It's gonna be a PJ's day.

 

The rain is pouring down but it's not cold just pleasantly warm after the last few days of summer heat. Xena is still asleep on my bed.

Chris is watching TV and I have got the breakfast dishes soaking in hot soapy water. The house is tidy and cosy. Life is good.

I woke up early and left Chris to sleep. I heard the birds calling each other and watched as my beloved magpies came down searching for some left over sausage among the rice dish I put out for them last night.

Carefully opening the sliding door that opens to the garden where they congregate waiting for me to feed them, they sat only inches away from me. Gradually they are coming closer to feeding from my hand. 

The washing machine is churning away at the load of clothes I am washing. I try to do a load a day so as not to use up all my spoons in one hit, folding them and putting them away. 

People with fibromyalgia would understand the need to pace oneself in order to achieve some completion of household tasks. There's so much job satisfaction in even doing one load of washing and putting it away. 

I have some steak thawing for dinner tonight. I am planning on cooking a vegetable intensive beef stew.

With the cooler weather and rain, the menu begs for a stew...

I still haven't changed out of my pajamas and it's 1pm but I don't really care. We aren't going anywhere and I am feeling pretty laid back and a tad achy. It's the change in weather.

It was a pretty slow but pleasant morning with Chris making me some breakfast and a cup of tea. The panadol is kicking in helping me with the aches and pains of fibromyalgia that's reacting to the weather change, but I am glad to report that it's not a fibro flare per se.

So in spite of aches and pains, I am feeling pretty good today, but even so, it's gonna be a PJ's day. 

More than a place to sleep

 

Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.

Physically its more comfortable to sleep in. 

Psychologically its more inviting.

It makes the room visually more esthetically pleasing.

The bed's the centrepiece of the room like in a painting. 

It gives the illusion of order and calm.

It uplifts my spirits when I come into my bedroom.

With fibromyalgia, angina and back problems, I make mine but often get back in it. So I remake it.

When I make it, I don't get on my knees as they are broken and I do not do hospital bed mitred corners. I pull up my top sheet, then turn back the minky blankets. With arthritic hands, the only tucks I do are at the bottom of the bed to secure the bedding...

But, being honest, I sometimes let it go when I have a fibro flare- being satified that the sheets and bedding is clean. But the majority of times, my beds are made. 

Beds are more comfortable made up or at least straightened and are more than a place to sleep.

We're going for a run

As you know, I have had to resort to using a wheelchair when I go out.  It is not something I am happy about, but it is a necessary part of adapting to my new normal.

Along with walking, there are a few other things I have had to adapt to as well. 

I sit on my shower seat. When I get out, I sit down again and dry off. That's about all the time I can stand.

Most times, Chris stacks and unstacks the dishwasher and this has stopped me having to stand and bend.

I always use the dryer even in good weather. I miss the smell of sun-dried clothes, but it is what it is.

I do make my bed for company, but even so it is just pulled up quickly, nothing fancy. I can't stand to tuck it in and I can't bend either...

With the ageing Australian Government Package, I have a support worker come every two weeks. She changes our beds.

Also within this Home Care Package, I can order ready cooked frozen dinners from Lite N Easy. The meals are designed by a dietitian and cooked by a chef. They are quite delicious and save me from having to stand to cook and I know we are eating well.

I am grateful for all this as it allows me to still be mistress of my home in spite of illness, pain and disability. But even so, I find myself longing for the soon rapture of the Church.

It will be so glorious to not only see my Saviour, but to be able to breathe easily, feel joy and go for a run...

Help until He comes

Today was a busy day in that I was organising aged care help for Chris and I ... we arent coping all that well... lots of phone calls that had me on hold for at least an hour each 

After nearly a whole day on the phone, I am happy to report that we were approved for help. Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

I am hoping that God takes us Home soon. That is the best thing to dwell on. But meanwhile, while we wait, my house could do with a deep clean, our toenails are feral and we need them properly done. We cant take a bath and we help each other shower but a grip bar and telephone type shower have been promised to us under home maintenance, and that would stop the suffocation feeling of water pouring over our head when we can't breathe at the best of times.. 

