So true

 

Chronic illness is like being trapped inside a house that’s falling apart while everyone else only sees the front porch.

They see the lights on and assume everything inside must be fine.

They don’t hear the pipes rattling in the walls.

They don’t notice the cracks spreading across the foundation.

They don’t know which stairs you’re avoiding because they might not hold your weight today.

You become an expert in damage control.

You learn which rooms you can use and which ones are off limits.

You learn that fixing one leak might mean ignoring another.

You learn how to smile in the doorway while hiding the collapse happening behind it.

Some days you patch the holes well enough that nobody notices…

Because they can’t see the beams splintering beneath your feet.

Living with chronic illness is maintenance without an end date.

Repairs without recovery.

Survival work that starts the moment you wake up and follows you long after everyone else has gone to sleep.

You don’t get to step outside of it.

You don’t get to move away from it.

You don’t get to hand the keys to someone else and ask them to take over for a while.

You simply learn how to live among the ruins and call it home by Makenzie Taylor 

Something I hope and pray for.

 

Another issue to afflict me. An exacerbation of my lymphedema  I have been in hospital to treat my cellulitis in the legs. I was on IV antibiotics but after 24 hours they sent me home.

I am now on oral antibiotics which are very rugged on my stomach. But I need to persevere.

As Chris is unwell, I told him to stay at home. There wasn't really a lot he could do for me and thanks to mobile phones, I was able to keep in touch with him.

My doctor has told me to try to keep my legs elevated to try to encourage the swelling to recede, but she has also said that lymphedema usually is a life long problem.

My aged care personal assistant/cleaner can't come to the house if I am not there so I came home to a mess. Chris is not well enough to do much and can hardly stand up since his stroke.

At least I know that I do not have any blood clots in my legs. They did an ultrasound because my legs were hot and swollen and very sensitive to touch. They did hurt with the swelling, lymphedema and of course severe fibromyalgia.

I am planning on having an early night as they have told me to rest. Which is all very well until you see my messy house.

Tomorrow I am planning to shower and get some water on my affected limbs seeing as the doctor said I could do that. To make that happen, I will be praying for strength in the morning. A shower is very taxing these days.

I will bid you goodnight then take my final antibiotics for the night and head to bed. 

Tomorrow is another day and with God's help my legs will be a bit better. I just want some improvement- and it is something I hope and pray for.

It's my new normal...

                                                                               

Lately I have been extremely tired and in pain. My fibromyalgia has flared, my knees are sore and my lymphedema has caused my legs to swell so much that the skin has burst in places and is leaking clear fluid.

I am on strong antibiotics to prevent cellulitis and the doctor has told me to rest my legs by keeping them elevated.

So I have had to think about what needs to be done daily just to keep the domestic wheels turning. Chris is battling his own health issues and cannot help much.

At the very least I need to feed us daily and keep up with the washing of clothes and dishes. And feed the cats.

So in the morning I rise, feed the cats and birds, feed us and test our sugars and inject our insulin and take our tablets. I check emails, budget and repeat prescriptions...

I pull the blinds up and let the sunshine in and if the weather is OK, I open the windows a bit.

I do a quick ablution and get dressed. Then I put on a load of washing. I rest my legs by having a foot rub on the couch to encourage the fluid to go up towards my heart.

About 11am I put the kettle on and change the clothes from the washer to the dryer. I later sort out his and her clothes and we live out of the laundry tub.

We have a cup of tea. I decide what to have for dinner and take some meat out to defrost. Then back to the couch which usually ends up with me taking a nana nap. I just can't seem to stay awake lately...

So with extremely limited energy, I start dinner around 5pm. And I have found cooking in cookie sheets so handy when you literally can't stand for long. I found a website here that is so helpful. 

While dinner's cooking, I feed the 3 cats again then I take our blood sugars and inject us. We then eat and usually I clear the table and Chris loads the dishwasher if he has energy.

I go around pulling blinds down and turning lamps on to give a restful ambiance. Then I turn our electric blankets on low. Then I dispense the night medications and put my swollen legs up.

I know it doesn't seem like much to women who enjoy good health but it is a lot for me to do each day.

I go to bed about 10pm and listen to the Bible on YouTube. I like Sir David Suchet's readings. Most times I fall asleep pretty quickly.

I usually wake about 7am and start the day much the same as described. It's my new normal...

It was 'good' not perfect

 “The message from church and culture alike to many people with disabilities has been that their lives are, at best, an exception to God’s design and, at worst, a problem to be resolved. Their differences are often received as intrusions into an otherwise idealized human norm,” wrote John Swinton last year.⁠

 

“Such a vision turns the hospitable logic of creation on its head. It suggests that belonging is conditional, and therefore one must change in order to be welcomed. In this way, communal belonging that was meant to reflect God’s goodness becomes a place of exclusion. ⁠

⁠

The church must learn to hear and resist this distortion. If God’s creation is good, then every life within it, regardless of capacity, cognition, or conformity, is already gifted with divine affirmation.” ⁠ https://chrst.today/4lPcCIM

Follow the above link to this article from Christianity Today

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.

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.