jmgoyder

wings and things

My favourite duckling!

Okay, so I wasn’t going to name the ducklings but I can’t help myself now because they are surviving so well AND chasing me everywhere. They somehow know that my voice means lettuce or bread and they pretty much attack me every time I step out the door.

‘Michael Jackson’ is the dancing duckling and, before today, I thought the twins were identical until I noticed that one had a a lot of freckles (‘Freckle’) and the other one had more of a mish-mash of colouring and personality and beauty, so I have called her ‘Misha’.

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I know I shouldn’t have favourites and of course I love Michael Jackson and Freckle and Misha equally but let’s just say that for this week I am quacking with Misha!

Misha is named after someone with a better name – and this is sent with a love quack to her!

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The advantages of having pompholyx

Sorry but I am a bit obsessed with my condition. This time I have decided to give it a positive spin.

The advantages of having pompholyx:

1. You cannot go anywhere near detergents of any type, so you are not allowed to wash dishes, clean the bathroom or do the laundry, which means someone else has to do all of these things for you. (Thank you, Ming, oh and don’t forget to vacuum the house).

2. If you have freckly hands, and you don’t like your freckly hands, you will love how, once the skin peels off, so will the freckles.

3. Exercise is not a good idea if you have pompholyx on your feet so, even if you weren’t madly exercising every day, now you don’t have to feel guilty about that.

4. It is a conversation starter. People tend to find it quite entertaining to hear about your pompholyx, and fascinated by your suppurating sores. It is, however, best to keep these show-and-tell conversations to less than 10 minutes I’ve discovered.

5. It’s good assertiveness training. For example, when people tell you to stop scratching at your hands, you can say (loudly, if you wish), “I will scratch at my hands if I want to scratch at my hands!” I have had to say this to Anthony, Ming and friends on several occasions.

6. You have learned a new word – pompholyx (which derives from the Greek for ‘bubble’ I think).

7. If someone you only vaguely know sees you at the post office and wants to give you one of those spontaneous hugs that you are not in the mood for, you can throw your hands up and say “Don’t touch me – I’m diseased – see!”

8. It’s also a good way of frightening small children who are behaving brattishly, although I haven’t tried this yet.

9. Doctors are extremely impressed with your extensive knowledge of a condition they have never heard of and they look at your hands and feet with the glee of a new discovery. This gives you the brief glow of what it must be like to be on the red carpet.

10. You discover that you have a tonne more of empathy for all who are suffering any kind of pain. This is the best advantage by far.

Ming did the washing, vacuumed the house, did the grocery shopping and saw Anthony this morning. This afternoon he has gone back to see Ants, go to a movie and then he is bringing pizza home. Wonderboy!

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When the carer gets sick

It is now a few weeks since I was first afflicted with pompholyx on my hands and I have now seen three doctors (well, four, if I count Dr Google) and I now have all the antibiotics, steroids and ointments I should need to get rid of it. The blisters on my hands have now been replaced with peeling, bleeding skin and I am finding it painful to do everyday, normal things like turning a tap on and off, prepare a meal and even holding the steering wheel of the car hurts. I’ve read heaps of articles about pompholyx and seen some gruesome pictures that look just like my own hands, so I feel quite knowledgeable about the condition now.

A few days ago I noticed a few blisters on my left foot too but, like an idiot, I just kept hoping they’d miraculously go away, but this morning I woke up to two very swollen feet, with all of the toes on one foot covered in sores and one on the other foot too. (I think my feet must have been scratching each other in my sleep!) The left foot was so painful that when I jumped out of bed to take a closer look, I got a shock when I could hardly walk.

My first thought was how could I take Anthony out for afternoon today? That was my plan and I had told him yesterday when I had two normal feet. As usual my incredible mother came to the rescue and visited him and I spoke to him twice on the phone, the first time quite tearfully but the second time (my mother rang me from his room at the nursing home) more cheerfully.

