When the spoons are gone forever

 

The Australian government allocates $53,000 pa in a care plan to try to keep aging people in  their own home if possible. It works out cheaper than putting them into a nursing home. I am so grateful to live here where there's help because aging is no fun!

A lot of oldies here have to sell their home to get into a nursing home and/or have their aged pensions garnished. Chris and I have absolutely no assets to garnish and the Aged Care Package here is means tested.  

We rely on the Aged pension and that is all we have... so we qualified. 

We have worked hard in our lifetime, managed our homes, worked outside the home, brought up our children and possibly, even grandchildren. Now we find either that our spouse has passed away or is also suffering the effects of old age and cannot help us either.

There's no shame in asking for help. Even Sacrificial Home Keepers eventually run out of spoons which  are then gone forever.

A personal battle

Those of us who suffer from chronic pain and illness probably will find that taking a shower is not only an exhausting experience, but a scary one as well.

With spoons scarce and a fear of injuring oneself in a fall or having a heart attack or breathing difficulties whilst under it, we can put taking a shower off for quite some time. Especially as well, during a flare up of fibromyalgia..

With this in mind, I did some reading up about this personal battle and I came across a really informative blog by a hospice nurse. She has some really helpful information which I intend to try...

I have been doing washes at the vanity sink and I have been helping Chris with his bathing as well. We also brush our hair and teeth and change our clothes each day. So we never get to the point where we smell. But it is still important to wash our bodies and hair.

In the past I have bought these bath sponges that require no soap and just a little water. Or none. I have tried these ones called Scrubzz  I found that they fluffed up after adding water so I am trying the foam by Scrubzz

I do have trouble washing my hair due to mobility issues with fibromyalgia and polymyalgia rheumatica. It is simply too painful for me to raise my arms. 

Today I learned of a new Scrubzz Shampoo Caps. Shampoo with water in a cap that does not need a rinse or leak and can be used even in bed.

I am sharing this with you so that you don't feel alone if you also suffer fear of showering. If it helps you it will be worth the embarrassment of sharing this very personal battle.

Back to basics

As you probably know, life has been really hard for me both physically and emotionally. Chronic illness is never fun.

But life must go on and that life for me is as a wife, and home maker. So it is normal that I would sit and ponder on how I can best use my few spoons or energy and continue to care for us both as well as our pets and home.

I have had to prioritise our basic needs in order to keep our home clean and our bodies clean and fed.

For me I need to daily organise our meals and medications and feed our cats and birds. 

In order to do that, I need to menu plan and then shop online for supplies.

I also need to do a load of washing each day. With polymyalgia rheumatica and fibromyalgia still hurting, I use the dryer.

To keep a roof over our head and utilities and food coming, I have to organise our budget and pay the bills.

I need to organise our medications into pill organisers and get any repeat prescriptions dispensed.

If this necessitates a doctors appointment, I have to make a booking for a phone consult. Every second day we shower and help each other..

With my Aged Care Home Package, I have a cleaner come for 2 hours a week and she does what I simply cannot manage anymore. She changes our beds, cleans the kitchen benches and stovetop, dusts and cleans our showers, toilets and floors.

The day before she cleans, I change the tablecloth, clean out the kitty tray and wheel the bins out for collection. The cleaner brings them in for us.

Every morning I run the Roomba to pick up crumbs and cat's fur. Then with my spoons almost gone, I lay on the couch and Chris rubs my feet to get the lymph fluid off my ankles. And I sleep.

I refuse to feel guilty for needing to sleep or for keeping my swollen legs and feet elevated. I am doing the best that I can.  I am not lazy, just a worn out old Sacrificial Home Keeper trying to get back to basics.

All things considered

 

These last few weeks have been horrid. My fatigue and pain levels were so high that I had to have Prednisolone to bring down the inflammation from my Polymyalgia Rheumatica and fibromyalgia.

I have been so fatigued that I  have to have a nana nap after breakfast. Without it I can't even function. So I have had to just do the basics to keep our home clean and keep us watered and fed.

My doctor retested me for Lupus and glandular fever even though it came back negative she discovered that I now have stage 3 kidney failure.

She is going to send me to a nephrologist after I have a KUB scan.

I am able to sit here on the computer for the first time in weeks but I have very little spoons still. With my kidneys failing it is not likely to improve much in the near future.

