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...

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.

                                   

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

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! 

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. 

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! 

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.

 

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.

Dwelling in acceptance and peace

 

So over and over again lately, I have had to have a nana nap in the afternoon. I simply can't stay awake all day.

In the past, I have tried to push through the daze and thick fog of sleep deprivation, only to find the fibromyalgia flare, angina pain, neuropathy and endless pills to keep me functioning put an end to it.

After 25 years of fibromyalgia and other chronic illnesses, I have decided that the spoons win. I have given in to their control. I now plan an hour or two hours sleep in the day.

After the daytime sleep, I find I can function enough to cook dinner and feed the cats.

I think being nearly 73 years old doesn't help either. I talk to my friends who suffer no chronic illness but are the same age as me, and they are finding a nana nap is indispensible. 

Another strange thing I have noticed is that I seem to have a better quality of sleep in the daytime. As a result there is more restorative benefit from giving in to the fatigue.

I have decided to once and for all accept that my body needs extra sleep and learn to live with it.

By taking a nana nap, I find that the spoons don't win entirely. Sleep truly is a gift from God...

Psalm 4:8 In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety.

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.