We cant drive most times and we will need transport for a personal consultation with our doctor and the help they offer is needed now.  Nothing to do with lack of faith or not watching- but we have to be practical. 

Heart failure is a beast that stalks us both and is a progressive disease. Peripheral neuropathy in our feet and legs is a constant pain that stops sleep.  A physiotherapist may be able to help or offer exercises to alleviate it.. all things that need attention now. 

Including last but not least, changed bed linen that can be done without banging gnarled fingers and hands... and while we look with anticipation and longing to be Home, the daily necessities of life are calling. 

We rely on God to help us and are grateful that He has blessed us with the help we need...until He comes. Our life style is always if the LORD wills.... we consider ourselves blessed that we are eligible for the help that's come our way, until He comes! God willing, it will be soon. But if not, we will be accepting help to keep going until He comes.

 © Glenys Robyn Hicks

" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

Time on the phone paid off

After nearly a whole day on the phone, I am happy to report that we were approved for help. 

Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. 

Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

Once a year someone will come and wash our windows for us. The is all part of the Australian Government's plan to keep seniors in their own home instead of a nursing home.

I had to access three different goverment bodies today via phone with a waiting time of an hour or more, but with the ability to be approved so quickly and for the blessing it will be, the time on  the phone paid off.

 

A spoon is a spoon!

 

So my polymyalgia rheumatica has kicked in again, and coupled with a fibromyalgia flare, the pain is just excruciating.

I have decided the pain warrants some Prednisolone so I took 25mg of it these last two mornings. It makes me feel a bit antsy but I can now bend my neck, lift my arms to brush my hair, and the pain around my temples and headache has gone, along with the TMJ.

It is risky taking Prenisolone, but I had to weigh up the pros and cons and decided that I simply couldnt bear the pain any longer. 

A happy consequence of it is the fake energy has made me channel it into housekeeping and my house hasnt looked better! 

Today I have run the Roombas, washed the clothes and cleaned my kitchen. I am going to do sausages in the slow cooker for dinner tonight.

The steroids are elevating my blood sugars as I am diabetic. It's making me feel drowsy. I can see a nana nap in my future if the Pred will allow me to sleep.

I really dont care where I get my energy from these days: fake energy from steroids is good. After all, a spoon is a spoon!

The spirit is willing

 

So I decided to take a bath today. No mean feat when one is chronically ill or disabled. It turned out to be a big mistake.

Chris helped me get into the bath as it's pretty high. I no longer have my bath lift  so that made things a bit harder again.

It was so difficult to make my knees bend enough to sit down in the water, but when I finally was in, the water was so soothing. I lay there for about 40 minutes, just luxuriating in it.

The loofah did a marvellous job of exfoliating my body and once again, I was so glad to actually be able to bathe.  Then came the hardest part: getting out.

I tried every way to get out without kneeling on my sore knees, but in the end, I had to. There was no other way. It hurt like crazy!

Today my knees are aching and it is with sadness that I realised-(not for the first time) that it will have to be showers from now on for me.

I have no painkillers here so I am just taking paracetamol... which is pretty much useless for strong pain.

So I have made a short list today for chores I want to do.

I have put away the online groceries that came this morning.

I have done a load of washing that is in the dryer.

I have a slow crocker full of pork sweet and sour rice for dinner tonight.

After all these years of chronic illness, mainly fibromyalgia and shuermanns disease, I think I have worked out how many spoons I can save during a bad day.

As it is written," The spirit is willing, but the flesh is weak!" Matthew 26:41  Indeed it is! 

You just got to pass it on!

I ran our new irobot roomba vacuum last night. Xena hated it and ran under the bed. Roomba chased her under it and she came out like a scalded cat and bushy tailed. 

Don't worry, she got lots of cuddles afterwards, but it was the funniest thing that's happened in a long time. 

I highly recommend a roomba. It's very easy to operate and manages interchanging between carpets and tiled floors. It's really great when you have cats or dogs as it gets the fur vacuumed up easily. 