We have to keep a lookout on my kidneys, blood pressure and diabetes. To that end, I have started a new diabetic medication, Jardiance which is more kidney/heart friendly.

Today I have started to slowly wean off the Prednisolone which not only will help my sugars but my weight. It has been a struggle to keep from adding more pounds due to hunger from the steroids.

My pain tonight is not too severe considering I am decreasing the steroids and this is a good start, all things considered...

PS the Jardiance had to be discontinued. It caused me to develop a severe Urinary Tract Infection.

                                   

Spring cleaning: one spoon at a time!

 

My blogging friend, Paula Short has written a wonderful post that may help other Sacrificial Home Keepers...

Spring Cleaning Small Spaces: A Gentle Guide for Those Navigating Chronic Illness or Aging

The warmth of spring is in the air, bringing with it a sense of renewal and often, the deep-seated desire to “spring clean.” But for those of us living in smaller spaces, especially when managing a chronic illness or navigating the realities of aging, this annual tradition can feel like an impossible mountain to climb. 

The good news is that with a bit of strategy, a change in perspective, and a whole lot of self-compassion, you can achieve a refreshing, revitalized home – one baby step at a time.

This post is for you – the warrior managing fatigue, the grandparent wanting to clear clutter for safety, and anyone who feels the “itch” to renew their space but needs a realistic approach. Let’s find a way to breathe fresh air into your home, together.   Read her article here...

Spoons and grace and a lighter load.  

Especially during this rough ride..

 

It has been a rough ride over the last few weeks. Medical matters. Living matters. Family matters.

All the stuff that makes up our life at the moment has graced us with both good and bad events.

Firstly, our new doctor has taken my lymphedema seriously and ordered antibiotics for the bad infection that has overtaken my legs. Ignored by doctors until last week. I have had this infection for 5 years! We are so glad we have at last found a decent doctor..

So three days running, we have had to leave home and see doctors and have blood tests. Not a big deal, most people would think. But with struggles to get enough spoons to shower and get dressed, then to actually get there, it is indeed a big deal...

My kidneys are failing with diabetes.. 56. My infection in the legs is sky high. I have been given Clindamycin. I was also given statins which I tried and the muscle pain escalated 100%. I am not taking them. My fibromyalgia muscle pain is more than enough pain! 

The day after the doctor visits, Chris saw the opthalmologist for a review on his sixth cranial nerve palsy. He is no longer seeing double and has been cleared to drive again. We are praising the LORD that Chris's stroke was not too disabling. We both know it could have been much worse! 

And so, this weekend I have been bed ridden. Breathing is enough with the fibro flare and I have had trouble keeping awake. So I slept. and tried not to dwell on possibly having to move out from here..

I am actually posting this at 2am. My circadian rhythm is all out of whack. But I will be needing to try to sleep again in a minute or I will be no good for tomorrow...

Anyway, I just wanted to let you all know that God has answered our prayers with Chris's eyes. Just another chapter of our life when we can see that His Hand has always been on us. Especially during this rough ride..

Caring for your household

 

So as you know, I believe in being prepared for food shortages and other distribution problems. 

I have been buying extras of staples when they are on special and my pantry is shaping up really well.

Likewise, I have been refurbishing my first aid supplies and updating our medications. I also have bought home cleaning supplies when on special and extra cat food for Xena and Milo.

I checked up on what foods were rationed here in Australia during WW2 and I have used that as a base guide for buying foods... plus I am adding foods that I know we particularly enjoy.

Also, I have purchased some extra diabetic supplies and monitoring machines to ensure we have the means to keep our diabetes under control.

In case of power outages we have purchased a generator and we still have our camp stoves with gas cylinders for cooking. We have an aluminium kettle and saucepans in case we need to use our camping stuff. I have bought different strength batteries when they were half price too.

This may seem all time consuming and energy intensive, but with no spoons due to ongoing fibromyalgia, I can tell you that it isn't. It just takes some planning and then buying a few extra things on your list each week.

Not wanting to keep our storage foodstuffs in the pantry with our usual edibles, I cleared off some shelves in my linen press and these have made a wonderful storage larder. Likewise my fridge/freezer in the garage is just loaded with storage edibles.

I know that hard times will come. Jesus has warned us in the Word. So it really makes sense to gather and store food in these times of plenty for when the times are lean.

There is no fear, just a quiet confidence that you can laugh at the times to come because you and your household are well cared for.

