

Croix

[Eagle Ray]

Dear Croix,

The dolphins were truly joyful. Their power in the water is astounding. Quite a lot of people stopped and watched and were mesmerised for ages as they never seemed to tire from diving about and doing mid air acrobatics.

Trauma content warning. I didn't want to go into detail about the transgenerational trauma, but basically I had extremely violent images and sensations of being attacked as a young child onwards which I still get today that I see and feel before going to bed at night. I can't explain the details here. But they weren't from my parents verbal and physical aggression, which while frightening wasn't as bad as this imagery. It was only as a young adult that my Dad told me about a particular severe trauma his father had as a soldier. Without knowing anything about this until then I had been reliving this trauma in my own body. So had my Dad who had nightmares about it his whole life. My grandfather was also a POW in addition to the above trauma. I've done a lot of research into epigenetics and they are finding changes in gene expression can get passed down that switch on during traumatic experiences for some people. The most amount of research done in this field is in relation to the holocaust. From what I've experienced it's like a trauma memory is already kind of switched on in you. They first started seeing this in mice studies. Mice whose grandparents had been habituated to a pain stimulus in relation to a particular smell would have a fear of the smell without ever having met the previous generations, nor had the pain stimulus. So literally, they were born with a fear of that smell. I think what's happened to me was I was born with a fear memory and the traumatic imagery that went with it, as was my Dad. It's the only way I can explain it as I never met my grandfather. I'm basically confronting traumatic imagery that has been involuntarily arising and impacting me my whole life. It's really come up for me again in recent weeks. I hope that's not too full on to write about here. It's actually a relief to be facing it. I'm only putting it into words for the first time in the last few days. My Dad and I may both have been affected because we both had trauma around our births and early life which may have made us extra susceptible to having certain genes switched on. The good thing about epigenetics is the genes that get these tags that lead to changes in expression can be switched back again. So while it may sound depressing, to the contrary it's an avenue through which trauma passed down can heal.

On a lighter note, I was able to sing and play the song I wrote this evening. Despite struggling so much to breathe today I felt I actually sang better than other days. It helps enormously. It makes me yawn a lot which I know is a good sign because it means my parasympathetic nervous system (relaxation response) is kicking in. So I think singing is going to be a profoundly healing tool.

May you sleep peacefully in the igloo tonight.

[Croix]

Dear ER~

How can I sleep peacefully with inebriate kiwis snoring in each corner and pesky penguins using the outside of my igloo as a slide (Weeeee...SPLASH!)?

Singing, when you can manage it, is sure to do good, as is composing and playing your own music. You seem instinctively to go for the things that will do you good. Do you have a particular style?

Midnight mass with traditional carols on Christmas eve has been a very healing experience. Sadly I've not gone in recent years though I wish I could.

I can see what your mean about transgenerational trauma and have read about the things you mention, though have no expereice in that area. All I can say is that the mix of your own experiences and any handed down now simply reside in you, and that can make things manageable - even if very difficult - as it is only you that you have to deal with. I'm sure in time you will.

Let's hope when you perform your music it is you that yawns:) (Sorry about that chief)

Croix (A Maxwell Smart fan)

[Eagle Ray]

Dear Croix,

Hehehe:) Yes, it’s quite possible I may induce yawning in others and not just myself. The style of the song I can probably best describe as folky ethereal. It is a song about healing myself through the beautiful things around me and being lifted up by love. It’s also about healing the past while not knowing the future, but accepting the not knowing and understanding that reaching for a higher place of love means everything will be ok, whatever the outcome. It’s like an acceptance of all things as they are. The song recognises the struggle I’m in while seeking a release from struggle and letting go so healing is possible. It’s like you can heal in spirit even if the body is struggling. It’s like when you let go the body follows the spirit and a natural healing process sets in motion.

 I wrote quite a lot of folky type songs in the past. I did write one country song. I used to be in two songwriting groups where we would meet every couple of weeks and share the latest songs we’d written and give each other feedback. It was a wonderful thing to do. I’m thinking I’d love to do it again and I’m sure there’s a bunch of budding songwriters out there. So when feeling better I might do something to follow that up.

 I pick up my new med from the pharmacy tomorrow. I really hope it works and I start feeling a lot better soon.

The trauma thing is like an embedded memory. It’s non-verbal and precognitive. It’s not as traumatising as it might sound because you adapt to it over a lifetime, but it is one of a number of things that connect to my strong fear responses. I’m now seeing my psych on Thursday. I asked if I could switch till then as I have a Bowen therapy appointment on Wednesday and thought it might be good to do that first, to release some of the restricted breathing which helps me then to communicate better with my psych.

Bowen therapy is an interesting physical therapy that involves small manipulations of fascia that help realign muscles and reset the autonomic nervous system. It just occurred to me now, I wonder if that would be helpful for COPD? I think practitioners vary in how they approach it. I have found a very good practitioner in a nearby town and my entire musculoskeletal system and autonomic nervous system shift afterwards.

Get Smart was a great show. Mel Brooks type humour is like a whole genre in itself. I remember seeing him and his son doing an educational thing about social distancing at the beginning of Covid. He still seems to be going strong into his 90s. A sense of humour helps with that I’m sure.

I’m imagining kiwis on their backs with legs in the air snoring raucously. I’ve lived with dogs who slept on the couch like that. One managed to slide off the couch as a puppy, plonk on the floor and just keep snoring:)

May you find snippets of sleep between snoring kiwis and yahooing penguins.

[Croix]

Dear ER~

I'm sure there is a two way relationship between the body and the mind, so if your mind is healed it may well have a positive effect on your body, I hope it does.

I was not familiar with Bowen therapy so I looked it up on the Victorian Governemt's health site. It sounds a very gentle non-invasive treatment, I'm not sure it restores faulty alvioli but if I get a chance I"ll ask.

Get Smart was something special, so ridiculous as to be hilarious. Attempts at remakes have not really been successful, but then again if the original is excellent they are not gong to be, that magic mix of actors is no longer there. People tend to forget it was an ensemble, wiht one character needing the other for best effect.

You mentioned you have picked up up the new meds and are seeing your psych tomorrow, it hope it all goes well

Croix