Part of your tribe

Sadly, I walk the lonely path of mental illness and chronic illness and it can be a lonely path.

However, I have been blessed with a caring and gentle husband who stays beside me and who has my back. It is such a comfort to know that his love isn't conditional on how fast I spin my wheel.

If you have someone like that in your life, consider yourself blessed. In this cold and crazy old world, it's hard to find a good heart.

Thank God for people who support us in our illness or disability- they truly are God given. Cherish them. They are kindred spirits and part of your tribe...

Catching up and Staying put.

 

You may recall our rented home was up for sale. Well, it finally got settled last Thursday and we are allowed to stay on as tenants.

This was so good as we have now acquired another cat to join Xena and Milo. He started out as a skinny manky stray but his quiet ways and lovely face won our heart. And being a cat lover, I fed and befriended him.

Eventually he invited himself inside and captured Chris's heart as well. We didn't know what gender he was, so we named him Ginger. We thought he was a feral cat but I looked into our local FB groups and lo and behold, in the lost pets section, who should be staring at me on the page than our little Ginger.

So I messaged the owner and she confirmed it was him. He has blossomed and she loved the video we posted of him. She said he looked happy and told us he was an almost 3 years old neutered male, was called Joey and had run away when moving house last January. 

She also told us that as circumstances had changed she could no longer keep him, so we could keep him! We did! He has the sweetest nature ever! 

I have finally weaned off the Prednisolone. I have gained weight while I have been on it, but the pain relief it gave almost made it worth it. I still have polymyalgia rheumatica and also fibromyalgia, which isn't helped by Prednisolone. It seems that pain will always find me.

My lymphodema is still bad with my right arm swelling a lot. My sugars are coming down too since I started on insulin injections.

On the bright side, we have a great-grandson due any minute, a great-granddaughter due in July and another great-granddaughter due in October. I have already given each mother a crocheted shawl and a knitted jacket and am glad that I managed to finish them all before the latest health challenge.

We had a small baby shower for the girls and I am so glad it was done before these last few challenging months. I made a gender neutral hamper for the baby due in October as it was too early to know the gender. It was a happy day.. 

Apart from crocheting these bibs for each baby, the girls's gifts are done... and so we are caught up and staying put! 

 

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.

We aren't lucky but blessed!

 

So you may recall our rented house was up for sale. Well I am pleased to report that it has been sold to an investor who is willing for us to stay here longterm. We are overjoyed! The settlement is today.

Also a longing of mine was to be a cat lady in my old age, and now we have 3 cats! A gorgeous little ginger cat has won our hearts and home. We are not entirely sure of its gender but it doesnt really matter.

It was very hungry and manky looking when it came around eating the scraps we put out for the birds. So we fed it proper cat food and it hungrily woofed it down.

Gradually it lingered and wanted petting so eventually it ended up inside. At the moment both Xena and Milo aren't too thrilled, but they will get used to it.

Ginger is the name we have given it and it is a very affectionate young cat. It has literally bloomed with the cat grooming itself now that it is now longer hungry and in survival mode. It purrs continuously.

When we are better acquainted, I will check a bit harder to determine its gender, but I don't want to frighten it off at the moment.

We finally have repaired our letter box. You may recall it was damaged by the Woolworths delivery driver and we heard nothing back from them or the transport company who employ their drivers.

With the settlement of this house pending, we decided to purchase and install a  new letter box. And just in time for the final inspection before settlement, it was replaced... 

We both realise how much the LORD has blessed us, and we are grateful. We aren't lucky, but blessed! 

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

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..

I feel sick at the thought

 

So a couple of days ago, we had a visit from a real estate man with the news that the owner of our rented home is selling.

We have been here for 16 months. Our bodies are still feeling the effects of the move. So receiving the news made me feel physically sick.

Chris has recently had a stroke and is recovering slowly from it and I have grossly swollen legs and right arm from lymphedema.  We need this move like a hole in the head.

It was strange that I had just said to Chris that morning that I feel like this is the nicest home I have lived in and that I have emotionally unpacked my suitcase... then this.

I have been praying that the home is sold to an investor so that we can stay here. But I can't see them refusing a sale if it's not.

Then of course, maybe the LORD has something planned in moving that we don't know about yet. So I have prayed in the sense of  "not my will, but Yours be done!" 

I am currently having the heat of lymphodema, polymyalgia rheumatica, angina and back pain, all marinaded in a fibromyalgia flare that has me wanting to stay in bed a lot.

Also, the worst of this is that we are in limbo... we might stay. or we might go. 

I can hardly type the word go... because truthfully, I feel sick at the thought.

Grateful for slowing down

 

It is funny how ill health has slowed me down. With fibromyalgia, spinal problems, physical limitations including heart failure, it feels at times like I can't even raise my head.

Through necessity, I have had to slow my pace in regards to homemaking and I have had to put perfectionism to bed. It is either put it to bed or be forced to go there myself.

By being forced to slow down, I have been able to appreciate my quiet routines and peaceful home. If I had never been so ill, I would probably have remained stressed with high blood pressure.

I can now say truly, I am grateful for slowing down. 

Stockpiling is not from fear

 

This is another post on the way of caring for your home and family in lean or hard times.

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

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

Putting insomnia to good use!

Fibromyalgia, angina, spinal problems, muscle pain and neuropathy often vie for first place in keeping me awake at night.

It often starts with a trip to the bathroom and ends with insomnia raising its ugly head. You know the noises of bird calls in the night, a train tooting in the distance or the barking of a dog, you hear them all and they are the loneliest sounds...

I have found a way of replacing that lonely feeling with making my mind bring to remembrance prayer requests and anxieties of the past and coming new day. 

Laying in bed, I meditate on the LORD and force my body to lay in a restful position as I often eventually fall asleep mid prayer.

Where once I would stress out because I thought it rude to zone out on God, but I now have come to see that He blesses us with sleep and is therefore pleased when I succumb to my tiredness.

What can be a lonely time can be redeemed by praying blanket prayers. It's comforting to know that we can put insomnia to good use!