Strength and honour are her clothing; and she shall rejoice in time to come. Proverbs 31:25

Better than running from bombs!

 

Well, my fibromyalgia flare has abated, and I have been doing a lot of knitting as watching TV bores me to tears.  

I have been a bit depressed lately and I think it's because I have been watching too much news on world events. So I decided to turn it off and bring my attention to something positive.

I often listen to the Bible on YouTube read by David Suchet. It tends to put my mind at rest and gives me pleasure.

Most mornings I do breakfast and medications and go on the computer to check emails, answer any comments in my blogs and check out groceries specials and organise our medications and get the scripts that are due, refilled.  Then I tidy my home.

I have a lot of joy in watching the birds that come into our back garden and one of my morning chores is to feed them after I have fed Xena our little white cat... and now Milo, separately of course lol

As I am often low on spoons, I need to pace myself in the afternoon and often take a nana nap in order to be able to cook dinner.

We don't leave the house much at all, and to be honest I prefer it that way. But with my motorised scooter coming soon, I may find I quite like shopping again....

Life is pretty simple- almost boring, but with all that's happening in parts of the world, I am glad for the boring life. I don't think I would cope very well running for my life away from bombs!

Acceptance brings peace and patience

 

Over the past 30 years that I have been chronically ill, I find my tolerance for drama and fighting is almost zero.

It's not that I don't like people, it's just that the more you are surrounded by them, the more involved you become in their problems and their dramas unfolding. These days, I prefer solitude and sharing my life with Chris and our cats.. as for people's dramas etc, I pray for them.

These days, I am so grateful for our home which is a haven to Chris and I.  On the days that I don't have to leave my home, you will find me enjoying the peace of homelife. Our cats, Milo and Xena give us  not only joy, but peace. I love their purring near me. It's particularly soothing.

Throughout the day you will find worship music playing low accompanied by the noise of the kettle as it boils the water for a cup of tea. It's going almost constantly.

Because of lympedema and peripheral neuropathy in my feet, coupled with severe fibromyalgia, Chris will often massage the fluid from my legs and rub my feet which feel like they are burning. He has done this for years and it is so soothing that I will usually be asleep within minutes.

Chronic fatigue coupled with aging has given me extreme sleepiness and I seem to be unable to function properly without a daily nana nap.  I no longer whip myself with false guilt, but have accepted that this is out of my control. It is what it is.

Part of living a peaceful life when chronically ill is to accept that some things will have to go to the wayside, but I try and do as much as spoons allow.

Along with quiet enjoyment of your home, and acceptance comes peace and patience with oneself.. 

When your bed is calling your name.

Over the decades that I have lived with chronic illness, especially heart problems and fibromyalgia, I have found that having a routine helps me keep focussed and feel in control of my home.

I am not saying that I don't ever have days where I cannot rise to the occasion and follow them, but on the days that I have a small amount of spoons and motivation, knowing my priorities helps me know where to start in the overwhelm...

My priorities on days when I have enough energy to make an effort in doing housework, are cooking, dishes and washing. Everything else can wait.

So instead of being a slave to my routines and house, I allow myself to let a lot slide on bad days. I refuse to feel guilty for something I have no control over.

Instead of hating my routines, I have come to welcome them for they give me peace and direction, especially during a fibromyalgia flare with brain fog.

I have learned a lot in the three decades I have been a fibromyalgia sufferer, and I can honestly say that sticking to the basic routines will help you cope with it all. 

If I (however loosely), can follow the basic routines on a bad day, at least we will have been fed and have clean sheets to slip into when fatigue kicks in and our bed is calling our name.

Housework is spiritual

 

As a Clean Freak and author of the e-book secret confessions of a clean freak - I can tell you - it's the results of housecleaning that are spiritual.  A clean home feels better.  Plus, you have the pride in a job well done. It's all positive - calming.

Housework left undone is very negative. A constant reminder of things you haven't done. I feel good when my bathroom walls or my stove is shiny. It makes me feel like I have control. And sometimes, that's all I have control over.

And, like all things spiritual, it takes discipline until it becomes habit. Housecleaning is a breeze once you have it under control and you have a routine. Really! I'm a single mom and I get picked on all the time for being too clean - like I have some disease! Guess I'm just a freak! author unknown.

Well, I wouldn't call this author a freak. I know from my own experience that a messy house makes me feel worse than usual and irritable. The trouble for me with never ending fibromyalgia, is getting the energy to do it. But the results of housework certainly are spiritual!