Last night ours kept bumping into things as my phone is too old to download the app to schedule and program it. It still did a great job. I am keen to see how much better it does when I update my phone.

We are just staying home this weekend as there's going to be a few days of physios and doctors for Dianne next week. Being oldies, we are bushed! But ya gotta do what ya gotta do! Fibro flare or not!

I am not getting paid for advertising roomba but when you find something that helps with fibromyalgia and other chronic illnesses, you just have to pass it on! 

A nasty dictator

 

Yesterday was a very busy day and I am feeling the after effects now. My fibromyalgia is flaring and the pain is incredible. 

Dianne my daughter was not able to get the staples out from her total knee replacement because the doctors and nurse said a week out of surgery is too early to remove them- especially on a bending joint. We had to reschedule to next Thursday. 

Then I was not allowed to accompany her into physio because I am not vaxxed against covid. So I helped her return her hired crutches-(she has her own) and left. 

I accompanied her teen son into his counselling appointment, talked to the psychologist as he is a new patient, then left them to discuss things. 

It was so much walking and in and out of cars that my own knees were quivering. Di's pain level was off the charts as it is difficult to get in and out of our car- it is high. She begged me to not undergo knee surgery myself. (I have both knees with torn ligaments) She didn't have to beg much. I don't like pain.

Today I am just resting and making a stew in my slow cooker. That's the best I can do today. Fibromyalgia is a wicked task master and a nasty dictator. 

Stating your name and business

As you know, we have just moved and along with a new home, comes some new things to add to the decor.

Chris and I love this door mat. This verse is one of our favourites and when we saw it we wanted it. It can be personalised to add your family name.

It looks lovely at the front door. We still have pictures to be hung and some flat packs of furniture to make up. The unpacking itself is almost finished.

The plan is to gradually go through room to room and gradually declutter. But this will depend on my spoons. I have another fibromyalgia flare.

But we have been finding that even a concerted effort of 5 minutes at a time followed by a rest and a cup of tea has paid off. Pacing is critical with fibromyalgia and heart failure.

I am in the process of getting an i-Roomba robotic vacuum cleaner to help with the floors. This house is quite large and the passage alone is as long as a cricket pitch...

Neither Chris or I can vacuum these days and I am hoping that the i-Roomba will save on money to employ a helper to come clean the house for me. I will let you know how we go.

Happily, the robotic vac can manage both tiles and carpet without skipping a beat, so it will be able to keep our lovely door mat free of dust bunnies. 

Meant to be noticed, I don't want visitors to our home seeing the mat dirty- not when it's proclaiming our faith and intention of having a holy home. It's all about stating your name and business! 

More spoons to enjoy life.

We have just moved and we are both quite tired still. Although the house is functional, there's still a lot of unpacking to do.

This weekend, two of our grandchildren wanted to come see us and give us their verdict of the new house. Knowing that memories are all we will have once they are grown, we agreed to have them.

Although I am suffering from a bad fibromyalgia flare, I got dressed and stayed up in order to spend time with them.

We cooked lunch together and watched family videos of when they were first born and growing up. It was fun but it was also non taxing to my sore body. 

Today I am expecting a lady to come clean for a couple of hours. She did such a good job of cleaning our old house for our bond return, that I asked her if she would like to do a regular clean for us once a fortnight. She agreed.

With my poor daughter suffering from fibromyalgia as well and now living two minutes away, she also agreed to clean her house after ours each fortnight as well.

Both my daughter and I are finding just cooking, cleaning our kitchen, doing washing, grocery shopping, running errands like going to the chemist, planning finances and feeding our pets is enough of a job. We need some extra help.

There's very little help here for chronically ill people who can't do housework. What little we did get has been stopped since a new government has taken over the reins. So we have to pay privately.

I am grateful that I can save enough each fortnight to afford a cleaner's help. It not only keeps my home clean, but gives me more spoons to enjoy life.

 

It was a good day!

