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.

[Eagle Ray]

Many thanks Croix,

 I started the new med this morning. I felt very unwell during the day but feeling quite improved tonight. Have no idea if there’s a connection but really hope the med helps.

The body and mind are so profoundly connected. I have no doubt that emotional healing has profound healing effects on the body.

 I’m not sure if Bowen therapy could do much to heal faulty alvioli directly. I think it more just calms the autonomic nervous system, giving it a reset, which can sometimes help with constricted breathing. I can’t quite remember the explanation exactly in the book I mentioned to you on the vagus nerve, other than exercises altering autonomic function through the vagus nerve really helped a guy with COPD go upstairs without breathlessness. The Bowen therapist today worked on my thoracic area quite a bit and I think it’s helped my breathing. Certainly my muscles and fascia seemed to have released a lot of tension afterwards.

Yes the absurdity of Get Smart made it so funny. After you mentioned it I watched a collection of moments in the show. It started with a scene where Max is being picked up on a stretcher to go hospital. The paramedics are totally incompetent and keep dropping him and then have the difficult task of getting him on the stretcher through revolving doors. It’s so farcical it had me rollicking 🤣

I agree, it’s hard to do remakes without the combination of original ensemble actors. I’ve only seen snippets of the more recent version of Hitchhikers Guide to the Galaxy, but it didn’t seem the same, including the kind of more spherical looking Marvin the Robot. What made part of Marvin’s character was his kind of angularity that seemed to go with his melancholy.

Thinking of the absurd, I just had a vision of pesky penguins break dancing on the iceberg where the slippery ice enables them to spin in circles on their bellies. I wonder if that’s a side effect of the new medication? 🤔

[Eagle Ray]

I’ve awoken from noisy wind and rain. Slowly coming to terms with my current condition. I’ve learned in recent days the cognitive symptoms I’m experiencing are from a back up of bile from my faulty liver that gets into the brain. It’s described as a form of brain poisoning. So the cognitive confusion makes sense. The new medication I’m on has been found in experimental studies to restore the blood-brain barrier, thus restoring cognitive function. But there are also risks in that the medication has caused liver injury and even death in people with more advanced stages of the disease. Hence the regular blood tests ordered to check liver function by the specialist.

So I’m in this strange place where I don’t know whether the pill I’m taking every day is doing me good or harm, or both. I’m having to fully recognise I’m in a precarious place.

Thankfully the specialist has written a verification of medical condition form for Centrelink. I’m seeing a local GP today to request a Centrelink medical certificate for a 3 month exemption. The two things should hopefully give me 3 months reprieve from obligations and after that I can apply for DSP if there’s no improvement.

The basal ganglia is also impacted which likely explains the fine motor deficits I’m experiencing. Those started in 2016. My Dad had Parkinson’s in which this area of the brain is particularly affected. I feel like my body is playing out the same patterns as his did.

 I had a constructive session with my psych yesterday, working on trauma stuff passed down on my Dad’s side. We most often work in a sphere of feeling and visualisation more than a cognitive one. That works so much better for me, and even more so now as my executive brain function is limited. Through visualisations I learned a new strategy for managing an intense trauma memory.

Just writing this down as a way of trying to process what is happening. I have no idea what’s going to happen to me going forward. It feels very strange at the moment. But at least my current specialist is acknowledging what is going on and I’m being monitored.

[Croix]

Dear ER~

While there may seem to be an element of risk on the new medication I would be pretty sure you have come ot the conclusion it is the best option. Things are never clear-cut, and often it is a question of balancing one thing against another. At least you have regular blood tests arranged to see if things start to go awry.

Coginative function - to think clearly - is a basic need, so every effort to make it as good as possible seems eminently reasonable.

Balancing things is something my first partner had to do. She had a chronic condition that could have proved fatal if she had a particularly bad episode. I was often taking her to ED for emergency treatment.

She was offered a new drug and was told plainly it would have a very harmful effect many years later, but in the  interim the danger was minimized  and she could live a normal life.

She chose the drug and we never regretted it despite the forecast consequences..

I'm glad your psych is a help, it seems very sensible to steer clear of cognitive measures at the moment, and by the sounds of it the feelings and visualizations suit you. The more strategies in your toolbox to deal with  harmful memories the better

While you many not have an idea of what is going to happen to you I will point out you are doing everything possible to make things better and that has to help a lot. There is a lot of truth in the phrase 'making your  own luck'.

Croix

[Eagle Ray]

Thank you kindly Croix,

Yes, I think sometimes it’s choosing quality of life over quantity. I find if I rest in nature as long as possible I usually feel improvement. I was lying down at a coastal location for a few hours recently next to cormorants on a rock. The cormorants rested the whole time too, sometimes preening, sometimes sleeping. In nature creatures do not rush around like us humans. They exert themselves when they need to (e.g. catch a fish if a cormorant) but otherwise they totally rest. I’m often lying down now for much of the day and just have to accept it. If I’m strong enough to get out of the house, resting in nature has a more healing effect than being at home.