There are a lot of mixed opinions about pompholyx but one thing I have found in almost everything I have read about it so far is that it can be caused by excessive perspiration. This makes a lot of sense to me because, despite the fact that I have always had a problem with this during our Australian summers, it has never been as bad as this year. In fact, a few weeks ago, I joked with a friend that I might have to get botox to stop it (I had read about this treatment and this was just before the pompholyx hit me). It turns out that this may well be a necessity for me if the pompholyx doesn’t go away with all the other stuff I’m taking for it. I could get my frown lines done too – haha!

On the scale of diseases, this is certainly minor and I know many people and friends who are battling much more severe health challenges, diseases, chronic pain and, yes, grief. So I feel a bit embarrassed to be so upset about what has suddenly happened to my hands and feet, but the main reason I am so upset is because it is obviously going to stop me from seeing Ants for awhile.

Ming, who did a whole bunch of errands and other jobs for me today, said (during one of the Home and Away commercial breaks), “I’ll do anything you want me to, Mum – just give me a list!” Then we had a conversation about stress:

Ming: You must be really stressed – look at your foot!
Me: I am now twice as stressed as I was before you said I must be really stressed so shut up!
Ming: Why can’t you just have fun, Mum?
Me: I can’t really have fun with this thing with my hands and feet.
Ming: I could take you out for lunch, to the movies even – popcorn? Pizza? I’ll do anything!
Me: Could you do a load of washing, vacuum the house, wash the dishes, do the groceries, visit Dad and bring me some panadol tomorrow?
Ming: Oh – okay. That’s a lot of jobs and you haven’t given me much warning.
Me: It’s called initiative, Ming.
Ming: No, no, no – you know I hate that word!
Me: Well guess what – I hate the word stress!

The hardest thing about getting any sort of sick when you are caring for a loved one with a proper disease (Anthony) and another one who has just had a second lot of spinal surgery (Ming) and all the other people who you care for, is the feeling of utter helplessness that you can’t help because you are sick too. For me it is, hopefully, just a temporary sick but it may go on and on (pompholyx tends to do that).

Apart from the spasmodic asthma attacks that began four years ago, when I was still working at the university, Ming was still at school, and Anthony’s health was beginning to deteriorate, this is the worst diseasy thing that has happened to me. I’m a bit scared I guess because I’m the carer – I can’t get sick! I am needed!

To those bloggers and friends and relatives who know this feeling, I salute you for your courage and honesty in talking so openly about these things. My empathy has grown a thousand-fold because of this pompholyx thing.

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Daybreak, heartbreak and other breaks

Yesterday, Ming went to see Anthony at the nursing home at around noon because, even though I didn’t see Ants on the weekend (because I was having a bit of a break with my friends at a nearby chalet), on Monday my stupid hands had become a bit infected and very sore and I felt unable to make the journey into town. But by 4pm I couldn’t stand not seeing Ants so I drove into the nursing home and arrived in Anthony’s room at 5pm.

Ming had already told him, earlier in the day, that I wouldn’t be in, so he was surprised and absolutely overjoyed. “My beautiful, beautiful girl,” he kept repeating. His dinner arrived and we shared a beer and I helped him with food, phone and television and then I had to go home again. I was probably in there a bit over an hour and, by the time I left, Ants was a bit confused as he always is in the evenings now. But he was happy! And he didn’t mind that I was going home at all. For me, the relief that he could say goodbye to me happily was so wonderful that I drove home on a bit of a high.

But every day is different of course. So today, when Ming and I visited for a couple of hours in the early afternoon, Anthony became so sad when we had to go (including begging us to take him with us) that it broke my heart all over again because he even articulated it: “When you both leave, I get so upset.”

Ming is better at handling this than I am. “Dad – pull yourself together! We’ll see you tomorrow!” For me it is much more difficult to extricate myself from Anthony’s heartbreak so I tend to prolong goodbyes with so many kisses and hugs that Ming nearly vomits!

I guess, because I don’t have a routine of what time I visit Ants (except that it is nearly every day), and the fact that I am not bringing him home so much, because he is too heavy now and quite often unable to move or walk without help, every single day has become an unpredictable journey of fear. The other wives of the other men Anthony’s age all have a routine; they visit their husbands at the same time every day, but these wives are in their 70s or 80s and live nearby.

