29-5-19
In the past few days I have received quite a lot of messages to which I have not replied, nor have I been answering my phone . . . unless it's been one of our doctors, specialists, dieticians, speech pathologists, or receptionists regarding follow-up appointments. I put my number down as his contact number way back in the day when all this started as he prefers me to deal with all that "stuff". I am better at being a secretary than he it seems. He often can't speak anyway as his throat is still very sore. Only issue I have with that is when the person calling actually wants to speak to him to ask some serious questions, like, how much feed have you been giving yourself? how much water have you been giving yourself? how is your swallowing going?
I always listen in on these conversations as he doesn't always tell the full truth . . . our fave dietician Nat said to me recently "yes he did that to me when he was in hospital the last time" . . . . I get it. I am sure you get it. Just fuck off and leave me alone. I just want to sleep. Don't wake me up to talk on the phone you stupid woman. I will sort it out. I will do it later. I'm fine. I can be an ostrich if I chose to. It's my head.
Sometimes I too go into a funk of sorts. A head in the sand. A bubble. A place where it is easier to focus on one day at a time, one hour at a time, one minute at a time. I can ignore all the other stuff and focus on the simple task of keeping one ear open for his gagging or his vomiting or his snoring, and gauging when I should take him some water to insert or some meds when they are due . . . Thank goodness for Netflix. Binging as you all know is something I am very good at. Not much has changed there . . . . . .
I am not apologising. Just explaining, being brutally honest so you all know why I haven't picked up or texted back.
How is he doing?
Mmmmmm.
Insert photo here to help explain . . .
I have drawn this up to take to the GP this afternoon. He needs repeat prescriptions so he has to go, no excuses. Hopefully once they see this they will suggest what I have been thinking for the past week . . . hospital for a couple of days on a fluid drip. He is dehydrated. His body is not healing as well as it could be. He said last night "it's been 5 months and I feel worse", insert my sad face right here . . . . . "no I am not a doctor" however I have been to every appointment with him and I have listened and taken notes about what he should be having, doing, inserting, outserting, breathing, pooing, peeing, coughing up, sneezing up, vomiting up, . . . . . yes vomiting that's a recent thing and difficult to document in terms of quantity.
It's sometimes hard to listen to your partner and take their advice isn't it? why do we accept a professionals advice? they know more right?
One good thing to note is that his weight is stable . . . unless of course he is not telling me the truth, damn it, I just realised this. I will watch next time . . . .
Looking around my kitchen this morning I had a giggle as it looks very much like a junkies kitchen except way cleaner . . . actually no it doesn't, but you get my drift? meds everywhere, syringes, crushing apparatus, charts, piles of prescriptions and tons of recycling. When are we as a society going to sort out our waste ???? so much packaging. Well I can understand medical stuff needing it but hey . . . . .
. . . . . . for anyone that needs to crush tablets this works a treat:
they are purple. I'm a purple girl.
Which leads me to an arty farty topic . . I am going to a Face & Body Painting Artists Retreat again this year in a few weeks, fingers crossed he will be ok to help himself for 4 days. I will have backup if I need it. He is not happy about that. The back up of which I speak. Tough.
The amount of effort that goes in to this retreat is incredible. The girls who organise it are amazing, they work on it for the whole year prior. This years theme is Alice in Wonderland. The entire place will be decorated to suit the theme and we all dress up for the first night's dinner. Last year I made my outfit from our caravan and it was such a fun thing to do, I sewed most of it on my mum's machine during the day and did a load of cutting, glueing and hand sewing at night in the van, so satisfying. My creative mind was in it's element. I remember missing my old housemate back in Perth on those nights as we spent hours doing arty stuff on our huge dining table, much to his annoyance. Mess is not his thing.
I digress . . . At the retreat I felt fabulous, I felt sexy, I wore a friend's black corset under my, I have to say: Stunning Black Raven Cape . . . yeah it's all about me again . . . (that's what he will be saying once he reads this, ha ha ha). I won third prize for best costume. Happy me, did a dance, drank too much wine and hugged everyone in the room, more than once.
This year I am having a tough time getting my mind into gear. I won't be sewing anything, my artroom is still not unpacked and sorted, I can hardly walk in the room . . and my sewing machine has a pile of random shit dumped on it . . . who knows if it even survived the trip over? Fortunately I have a quirky sense of fashion and can usually whip up an outfit to suit any theme from my own selection of clothes . . . so I am going dressed in this fabulous vest and a hat I found for 50c . . . tie a scrap of fabric around it. Glue some plastic cups on it . . . Ta Da. I am indeed "mad".
It's nearly noon, I have fed the birds, played with the dogs, drank 3 cups of coffee and given him his meds and water, the house is dead silent and very peaceful . . . he is still snoozing away. Netflix until our GP appointment. Thank you all for listening to my dribble. I love you . . . hugs . . . . til next time . . .