I’m gradually learning to accept too the loss of clear thought. I cannot use executive function normally to perform tasks. But the creative part of my brain still works. So playing my guitar when I’m able still flows, or taking and editing photos, which are kind of automated in me. The audiovisual part of my brain is still intuitively there.

I’ve been listening to podcasts on epigenetics. I know my physiology is playing out like my Dad’s did. We had similar early life experiences that shaped us a certain way. I’m trying to heal the pattern. Again, it is essentially working with imagery and what might be considered the non-rational parts of the brain. It’s in that space I’ve learned that trauma healing happens. It’s like relinquishing the controlling brain and letting innate healing mechanisms enact themselves, which will actually happen when we get out of our own way.

My insides hurt a lot with the internal processes of the disease. I’m going to do visualisations on healing that today, in a nature location hopefully as it’s less windy and rainy. My soul is crying out for human connection and I have to find ways to stay in contact with people. I’m starting to admit to people I’m not ok, and people do then reach out. This happened with my neighbour the other day. She said she’ll leave her dog’s lead out so I can take him for a walk or spend time with him if I need dog therapy. He’s a beautiful boy with a beautiful nature. Dogs never cease to make me feel better.

 I think living one moment at a time is the answer, responding to what my mind/body/soul need in that moment.

[Croix]

Dear ER~

It's amazing how much therapy an animal can provide and you must have a lovely understanding neighbor. I'd imagine just being with that dog when you cannot go further might sometimes be  just the thing.

I liked the way you mentioned animals resting unless there is a reason not to. I get a good feeling from Sumo Cat 'supervising' by my left elbow as I type. Sumo gives every appearance of being fast asleep so I presume he is stocking up in case there more unsettled times ahead - apart from keeping me in order of course.

Being able to compose, play and appreciate music, and take and edit photos are accomplishments most people can't do. While I"m sure you are right they do involve the creative side of the brain I would think the  ability to plan and execute are needed too, as is manual dexterity.

I think this bodes well for improvement. Mind you listening to podcasts on a rarefied subject like epigenetics could not be done without a fair decree of mental acuity. There may be a difference between your own estimate of your mental capabilities and the reality. One can at times function when extremely tired, and look back later and be pleasantly surprised at how well one did. I used to find this after too many double shifts.

I've not been a person who has responded well to therapies that are cognitive, and found methods that are descriptive and allow things to 'percolate' though the brain have more success. Maybe we are saying the same thing

Croix

[Eagle Ray]

Dear Croix,

It’s so nice to have Sumo by your side while typing. Their presence is wonderful isn’t it. It does seem to me that animals sensibly rest a lot so that when they do need energy they have it.

 I do know that my brain still has functionality for music and photography and I’m very encouraged by that. And I think listening to podcasts is keeping my brain active on something. The kind of difficulty I’m having is with simple, organisational tasks. I’ve not been able to write shopping lists because I cannot produce a thought about what I need. So if I get to the supermarket I walk up and down hoping I will know what I need when I see it. But I find it hard to actually process what I’m seeing and feel like I’m going to collapse. At my worst I couldn’t make a cup of tea. I put a cup on the bench, then spent many minutes staring in the cupboard looking for a cup when I already had one. Then I could no longer remember why I was even looking in the cupboard. It’s like an extreme fog and blank confusion. Likewise I sat in a hardware store car park for 45 minutes because I couldn’t work out how to get to Coles which was a 3 minute drive away. Tried to locate google maps on my phone, then just stared at my phone because I couldn’t remember why I was looking at it.

But today has been quite a lot better. I had to lie on the couch in the morning, fell asleep and then woke in a kind of altered consciousness. Then I just felt my body release a lot of stuff, including a lot of the restriction in my respiratory tract and the crushing fog in my head. I feel it’s likely partly the trauma processing I did with my psych the other day plus potentially the med starting to help.

So I think like you describe things need to ‘percolate’. I find I’m releasing layer after layer of trauma stuff from the past. It’s like one thing gets sorted then a little later another thing presents itself. Often I can feel quite bad just before my nervous system lets go of the next trauma pattern that’s been trapped in it a long time. It seems a complex organic process between body and memory. So it’s like I’m dealing with the effects of the autoimmune liver condition and trauma stuff, the two which I’m sure are related. I think autoimmune conditions often have a strong correlation with stress and trauma. So feeling quite an improvement today anyway.

Thanks again for your kind support and pats to Sumo.

[Croix]

Dear ER~

I'm afraid I disturbed Sumo with that pat. He is a very dignified gentleman who believes he is entitled to be 'busy' without undue similarity by staff. Never-the less he graciously sends his regards.

Actually he has only just got over MmeKitty pouncing on him with a 'hugzies'

While I can relate to the brain ceasing to function and simply staring without registering it is for a different reason, anxiety. This sends my brain off fully occupied into other areas and the present is left standing still. I'm sure in your case it is going to improve as your physical condition does.

For me the new stock of traumatic scenes finished quite some time ago, and the scenes I see are no longer fresh, one could even say they are well worn. They certainly have a lot less impact nowadays. All the emotions of guilt, frustration, anger and all the rest are now much muted and far easier to cope with.

