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~

I'm afraid all the inebriated kiwis leave is piles of empty Lion Nathan Speights beer bottles, and what the penguins leave behind is best not mentioned other than to say if fish goes in then .... well you can imagine. Neither is suitable for walrus who is fortunately quite happy to snooze on a beach or ice-floe.

Kippers are never freshly caught:)

I've not tried tinned ones, perhaps if I opened a tin for him Sumo might appreciate them. It sounds as if you plan for those times when you do not have enough energy for cooking. Plus I'm told fish is brain food - can't hurt.

I remember someone I know who suffered a stroke, he recovered pretty well however when he walked his leg did not go forward to take a step but swung out then forward in a sort of semicircle. He told me it was the control had gone and he was using alternate paths to move his leg.

That apparently in itself is not that unusual however after a lot of practice with physio he was able to swing his leg forward normally, apparently having trained the brain to use alternate ways of controlling. A very hopeful sign.

As for anger, that 's rather insightful to realise you suppressed anger for safety, not everyone does who has had a threatening and toxic childhood. I think mine was externalized because it was targeted, not on me, but on  other things like cigarette companies leading me down the garden path as a child wiht packets of 4 cigarettes (well within pocket mony reach for many kids).

Do you use a screen-saver or similar to give you a whole string of pix one after another?

Croix

[Eagle Ray]

Dear Croix,

Oh dear, yes, those kiwis are quite irresponsible. And the penguins are not making things very hospitable either.

I didn’t know much about kippers so I had to look them up and learned they are herring that have been preserved in some way. I had assumed they were something like sardines. Thank you for enlightening me on a fishy subject! Yes, I think oily fish in particular are meant to be good brain food.

 I’m glad your friend was able to recover his walking movement. My Dad had a minor kind of stroke where he lost the ability to speak most words and could only write nonsensical sentences. But after being put on a blood thinner his normal speaking and writing ability came back. It was like he had a new lease of life after what would have been a confusing and frightening few days. It’s like you appreciate things so much after temporarily losing them.

It’s amazing what cigarette companies did to even entice children. Most of my relatives smoked so when we went to family gatherings it was just what everyone did. That was when I was small. Then the anti-smoking movement started to gain traction and gradually many of them started to quit. But up until then I remember the cigarette ads at the movies and dispensing machines in department stores and supermarkets. It was just part of life.

 I don’t currently have a screensaver activated on my computer. Having a changing collection of images is a good idea. I was really happy with two portraits I got of wood ducks yesterday, one male and one female. While some people doing wildlife photography dress up in camouflage gear and try to hide themselves, I more just sit quietly and I find usually some animals come by you sooner or later. Because they can see you already they don’t get a big fright compared to say a human trying to hide from them in a yowie suit or similar. I find that way I get curious eye contact from the animal who is engaging with me. I had a duck swim across a lake once to where I was sitting, do a swim-by to check me out, and then swim back across the lake again. I just love being out there amongst all the different creatures.

 I hope you have a nice beach or ice-floe for sleeping tonight!

[Croix]

Dear ER~

Yes kippers are herrings, smoked and squashed flat. They make excellent gifts for those not in favor.

I'm glad your dad recovered his abilities, it would have been a very frightening time. It does show how improvement can come, sometimes from unexpected directions.

Cigarette companies certainly fooled me and convinced me smoking was the path to being cool, adult and sophisticated. One of my accomplishments I'm most pleased with is giving up some 25 years ago.

I think you must sit pretty still and appear non-threatening, plus have a good eye for what will make a decent picture. Maybe that duck swam over to see if you were a potential benefactor, and swam back disappointment:)

Croix

[Eagle Ray]

Dear Croix,

Well done on giving up the smoking. I’m sure it’s not easy. My neighbour is trying to at the moment but finding it hard.

The duck that did the swim-by was a female Hardhead, apparently Australia’s only true diving duck that dives down to feed as opposed to just tipping bottoms up in the water or grazing on land. She posed for me beautifully in the late afternoon light as she glided past, but was possibly swearing in duck language under her breath when she found I wasn’t in fact a benefactor:) I don’t feed wild birds but where people are they not one of the species I’ve ever seen being fed or getting close to humans like that. So I felt blessed to have her swim by.

 I had a good visit to the doctor today to get referrals and met other local people in town and had nice chats. I had a blood test early for which I’d fasted so treated myself to a toastie and coffee afterwards where I chatted to a regular at the cafe and patted his gorgeous little dog. He said she always brings a smile to people.

 I had to sleep for 4 hours in the afternoon which seems to have become my normal now. But I’m accepting that is where my body is at and I have to go with it. I dreamed a lot but can’t remember any of it now. I’m finding that the afternoon sleep gives me the strength for a short walk and a few evening chores. I lit the fire tonight as it’s very cold and it’s starting to die down now in the gentle way that fires do.

 I feel like I’m coming to terms with my limitations now. I may regain more strength and energy or I may not, but I am learning to be restful in any case. Actually the flames just burst to life again. Maybe that’s the fire’s way of saying you ain’t done yet!

Wishing you a peaceful night on the iceberg, ice floe or beach, wherever you are. I expect walruses have less need for fires and are well-insulated.

[Croix]

Dear ER~

"Well insulated" is a very kind way of putting it:)

I hope your dreams are pleasant ones, even if you can't remember the specifics one can feel more cheerful on waking.