I have known a Christian woman who was part of our home bible group many years ago. Her place looked like a hurricane had struck it. Ants marched along the floor to dine and pillage her overflowing trash container in the kitchen. There wasn't a clean cup or spoon for after the study's fellowship cuppa.

We all cleaned it up so that the ladies who came would be more comfortable, but by the next week it was just the same. Instinctively, we knew that housework is spiritual and that we would not be able to focus on the Word sitting in filth. Filth is not conducive to worshiping God.

These days I am limited in how much I can clean and it often is a source of dismay to me that I can't do as much as I would like. When I do have the spoons (energy) to clean, the results lift my spirits so much that I have to conclude that housework is spiritual. Blessings as you sacrificially set the spiritual tone in cleaning your home.

 

Perhaps I am

 

So over the Christmas/New Year break, I have had a few disappointments. Once again fibromyalgia flares, lymphoedema and angina have plagued me when I particularly wanted to be well, and they've ruined my joy in life.

This year we weren't even invited anywhere for Christmas Day or New Year. When I asked about it, my children responded with "well you never come anyway!" It hurt because it's true, but I smiled and said "that's OK!" But it would have been nice to have been invited anyway.

Chris's children came to visit us a few days before Christmas and I was nearly demented with pain and fatigue, but I kept smiling and tried to be cheerful. I don't think they realised how much pain killers and determination went behind that smile.

I know some people think I am a malingerer because I don't look sick most of the time. And I think they believe that I am putting it on when I say how painful my life is- they have no idea the effort it takes to appear well. 

Not allowing illness to define me, I try very hard to overcome my pain, tiredness, depression and lethargy. Often it is overwhelming and I succumb to the feelings of loneliness and inferiority that drown me. 

But no one really knows that depth of suffering, and I do believe no one cares. So I will discipline myself and take control of what few spoons I have, for not many know how heavy the cloak of illness gets.

So when I occasionally do succumb to it, and mention it to others, I can see them looking doubtfully at me and judging me as a malingerer. They think I am acting and putting it on.

I do act a lot, really. Strong when I am weak. Energetic and able when I am clearly not. Smiling in spite of it all. Bearing my load stoically.

If they did know the depth of my pain they would know that I do act- I act out feeling normal. An actor who could win an Oscar to avoid being labelled as a fake. 

A good actor can bring to life a fictitious person and for me, that person is myself enjoying good health.

They say I am an actor- perhaps I am...

They weren't forthcoming!

 

So Christmas has come and gone and I am totally down and out with a severe fibromyalgia flare.

Our festivities weren't grand and we stayed home. We had family come on Sunday and then on Tuesday and it was fun but exhausting.

Come Christmas Day, we just stayed home by ourselves. I was so fatigued and in pain that we decided that leftover ham sandwiches were good enough for lunch and dinner.

By 9 o'clock Christmas Night I was in bed and stayed there all Boxing Day. I was so tired and stiff in the muscles that I could barely move. Painkillers didn't help at all...

Saturday saw me cook dinner and lay on the couch and that was all I could manage.

Lucky that I don't believe in Santa any more or else I would be sorely disappointed... all I wanted was some spoons for Christmas... and they weren't forthcoming.

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

A wonderful place

 

As I get older, I have grown to appreciate my home so much. I have strived to make it an oasis of calm when the world is anything but.

There is much enjoyment in just staying home and relaxing when needed and eating some comfort food and making tea as desired.

It has taken me years to streamline my home making to accommodate my need for pacing due to my many illnesses, especially fibromyalgia.

I have needed to curtail my perfectionism for illness has put an end to that. And with that, peace has come.

To be able to stay at home and just do what is strictly necessary on a spoonless day is very freeing, as is slipping in to bed when I need it.

Knowing I have no need to face a busy world unless I want to is comforting as well. Sometimes leaving home is a struggle. By the time I have showered and dressed, I am totally exhausted.

By accepting myself, which includes my ailments, I have put to bed false guilt and have come to a place of peace. 

Along with my home, it is a wonderful place to be in...

A boring home life

It's Saturday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a  load of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's a boring day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a boring home life! 

Bells and whistles

 

I was deep in thought on my computer this morning when something started beeping in the house.

Chris called out to me asking what went off. I did a mental check going through the chores I was currently doing. Or I should say, that my appliances were doing for me.

