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.

                                   

Pass the onions

So as you know, I am currently on Prednisolone for my polymyalgia rheumatica. Predictably, my blood sugars have skyrocketed because of the steroids.

As I was reading my FB, a reel came up about bringing blood sugar down by eating onions. So I prepared this drink and it was too vile for me to take.

As I had boiled a lot of onions, I added some seasonings and drained them and ate them

Fastforward to evening when I take my sugars and inject my insulin, I firstly noticed that my finger sprayed blood in a fine spotted spray. I thought how thin my blood must be.

Secondly, when I took my sugars, to my surprise they were in single figures after double all day...

So I have made a decision to eat more onions to reduce my sugar readings and keep my blood thin...

I will be using insulin of course, but if my sugars spike especially after taking Prednisolone, I will be asking Chris to pass the onions...

Thank You Lord, for the blessings.

 

So we found out today that  the house has been sold  to an investor.

Apparently we will be able to stay as tenants. To say we are relieved is an understatement.

We are so grateful to the LORD for allowing us to stay. He has answered our prayers.

We are both not in good shape to cope with a move. Chris with his stroke and me with fibromyalgia and polymyalgia rheumatica flaring together..

At the moment, I am still not quite believing this good news... after weeks of uncertainty, it is such a change to relax.

I am so attached to this house.. I have finally unpacked my emotional suitcase so to speak. That rarely happens when you are constantly renting.

Just savouring a cup of tea with my cat by my side, I realise how very very blessed we are.

We would have somehow managed a move- you do what you have to do- but to be able to stay and not have to do anything except pay the rent to a different landlord is a blessing that will go on giving.

Thank You LORD, for the blessings.

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.  

I am comforted!

 

I am on fire with pain. Literally from the top of my head to the tips of my toes. I don't believe I am being punished for my sin. Jesus took that for me...

But I do believe that we live in a fallen world and I am genetically weak with many inherited maladies from both sides of my parentage.

At nearly 73, I am unravelling. It is just the facts.. my body is failing me. I am in agony and I cannot get medications that will successfully keep the pain at bearable limits. This is because some who abuse opioids have closed the door on help for everyone who truly needs it.

They don't believe that I need pain relief, but here is a brief description of my pain in mostly every area of my body.

My head: PMR temple pain and headache. TMJ causing jaw pain and earache. Fibro brain fog.

My neck: Polymyalgia rheumatica pain (PMR) Hashimoto's disease.

My skin: psoriasis and rash on shins from lymphedema of left leg 

My shoulders: fibromyalgia and PMR muscle pain. Lymphedema in my right arm (from the angiogram)

My heart: angina, costrocondritis. Hole in the heart. Ongoing IHD

My blood: antiphospholilipid syndrome. (Sticky blood)

My lungs: pulmonary hypertension. Only my left one working.

My stomach: gastroparisis, GERD. Navel hernia repair done with mesh which is tearing away from flesh

My pancreas: failing due to diabetes 2

My kidneys: failing and dropping at Stage 3- recently 56 today 45. Makers of 50+ kidney stones

My arms: muscle pain with tearing ligament pain. 

My hands: deformed from osteoarthritis. Trigger finger on left pointer finger.

My back & hips: PMR, fibromyalgia, spinal canal stenosis, ankylosing spondylitis, Scheurrmanns disease. No lower discs left. Coccydynia 

My knees: lymphedema, ligaments torn and a fabella in the right knee. Arthritis.

My legs: fluid from heart disease and lymphedema.

My feet: arthritis, peripheral neuropathy from diabetes, heel spurs

Each day brings more pain. The level fluctuates, but it never goes. And I am still treated like a drug abuser when I ask for pain relief- and this is all verifiable by medical tests.

In fact, the only "help" I have gotten is through a pain management clinic where I was told to play Candy Crush to keep my mind off it. It is a joke. 

In spite of all this, I have had comfort from the LORD. He has helped me to seek truth and set the evil one to flight in moments of doubt. It is easy to wonder if one is being punished during a trial of pain and illness.

Sometimes I haven't even been able to formulate prayers and yet He has calmed my heart and made His Presence felt in giving me a peace.

He has led me to rest in Him, allowing me to drift into a sleep that has seen me restored and refreshed enough to cope during even the most painful of episodes.

His Holy Spirit has reminded me that this too will pass and that Jesus is preparing for me a place of eternal joy and health. And that the suffering I have now will fade in the beauty of His Presence and Holiness where nothing will cause tears and pain and where there is no death.

I have truly felt His Love for me wrap itself around me like a cloak of protection and ownership. 

Sometimes He will bring a song of praise or worship to mind, and I will praise Him in spite of it all. For He is worthy.

Through illness and pain, I have felt a Father's concern and love and I have held on to His Promise that He will not leave me comfortless and will come to me..

The pain is relentless, but so is God's Love and Presence. 

It is true: I am not alone. I am comforted.

© Glenys Robyn Hicks

 I will not leave you comfortless: I will come to you. John 14:18

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands... PMR has been confirmed.

She said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't have much choice...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later and I discussed what was worrying me about taking Prednisolone. We discussed the risks and she asked me to try it till Monday when we both go to see her. My ESR was very high (65) so she is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for a piece of comforting cake.

I am the victim!

I need pain relief. My doctor's unavailable  so I had a phone consult with another doctor. I told her my pain is currently off the charts with fibromyalgia, polymyalgia and both knees paining me badly. I asked for a prescription for Tramadol but she said for me to wait until he comes back!

Too long to wait when you are blown away with pain. So I am going to take some Prednisolone for a few days. I have some in the house.

Sometimes you have to go against the medicos and do whatever gives you relief.. (as in taking Prednisolone for some relief) People who are chronically ill and in pain have been known to commit suicide... I can understand why- not that I am going to... just sayin'

How is it that people with genuine pain issues who rarely ask for help, are regarded with suspicion and treated like a druggo? it's not fair... 

We are judged so harshly because of those who rort the system and abuse the drugs.. God knows, we aren't druggos.

Yet here I am, suffering indifference and suspicion because of those who abuse drugs. I only ask for help when I can't stand the pain any longer, and when I do I find less compassionate treatment than those who do abuse them.

I carry a constant burden of pain because others refuse stop abusing the drugs I need during times of uncontrolled pain.. In this, I am the victim!

Like a hole in the head

 

So yesterday my online grocery shop came. We heard the truck back up, the delivery man dropped off our shopping and I proceeded to put it away and check it off. 

I decided to check if I had any mail, and what greeted me was a very nasty surprise. The delivery guy had damaged our letterbox.

Currently the logistics contractor has a damage report from the supermarket and we are waiting a reply.

I had to get in touch with our property manager who told me we would have to pay for repairs. I think not. So I am waiting for an answer from the logistic people and if they won't play ball, I guess we may  have to take some legal action.

You will notice at the side of the letterbox a For Sale sign. This has come at a bad time. However, there isn't really a good time for incidents like this.

With everything else that's happening in our life and the worst fibromyalgia flare happening, we needed this like a hole in the head! 

It's an honour!

 

'Every house needs a keeper. Someone has to do that little work to keep things clean and pleasant.

Someone has to do the shopping, plan the meals, do the laundry, make the beds, and keep things nice.

It is such an honor and privilege to be the keeper of the house.'

~From The Legacy Of Home by Mrs. Sharon White