We sometimes feed ducks etc but normally use bird seed, though others use bread and we have occasionally (if it has turned blue). You have explained something we have observed, when feeding naturally they tend to be nearer the banks in shallower water, not diving in hte middle of hte river. I guess they are not Hardheads, just wood-ducks, mallards and muscovys

Having an afternoon nap sounds eminently sensible, after all a day is not a marathon, taking breaks can be far kinder

It sounds as if you have had a pretty reasonable day -I'm glad, I've had one too

Croix

[Eagle Ray]

Dear Croix,

I’m glad you had a good day yesterday. Speaking of insulation, today has been the coldest day I’ve experienced here. The air has been icy. I went for a short walk in a forest area. When the sun came out I stopped to stand in a spot where the sun was getting through. I saw a fairy wren a few metres away on the path with its tail up as usual hopping about, except it was moving slower than usual as they are normally quite hyperactive. I was briefly distracted by my phone. I looked up again and could see it appeared to be on its side and not moving. I went up to him (he was a male in non-breeding plumage) and he appeared to be dead with eyes closed. In case he was just in shock from the cold I picked him up to try and warm him. I took him to a nearby tourist office. The woman there thought he was definitely dead. Still, just in case, I took him to my car and kept him warm there for the next 2 and a half hours. I talked to my friend on the phone while I held him. But to no avail. I had to accept he was gone. I carried him back to the place I found him and put him on some soft leaves off the track. I cried on my way back to the car but felt I was able to help his little spirit as it left his body by caring for him. It was like he literally died from the cold.

I’ve been with some of the people in my life during and after death in the past few years, and it helped somehow caring for this little wren just as I did for loved ones. It’s an acceptance of the life cycle and while it brought up grief it was also healing somehow, caring for this little being. Fairy wrens are the most gorgeous affectionate little birds. The males actually pick flowers and give them to the females. Whole families snuggle together on branches. They are the epitome of togetherness.

I have such a strong instinct to nurture things and have thought about being a wildlife carer. It is a huge commitment however and does require specific training. With my health issues I’m probably limited in my capacity to do it, but if I can take photos of beautiful wildlife and educate people through that, that’s something I’d love to do.

So tonight my heart feels full of love for this little bird and all beings, even though it was so sad for him today. I’m so lucky snuggled under a blanket with my fire going.

[Croix]

Dear ER~

You are a wildlife carer, and care for humans too.  I have Superb fairy wrens in my garden a fair bit (Sumo is too lazy to be a threat ). I even see them occasionally in the winter (in plain brown) which is surprising,  I've no idea how they  manage the cold. I'm told the male's blue mating plumage shines under ultra violet light.

They are a delight to see hopping around. I believe they live around 5 or so years and one would expect the  winter would be the time of high mortality. It is sad and I realy like the way you helped his little spirit.

I have my fire going too, wihth Sumo supervising as usual.

Croix

[Eagle Ray]

Thank you Croix,

Yes, they are delightful little birds. Picking him up I found, as I expected, he was as light as a feather, and so incredibly delicate. They are perfectly formed little beings. I’m glad you have your own fairy wren population.

 I am right in front of my fire at the moment. It never ceases to mesmerise me. It can die down and come alive again several times as different logs are in the process of burning. It’s rainy, windy and cold outside so it’s lovely to be next to it.

I’m sure Sumo does an excellent job of supervision. It’s wonderful to have his presence.

[Croix]

"It’s wonderful to have his presence". Sumo quite agrees

-C

[Eagle Ray]

I just need to write down what is currently depressing me. I was advised a few weeks ago by my liver specialist to see a neurologist for associated cognitive symptoms. I saw a local GP who wrote a referral. I’d done my research and found potential neurologists that may have knowledge relevant to my condition. The GP referred me to someone else saying this is who we usually refer people to. He at least wrote a fairly useful referral letter that gave the name of my liver specialist and why I was being referred.

 I subsequently contacted the office of this neurologist to book an appointment. I was told she has nothing till January. The receptionist asked what it was for. Upon my answer she told me I should see someone else as the neurologist mainly only sees people with epilepsy.

So I go back to the GP today but my usual GP is away so I see someone else. He agrees to refer me to one of the people I’ve researched. He organises a copy of the referral to be faxed and only after gives me a copy as I’m at the reception desk about to leave. Looking at it now he has stripped out all relevant info including the details of the liver specialist and why I’m being referred with nothing but a list of my medical conditions which explains nothing to the neurologist. Details have been removed in medical history also. Upon calling the neurologist’s office I’m told he will have to look at the referral first and I’ll get a call next week as to whether he can see me or not. I try to verbally explain why I’ve been referred but I can tell from the receptionist’s response the patient’s words have no validity, only the doctor’s words on the referral.

So based on the limited referral with basically no helpful info on it, I’m half expecting this neurologist to say he won’t see me either. I’m just exhausted from dealing with these issues, from clearly communicating with medical people only to have the info I give them truncated and distorted so that it isn’t at all helpful. I expect I may have to go direct to the liver specialist to ask him to refer me as he is the one urging me to see a neurologist, but he may say that’s your GP’s job. It’s like being on a meaningless merry-go-round where no one is listening or communicating properly.

I think it’s just the severe isolation trying to get help that’s distressing and depressing. I explained the disturbing cognitive issues I was getting to a GP more than a year ago. Other than a standard blood test it wasn’t further looked into. It’s taken this long for the issues to finally be recognised by the liver specialist as part of the condition I have but I feel like it will be a very long time again before I can see anyone who can investigate and help with the cognitive symptoms. Sorry for this rant. I just feel stuck in a hopeless echo chamber. I’ve just had such demoralising experiences with the medical system. It’s just making me cry now as I struggle on with cognitive confusion and it seems likely a long time yet before I can get any real help. I will return to my usual strategy for now which is researching and solving things on my own. But I just feel so alone.