My washing machine was still washing. I wasn't using my oven. My robotic vacuums were fully charged waiting to be instructed on when to start cleaning. My dryer was not in use. The air fryer was not in use....

I asked Chris if he had left the fridge door open... he hadn't. There was only one thing it could be: the dishwasher. It was! 

It was such a relief to locate the beeping sound. Doubly a relief that the dishes were washed. Now we could find a clean cup to have a cup of tea.

I have had many painful conditions attack my body at once- fibromyalgia, PMR, TMJ and knees that keep wobbling out of place and my lymphoedema is so active that I can't wear my usual slippers. My feet and legs are too swollen.

Along with these painful conditions has come the need to sleep around the clock. So I have been remiss in keeping the dishes washed and ready and although I have been washing our clothes, we have been living out of the laundry basket. 

I know that's not ideal, but chronic illness and consequent no spoons has dictated my pace. When one has constant chronic pain, one's attention span is short and the beeping helps bring my attention back to the task at hand. As always, I needed a clean cup to make my tea this morning.

But I digress- back to beeping- I am glad my applicances bring me back into focus and come with bells and whistles..

I think it was well worth it

 

As you know, I love watching the birds that come in to our back yard. Naturally, they fly off as soon as they notice us sitting watching them.

We don't have a vertical blind which would make it private enough to watch them without them seeing us. So I had to come up with something that wouldn't damage the house but does the trick.

Anyway, first we tried cling window dressing that was mirrored from the outside, but clear inside. It should have worked but was not very good quality and my granddaughter gave up.

When I was looking for something clingy for the window, I came across these decals. So I got some.

Putting them on was difficult for me... Chris has vertigo and couldn't help me and I didn't want to ask my granddaughter to come all the way up here to put it up again.

Anyway, it works a treat. The birds come and go and give us much enjoyment.

It was very difficult for me to apply, especially the bottom decals... my spoons evaporated quickly and my muscles complained loudly.

The next morning, I woke up with the mother of all fibromyalgia flares. My back hurt, my bottom muscles screamed, my neck and shoulders ached abominably, and my arms and wrists felt like they were tearing and my knees were hot to the touch and refused to bend..

Because of my lymphoedema, my legs were propped up on pillows while I slept. I took some Panadol Osteo to help with the pain and only cooked a light dinner. 

I can now sit at my dining table and watch the birds which relaxes me so much. 

Notwithstanding that I had a fibro flare over putting the decals up, I think it was well worth it.

Quietly dwelling

  

Next month I will be 72. All things pertaining to ageing are at an all time peak. Everything that can ache, does.

Every day I need a nana nap to get through to dinner time and really there's nothing I can do to change that. I am forced to go with the flow.

I used to buy Lite N Easy food as part of my Aged Care package, but Chris and I have become sick of it. I have no choice but to cook.

As dinner times are when my spoons are usually spent, I sit down at the kitchen table and prepare whatever I can beforehand. Then it's just a matter of cooking some meat and doing some gravy.

Both ageing and fibromyalgia keep me living in pain, but I try to not complain about it too much.

I know at this season of my life that I can take that nana nap when I need to or leave the clothes to be folded another day. Likewise I can go to bed as early as I want... there are no schedules to keep.

Each day brings its challenges but even so, I am glad to be here...life is still sweet!

Even in this quiet season of my life it is very comforting to know that I am just where God wants me to be-quietly dwelling in the simplicity of acceptance and peace.

 

I won't succumb to it...

 

I am currently unwell. My spoons have evaporated and everything that can ache or pain me, is. I am in a fibromyalgia flare.

We Aussies are in to our autumn or fall but the weather has been erratic with many days over 30C or 86F. With lots of rain to make it humid and steamy. It's bad weather for a Fibromite.

We have air conditioning but I have missed being able to go out into our back garden. So with temperatures forecast to be in the high 20's, I find I will be able to do that later on today.

I have managed to do some basic household chores. Our beds are made. I have tidied the kitchen and done a load of washing. 

There's a tray of sirloin steak out on the benchtop thawing. Later on in the afternoon I will peel some potatoes to mash and some pumpkin to go with it.

The birds are calling me. I am going to change the washing over and put it in the dryer then rest. Every Fibromite knows if you don't rest on bad days, a flare will last longer. 

After the next few chores, I am planning to go outside and read...and I won't succumb to false guilt.