I hope before long you reach this stage too.

As far as mice are concerned I suspect they have very sensitive hearing and have gone elswhere, putting a lot of distance between themseves and the thunder of tap-dancing possums.

Croix

[Eagle Ray]

Dear Croix,

Ah yes I forgot about Sumo’s need to be “busy”. Many apologies. I return his regards and can perhaps send some kippers instead. I actually made an omelette tonight with kippers and kale in it!

I think I know the kind of blanking out from anxiety you are describing. In my case what is happening now is a bit different. Yesterday, for example, I was able to drive to a nearby town. I was happy about that and seemed to be doing ok. But leaving following a route I’ve done countless times I ended up turning down a different road without grasping it. I not only could not recognise my surroundings but had trouble mentally identifying what I was seeing - like what things actually are as objects. My eyes work but the visual part of the brain seems to be faltering. It’s really hard to explain. Like my visual processing and orientation goes. I had to recruit whatever part of my brain was still operating to get out of the semi-industrial area I ended up in and then get myself home.

So this morning I followed up on my liver specialist’s advice to see a neurologist and will see the GP again on Friday to get a referral. I’m actually feeling more positive because the more I learn about neuroplasticity and things that can contribute to cognitive repair, the more I’m hopeful I can recover the parts of my brain that are malfunctioning. While I had a difficult morning I was able to go to the ocean and photograph birds in flight today. It feels like it helps restore my brain sharpness and motor skills. It’s like something in primal nature and doing something I love helps the brain. Cognitive processing and motor areas of the brain can be damaged in the disease but I don’t see it as a one way street and I’m going to do everything I can to restore functionality.

I’m so glad the traumatic scenes and difficult emotions are muted for you now. It’s a sure sign that healing has been happening. I’m progressively working through different traumas and they are losing their charge one by one. I seem to be now going into the realm of inherited trauma after dealing with both recent and childhood stuff. My psychologist told me about the work of Mark Wolynn who wrote a book called It Didn’t Start With You. I listened to a couple of podcasts of him talking about intergenerational trauma and epigenetics and it’s so directly relevant and helpful to me.

Thank you so much for your kind wishes. One of my residual emotions that still surfaces is anger relating to recent traumas, but I can feel improvements in that even if incremental. I know it’s a toxic emotion so I will work through and heal it.

Thank you for being an ever kind and wise walrus.

[Croix]

Dear ER~

Kippers are one fish I really did not like to have to eat as a kid, they seemed to be a mass of small hair-like bones with just a hint of fish. One expended more energy dealing with them than one gained.  Still maybe Sumo can cope, a kind thought anyway.

I like the way you said "I had to recruit whatever part of my brain was still operating to get out of the semi-industrial area" as it seems to me you are finding successful alternative methods of thinking, or different parts of the brain. A pretty hopeful thing. I don't know much about neuroplasticity , however it does sound another hopeful avenue.

While you may find anger to be one of the toxic emotions I guess we are different in that I've harnessed it on many occasions where otherwise I'd have done nothing. Anger at my previous employers helped my recovery, anger at cigarette companies played a part in my giving up smoking - and so on.

It's a pity you cannot display your photography here, it would be most interesting however sadly regulations prohibit it.

Croix

[Eagle Ray]

Dear Croix,

The kippers I had were from a tin, so there seemed to be little in the way of bones. It sounds like they are fiddly to deal with if freshly caught. I normally get sardines as a back up pantry food when I want a very simple dinner, but this time went for kippers.

There’s a very interesting chapter in the book The Brain’s Way of Healing by Norman Doidge. It’s about a man who had had Parkinson’s for many years and was strongly medicated. He devised his own walking program where he learned to recruit the parts of the brain that still worked to compensate for the parts that didn’t. It was highly successful and he was able to come off all his meds, drastically reduce tremors and appear close to normal when walking instead of the shuffling gait that develops in Parkinson’s. So I think of things like that at the moment as I try to do regular tasks. I did some photography again today which feels like it normalises my brain because it’s something I’ve done for years and really enjoy. It’s such a healing thing to do, plus being outdoors and seeing lots of different birds.

 I’m finding the residual anger I have is toxic because it probably needs to be outwardly directed rather than internalised. So what you are saying about your anger makes a lot of sense. I did go through a phase last year of kicking a box around my loungeroom, throwing cushions into the couch and screaming in my car. Possibly I’m ready for the next anger purge! I learned to suppress it as a child in order to stay safe. I need to keep reminding myself that as an adult I have every right to feel angry about particular things that have happened and perpetrated by cruel, selfish behaviour from others. I think part of me still suppresses justifiable anger which needs to be expressed (non-destructively) to be released and then healed.

I’d love to share photos if I could. I’m off now to have a look at today’s images on the computer before bed. It’s soothing for me to look at nature pictures. I have one amusing one of a duck with a beak full of feathers/down from preening.

Hopefully those kiwis and penguins don’t leave too much of a feathery mess from preening in and around the iceberg, though it could make a soft bed for a walrus to sleep on.