It's Monday afternoon here. I have cleaned my kitchen and done a load of washing. My step-son and his wife came and checked out the fifth wheeler we have sold. We can't even get up in it anymore.

She made the bed up again like in the photos and step-son vaccuumed the floor. It is so nice and the buyer is going to be getting a bargain. He plans to use it as a static van to live in on his property. He's been on the phone organising a transport company to get it for him. He's interstate. 

Hopefully, it will be gone by the end of the week and our bank account will look a lot healthier. Next we will be selling the tow vehicle and buying a new car and moving. So that's what I am doing this afternoon: looking at home rentals. 

I am cooking pork BBQ ribs for dinner. Yet with only a few things on my list of things to do, I am incredibly tired..thanks to fibromyalgia.

Yesterday was Mother's Day and Chris brought me a cup of tea this morning and said Happy Mother's Day. I said I aren't your mum and he replied but you mother me!  So cute. I giggled.

Each of my kids rang me so all in all, it was a good day! 

I am glad I have done this!

So I have been busy cooking those meals and freezing them as I mentioned in my last post. It has been quite an effort for me, but I think it's paid off.

I managed to get 30 meals cooked and in the freezer. I ran out of containers and room, so I had to place the food in plastic ziploc bags. No matter, because they will taste the same.

Last night I got a spaghetti bolognaise out, emptied it nicely thawed, onto a plate and nuked it for 3 minutes. It was great! I added shaved parmesan cheese and some salad and it was delicious! 

Yesterday my younger son turned 45 and we went to his place to wish him happy birthday. It's a 2 hour trip each way, so by the time we got home I was too exhausted to cook. So this came in handy. 

I have quite a few dishes to do today and I want to clean my kitchen well, so if I have enough spoons left, I want to cook four meals of chow mein with rice.

Sitting here talking to you, I feel like I am falling asleep and my muscles are aching badly. So I fear maybe another fibromyalgia flare is coming to pay me a visit. Just another reason I am glad I have done this! 

A merry little Christmas

                                                

We are waiting for the real estate to carry out their 6 monthly house inspection for our rental. There won't be any problems. We love our home and have a lady come do some cleaning every two weeks. Just the stuff like vacuuming and mopping that we can't do anymore. 

I have washed all our bedding over the last few days and stored our doonas away because we are now in our summer. Next week I will wash our pillows.

I will be making some sugar cookies to try out my Christmas nativity rolling pin. The cookie cutters came yesterday. I want to get the dough right before I make them up for Christmas gifts. If  our little granddaughter is here before Christmas Day, I will let her help. She loves being in the kitchen and I let her cook or bake. 

Our doctor is going to do a phone consult for us this afternoon. It's mainly for prescriptions but I need some advice on meds for Chris's fluids. His feet are swollen like balloons. (He has heart failure) I could have gotten in to actually see the doctor this afternoon, but Chris won't go, so I settled on the phone consult.

I put our little Christmas tree up and hung a wreath on the door..

Just taking things quietly each day.  With another flare of fibromyalgia, it's enough. Like my 18" tree!  We are going to have a merry "little"  Christmas.

But then again, maybe not!

 

With the start of our summer tomorrow, we have been having some very lovely days this last week and today. I have enjoyed the respite from constant rain and so has my body.

Fibromyalgia has taken a back seat and I am enjoying having some spoons. It's been so long that it is a surreal feeling. 

I have been washing our bedding after the winter months and will be packing away our doonas. We both don't sleep very well and so we prefer minkie blankets. They are light and easy to throw off if we get too warm, yet warm enough to preclude the need for the heavier doonas for a drop in temperature.

It's such a joy to open the windows throughout the house too. We are fresh air freaks. There's nothing like the smell of the early morning. 

I am going to make up my favourite cookie recipe today. And I think I will bake some sultana muffins for Chris. He loves them. 

In stark contrast to flare days, I have already had my shower and gotten dressed. I need to take our bloods and give Chris his insulin injection. I think I will serve him some soldiers for breakfast this morning.

I have pork chops thawing for dinner tonight. I may do an egg salad to go with them. It's salad weather here at the moment.