This is not me complaining or asking for advice; it’s more of an attempt to give some insight into the unpredictable nature of PDD (Parkinson’s Disease Dementia) and how one day, no matter what time of day, Ants might say, “Okay, see you tomorrow, Jules” and the next day it might be “Please don’t leave me, Jules!” I can never know what to expect in any way at all – again, no matter what time of day, although evenings are worse – lucidity, confusion, joy, fear, confusion, love, hope, conversation, confusion, helplessness, uncertainty, disorientation, confusion, misery ….

To grasp my husband’s big, old hands with my younger infected hands today was very painful because he had a grip I haven’t felt for a long time – he held on tightly until I said “You’re hurting my hands, Ants!” and he immediately released them. It was worth it though, because he lost his grip a couple of years ago (PD).

On a lighter note, I am having a break from cooking tea for Ming because, for the first time ever, he is doing it all by himself – yay!!!!!!!!!!!!!!

And the ducklings took a break from Godfrey (when he wasn’t looking!) to take bread out of my hands.

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It is quite possible, of course, that, due to recent circumstances, I have either had, or am having, a nervous breakdown. That would be a very convenient excuse for not answering the phone, not opening a month’s worth of mail, not keeping up with blogs, and blogging in a way that is almost ridiculously high and low – sorry!

Oh, Home and Away is on in 5 minutes – now that is a break from reality – haha!

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Pool party

Late yesterday afternoon, I sat outside to watch, feed and water the birds. As usual, Gutsy9 joined me at the picnic table and stretched her neck out for me to stroke and when I stopped, she either bit my toes or gave me the cold shoulder.

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G9 is a bit jealous of the new peachicks which is probably why she has suddenly become all lovey-dovey again (she went through that teenage aloof thing a while ago). As soon as she hears the back door open, and my voice, she rushes at me making the little chirpy noises she used to make when she was a baby.

For those who don’t know, I discovered G9 outside over a year ago, obviously abandoned by whoever her mother was, so I raised her myself. During her first day with me, I had to meet friends for lunch so I took her with me, hidden inside my shirt and, for the next few weeks, she spent most of her time either on my shoulder, or on the keyboard of this laptop, or in a canary cage with the door open. I took her to the nursing home to see Anthony, took her to my mother’s house for Christmas, took her to the vet when she got underneath my office chair and I accidentally injured her toe, then, eventually, took her outside to integrate with her kin.

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To begin with, the other peas treated her like an alien because she was so humanized! But over the last year, she has actually become a bit of a leader, especially in the bread-stakes. I only have to open a packet of bread and she hears the rustle of plastic and zooms straight to the back door, sometimes crashing into the window, with all the others following, hoping for bread.

But now, with Queenie and the new peachicks, G9 seems to have become a little insecure, and very needy of me, almost as if she is nostalgic for our mother/baby months. It’s hilarious! She watches me watching them and pecks me quite violently sometimes.

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Oh yes, the pool party. The following photos are of what must have been a committee meeting but it did kind of look like a pool party.

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They all chatted for about an hour and the conversation seemed quite serious. I think it was about protecting the new peachicks but I’m not sure. G9 sat with me and watched rather jealously, so I snuck her a bit of bread from my pocket.

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Tom Attwater Is Dying. His Daughter Might Die, Too. The Letter He Left For Her Is Unforgettable.

Vic's Final Journey

I found this on Len Carver’s Kindness Blog.  This is about a brave young man fighting to keep his daughter alive.  Please repost!  If you can please donate to his worthy cause.   Posted on  February 12, 2014  by  Kindnessblog Smith

Tom Attwater is dying of a brain tumor, but he isn’t worried about his cancer. Instead, he is trying to save his 5 year-old daughter from her own.

tom attwater

Tom Attwater with daughter Kelli and wife Joely

He has vowed to raise approximately $820,200.00 for her cancer treatment, even if he wouldn’t be around to see her go through it.

Now Tom is almost half way to his fundraising target he is more adamant than ever to reach it. Tragically his deadline is short as his latest scans show his brain tumour is growing.