FUPC
In the past few days I have received quite a lot of messages to which I have not replied, nor have I been answering my phone . . . unless it's been one of our doctors, specialists, dieticians, speech pathologists, or receptionists regarding follow-up appointments. I put my number down as his contact number way back in the day when all this started as he prefers me to deal with all that "stuff". I am better at being a secretary than he it seems. He often can't speak anyway as his throat is still very sore. Only issue I have with that is when the person calling actually wants to speak to him to ask some serious questions, like, how much feed have you been giving yourself? how much water have you been giving yourself? how is your swallowing going?
I always listen in on these conversations as he doesn't always tell the full truth . . . our fave dietician Nat said to me recently "yes he did that to me when he was in hospital the last time" . . . . I get it. I am sure you get it. Just fuck off and leave me alone. I just want to sleep. Don't wake me up to talk on the phone you stupid woman. I will sort it out. I will do it later. I'm fine. I can be an ostrich if I chose to. It's my head.
Sometimes I too go into a funk of sorts. A head in the sand. A bubble. A place where it is easier to focus on one day at a time, one hour at a time, one minute at a time. I can ignore all the other stuff and focus on the simple task of keeping one ear open for his gagging or his vomiting or his snoring, and gauging when I should take him some water to insert or some meds when they are due . . . Thank goodness for Netflix. Binging as you all know is something I am very good at. Not much has changed there . . . . . .
I am not apologising. Just explaining, being brutally honest so you all know why I haven't picked up or texted back.
How is he doing?
Mmmmmm.
Insert photo here to help explain . . .
Note: Daily requirements are -
1.5 (preferrably 2) litres of Food & 3 litres of Water
I have drawn this up to take to the GP this afternoon. He needs repeat prescriptions so he has to go, no excuses. Hopefully once they see this they will suggest what I have been thinking for the past week . . . hospital for a couple of days on a fluid drip. He is dehydrated. His body is not healing as well as it could be. He said last night "it's been 5 months and I feel worse", insert my sad face right here . . . . . "no I am not a doctor" however I have been to every appointment with him and I have listened and taken notes about what he should be having, doing, inserting, outserting, breathing, pooing, peeing, coughing up, sneezing up, vomiting up, . . . . . yes vomiting that's a recent thing and difficult to document in terms of quantity.
It's sometimes hard to listen to your partner and take their advice isn't it? why do we accept a professionals advice? they know more right?
One good thing to note is that his weight is stable . . . unless of course he is not telling me the truth, damn it, I just realised this. I will watch next time . . . .
Looking around my kitchen this morning I had a giggle as it looks very much like a junkies kitchen except way cleaner . . . actually no it doesn't, but you get my drift? meds everywhere, syringes, crushing apparatus, charts, piles of prescriptions and tons of recycling. When are we as a society going to sort out our waste ???? so much packaging. Well I can understand medical stuff needing it but hey . . . . .
. . . . . . for anyone that needs to crush tablets this works a treat:
I am keeping all these syringes, planning a FUPC art piece for the garden . . .
Which leads me to an arty farty topic . . I am going to a Face & Body Painting Artists Retreat again this year in a few weeks, fingers crossed he will be ok to help himself for 4 days. I will have backup if I need it. He is not happy about that. The back up of which I speak. Tough.
The amount of effort that goes in to this retreat is incredible. The girls who organise it are amazing, they work on it for the whole year prior. This years theme is Alice in Wonderland. The entire place will be decorated to suit the theme and we all dress up for the first night's dinner. Last year I made my outfit from our caravan and it was such a fun thing to do, I sewed most of it on my mum's machine during the day and did a load of cutting, glueing and hand sewing at night in the van, so satisfying. My creative mind was in it's element. I remember missing my old housemate back in Perth on those nights as we spent hours doing arty stuff on our huge dining table, much to his annoyance. Mess is not his thing.
I digress . . . At the retreat I felt fabulous, I felt sexy, I wore a friend's black corset under my, I have to say: Stunning Black Raven Cape . . . yeah it's all about me again . . . (that's what he will be saying once he reads this, ha ha ha). I won third prize for best costume. Happy me, did a dance, drank too much wine and hugged everyone in the room, more than once.
This year I am having a tough time getting my mind into gear. I won't be sewing anything, my artroom is still not unpacked and sorted, I can hardly walk in the room . . and my sewing machine has a pile of random shit dumped on it . . . who knows if it even survived the trip over? Fortunately I have a quirky sense of fashion and can usually whip up an outfit to suit any theme from my own selection of clothes . . . so I am going dressed in this fabulous vest and a hat I found for 50c . . . tie a scrap of fabric around it. Glue some plastic cups on it . . . Ta Da. I am indeed "mad".
not sure about the cups . . .
It's nearly noon, I have fed the birds, played with the dogs, drank 3 cups of coffee and given him his meds and water, the house is dead silent and very peaceful . . . he is still snoozing away. Netflix until our GP appointment. Thank you all for listening to my dribble. I love you . . . hugs . . . . til next time . . .
FUPC
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