As I must pace myself so as not to bring on another flare, I think in between tasks I will go out in the back garden and sit on the garden swing. My friends the birds are so tame that they actually come down to eat almost from my hand. It's so relaxing!

I have a lot of things I want to do today, but nothing compares to sitting in the swing in the sun watching the birds. So maybe I will get all those things done, but then again, maybe not! 

Tomorrow may be better

 

So Friday night I developed a raging toothache. By Sunday I was so desperate for relief that I was seriously considering going to the ER at our local hospital.

I only had Panadol or Tylenol here and it wasn't helping at all. Waking up Monday morning, I rang the emergency department in our local dental hospital and they made an appointment for me that afternoon.

My tooth was cracked, exposing the nerve, so it had to be extracted. It was a difficult extraction and my jaw had to be planed down as it had jagged edges after the tooth was removed.

The dentist would not prescribe opiates for pain relief and told me to see my doctor. Fortunately for me, he did a phone consult and left a script for Tramadol for us to pick up. Chris got it dispensed for me and it was a life saver.

With my knees both paining me and a fibromyalgia flare brought on by the extraction, I felt like I was drowning in pain. So yesterday I spent most of the day in bed.

Today, I have a lot of dishes to wash and owing to how I feel, it will be the only job I make myself do.

I will make some Jewish Penicillin for dinner tonight and we will have a salad sandwich for lunch.

Hopefully tomorrow will be better.

Even pleasant times are draining

Yesterday we had Chris's daughter come for his birthday which was Saturday. She brought a cake and a gift- the top fitted perfectly, but the slippers were too tight for his swollen feet.

Tomorrow we will go and exchange them as I have the docket. We were going to Kmart as Chris was given a gift voucher from my daughter, but he is feeling tired today, so we will make it another day. 

Chronic illness dictates our lives now. Chris with his heart failure and me with my fibromyalgia. Spoons are dictators that seek to keep us immobile with no social outlets. 

These days, we are fortunate in that people come to us. Over the years, they have realised that often it is impossible for us to leave our home to visit them- especially if there is a time-table. One just never knows how many spoons will be available on any day-not until the morning at the earliest.

I only have basic house chores today as all the washing and dishes are caught up. So that will be all I have to worry about with no spoons available today.

It's funny how even pleasant times can drain one of spoons...

Above is a picture of Chris and our grandson Lachlan who also shared his birthday with Grandpa. 

Kudos to us all!

kudos

/ˈkjuːdɒs/

Learn to pronounce

noun

1. praise and honour received for an achievement.

   "she was looking for kudos rather than profit"

   Similar:

   prestige

   cachet

   glory

   honour

   status

   standing

   distinction

   prestigiousness

   fame

   celebrity

   reputation

   repute

   renown

   notability

   admiration

   respect

   esteem

   acclaim

   acclamation

   applause

   praise

   credit

   approbation

   tribute

   Opposite:

   obscurity

   infamy

   • INFORMAL•NORTH AMERICAN

     compliments or congratulations.

     plural noun: kudos

     "kudos to everyone who put the event together"
   • 
     

   Anyone who manages a home whilst battling chronic pain, illness and disability will know that there is a sacrificial element: we are the most selfless and courageous of women. We Sacrificial HomeKeepers sacrifice our comfort and exert ourselves beyond limit for those we love.

   
   

   As a chronically ill woman, I can identify with women who are sacrificing themselves in trying to maintain normality in their home and family. I believe I am well qualified to write about chronic illness as I suffer from a myriad of health problems ranging from life-threatening to simply annoying.
   
   These posts are written as a diary of thoughts and articles through my days as a sufferer of chronic pain and illness. If you share that journey, please feel free to read this and perhaps comment, for illness can be a very lonely and isolating experience

I know that many of us would cling to our beds or couch and wouldn't do a thing if we weren't so loving. I know that a lot of us work in our dressing gown, such is our devotion. 

We are just amazing and I love every one of you Sacrificial Home Keepers for it. Kudos to us all!