If not now: when?

 

This fatigue from chronic illness- mainly fibromyalgia is wearing thin. My patience with myself is almost over.

Lately I am too tired to do more than 5 minutes of cooking, washing, shopping for food and even paying bills.

I sleep fitfully, waking myself up with groans of pain as I try to find a comfortable position in my sleep.

My muscles feel like they're tearing, my head aches and I literally hurt from the top of my head to the soles of my feet.

I have been taking the advice of my doctor at the pain management clinic- playing Candy Crush to take my mind off the pain. A game lasts less than 5 minutes as well.

I realise I sound like a whinger, but I am truly over this rotten condition. And there seems to be no end to it as a flare now takes residence in my body but never leaves..

Each morning I wake up, I try to gather some spoons or energy, but once the kettle's boiled and the toast is eaten, that's it for me.

I push myself to take our bloods to monitor our diabetes, I inject Chris and myself, take my tablets and mindlessly drink my tea and eat my toast. And I wait.

Fed, watered and rested, I watch the birds outside eat the food we put out for them last night, and I wonder if I will get a breath of wind under my sails this morning. Because really, if not now: when?

I am sure she does it deliberately!

 

So I finally crawled into bed a few nights ago, glad to see a day of unbearable pain from fibromyalgia, bad knees and angina, drag to an end.

My little cat Xena was under my covers, sleeping with me like she does every night.

I was in the uneasy sleep where you are aware of pain but not quite awake. I must have been groaning or making strange noises.

Gradually, I became aware that Xena was near my face, rubbing her face on mine, gently tapping me with her paws and sniffing my breath.

I pretended to still be asleep to see what she would do. After a final sniff of my breath, she seemed reassured that her mother was still alive, and returned under the covers but she kept her back against my body... purring.

Somehow her purring was very soothing and as I reflected on a loving cat's healing ability to calm, I fell asleep.

I once read about purring being calming for us humans... and not for the first time, I felt the need to share in the blessings of  owning a cat. I highly recommend it for us Sacrificial Home Keepers.

Xena's purring often occurs when she settles beside me and as I said, it does calm me. She is a very affectionate cat. I am sure she does it deliberately! 

Chronic illness is strange.

 

Chronic illness is strange.

One day I can clean the house, play with my kids, make dinner, and almost feel like myself.

The next day, brushing my hair feels impossible.

That’s the part people don’t see.

It’s not laziness.

It’s not a lack of motivation.

It’s a body that doesn’t keep its promises.

I never know what version of myself I’ll wake up to.

So if I cancel plans…

If the laundry sits another day…

If dinner comes from the freezer…

If my kids get an extra movie day…

It’s not because I don’t care.

It’s because I’m spending every ounce of energy I have just trying to make it through the day.

Chronic illness teaches you to celebrate things healthy people never have to think about.

A shower.

A trip to the grocery store.

Making it through an afternoon without needing to lie down.

If you woke up today and your body fought you every step of the way, I’m proud of you for making it this far.

Some days surviving is the victory. by Makenzie Taylor

Blessings, Glenys

It hasn't died.

 

I love collecting pictures of women joyfully cleaning and maintaining their home. But with all pictures, I can get very nostalgic.

Many moons ago, I was this industrious woman tending to her home, and I loved it.

With the beginnings of my chronic disease issues, I was often hospitalised and gradually what was achieveable with minimum effort is now impossible.

Many days now I spend most of the day in bed thanks to fibromyalgia, and even the days I am not bedridden, I can't move much thanks to torn ligaments in both knees.

At 73, I am able to get 2 hours help a week with the Aged Care Package. I look forward so much to those days. It is fun to plan what I need her to do. It soothes my soul to have a well run and clean home.

Some days, however I do get sad that I need another woman to clean for me, but as the young ones say, it is what it is!  There is no good in feeling false guilt because this only leads to the Pit of Despair.

On those days, I give thanks that there is a way to keep my home as I like it- just not with my hands. The happiness at living in a clean house still soothes the soul of this ageing Sacrificial Home Keeper who still loves her home...

and realises that spoons and muscles and knees may have died, but her love for her home, hasn't.

What chronic illness looks like.

I found this very true and interesting blog by Makenzie Taylor...

The thing people don’t understand about chronic illness is that it doesn’t just steal the big things… it steals the ordinary.

The walk from the car to the store.

Brushing your hair.

Getting dressed.

Standing long enough to cook a meal.

Carrying groceries inside.

Folding a basket of laundry.

Even getting out of bed.

These aren’t small tasks when your body is fighting itself.

Every step costs energy…

Every task comes with questioning yourself..

If I start this, will I be able to finish it?

Will I make it back to my car without feeling like I’m going to collapse?

Can I cook dinner without my body giving out?

These are the thoughts that quietly run through your mind every single day.

You learn to celebrate things most people never have to think about because sometimes simply making it through the day is the victory.

That’s what chronic illness looks like.

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.