He says: “These days people make bucket lists, and the very top of mine – the…

View original post 1,741 more words

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Adjournment

Ming and I were in court again today but, due to a glitch in communication between the police and our lawyer, his case has once again been adjourned – for another three weeks.

I thought today was the day Ming would finally plead guilty so I was a bit agitated as we waited in the waiting room with a fascinating assortment of other criminals. Ming was dressed in a white, collared shirt and black pants (not jeans) but, on the way into town this morning, the button on his pants popped off so, not being the type to have a sewing kit in the car, I just told him to make sure the zip was up when he faced the magistrate but not to fiddle with it too much because that might look a bit odd. This was made a bit difficult by the fact that his shirt had to be tucked in at our lawyer’s advice.

It was weird to be sitting and waiting, more worried about Ming’s pants than the outcome, and my recent hand condition (the pompholyx I wrote about awhile back, which has come back again), started to erupt in front of my eyes. It was like a scene from a science-fiction movie!

All of the little blisters on my hands started to join each other until, one after another, big blisters formed – between my fingers, on the palms of my hands and on my wrists. Okay – gross-out alert here – then, as I rubbed my itchy hands together nervously, all of the blisters started to burst and leak, then re-form, again and again. Ming was so disgusted and concerned by my leaking hands that he, too, lost focus on the court case. This was our conversation before the hearing:

Ming: Will you stop rubbing your hands, Mum!
Me: Look at this blister! OMG it just appeared, Ming!
Ming: Don’t touch it, Mum. Oh please – I am going to vomit!
Me: Your zip is down again.
Ming: What? Oh, okay, don’t worry, I will pull it up again when I stand up.
Me: There’s the lawyer Ming!
Ming: Don’t shake his hand, Mum, please!
Me: Don’t show him your zip, Ming, please!

Lawyer: Hello, you two.
Ming: Hello (stands up awkwardly to shake lawyer’s hand whilst surreptitiously pulling up his zip).
Me: Hello (sitting down with my hands in my pockets but with a big grin on my face to make up for not shaking his hand).
Lawyer: It could be another adjournment.

He was right!

[Note: I am taking off tonight to spend time with friends at a chalet nearby so will catch up with other people’s blogs on Monday – in meantime have a great weekend!]

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Blog notification problem

Lately I have become aware that I am not receiving blog notifications (via email) from bloggers I follow. Is there a WP problem or is it just me?

If I haven’t commented on your blog lately, this is the reason (well, apart from the neglect factor ha!)

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Bed-time magic: how a peahen puts her chicks to bed

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The smile

Not quite sure how a light-hearted bird blog transmogrified into Julie’s gutspill but I am hoping to turn that around again soon. Tomorrow is Ming’s second court hearing so I guess I am a little bit anxious because I have just found out that this is when he will plead guilty. Apparently there is no risk that he will be whisked off to jail tomorrow so that is good and I am no longer sure what the hell I am crying about any more. Sad and happy tears look exactly the same, so it’s confusing.

Queenie camouflages the chicks so well that they are almost invisible to predators. I wish I could do this for Ming but he is a little too big and obvious!

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Yesterday afternoon I took two beers into the nursing home and Anthony and I had a drink together (the way we always used to at home). I apologised for my melodrama yesterday and he just said ‘Any time, Jules – I know you.’ Mmmm!

Then we had a rather weird but lovely interchange:

Ants: I just want you to come home.
Me: You mean here?
Ants: Yes, here – Bythorne.
Me: We’re not at Bythorne now, Ants, we’re at Wattle Hill Lodge.
Ants (trying not to look confused): That’s right.
Me (trying not to notice his confusion): Exactly – this is our second home.
Ants: So why are you leaving?
Me: Because I have to take dinner home to Ming.
Ants (hallucinating): Is that Ming there in the corner?
Me: No – he’s at Bythorne.
Ants: So where are we now?
Me: Wattle Hill.
Ants: So where is home?

At this point, I felt a bit lost, so I knelt down in front of him and threw my arms around him and said (rather profoundly I think now haha!) “Wherever you are, Ants, that is my home.”

And I finally got a bloody smile!

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