Monday 29 April 2024

It's not about how fast we spin our wheel



Whether you have the flu or a cold or suffer like I do from fibromyalgia, you will have days where your body forces you to rest simply because you can't do anything else.

But that doesn't mean that resting will make it better. Nor does it guarantee that you will gather more spoons to use when you rise up from your sickbed.

When you are chronically ill, you don't get better and rest definitely doesn't leave you feeling refreshed and full of energy.

The most rest can do for us is give us a temporary respite from forcing ourselves way beyond  our comfort zone to serve our family.

Needing to rest can make those who don't understand chronic illness to make us become the victim of nasty retorts stating that we are lazy and putting it on in order to take to our bed. 

Being that fibromyalgia is one of many invisible illnesses, we are often maligned as malingers and the angst that this creates can cause us to become depressed as well as angry.

We didn't ask to be sick and most of us in fact push ourselves way beyond our comfort zone to prove to ourselves and others that we are not lazy.

I think as fibromyalgia is often a prolonged illness that we would do well to take thoughts of others directed at us to be taken into the captivity of Christ Who doesn't condemn us but Who loves us at all times. 

He understands and doesn't condemn us. We have to take His Word that He loves us as we are.

We need to learn to switch off from those who condemn and criticise us for taking frequent breaks and nana naps. We know we are doing the best we can and our worth is not about how fast we spin our wheel.


 




Wednesday 24 April 2024

Play it in your own time!


 

As   we shared before, I  am supposed to  be getting help in cleaning our home. But it has turned into a mess  and I  have fallen in  the  cracks.  There was  a woman  who  came for three weeks, but  she was woefully indolent and a liar.


We are paying a co-payment to have her clean for two hours a week and sadly she wasn't worth the money.

For the first half hour she chatted and I had to bring her gently back to why she was here. Then she bustled around and "cleaned" stuff. 

When I say "cleaned" I am being generous. We could see no difference in our home cleanliness even after she was gone.

Chris was ill and in our bed, so I said to her that she needn't worry about changing it this visit. I asked her to pay particular care in the bathroom as it was looking like it needed a good clean. Particularly the bath. And I wanted the vinyl floors washed.

With half an hour to go, she came out and sat on the living room carpet in front of our beautiful backyard and watched the birds and played Candy Crush on her phone.

Knowing that she hadn't done much I asked her if she had cleaned the bathroom and toilet. She nearly shook her head off in affirmation. I had my doubts though.

I asked her if she had mopped the floors and she said "You don't really want them washed today, do you? They still look clean!" 

When her knock off time came, I begrudgingly signed the paperwork, confirming she had been.

Suspicious, I went into the bathroom. There was my hair still in the bath, the cap of the shampoo on the floor of the shower and Chris's whiskers in the hand basin. There was a cotton bud on the floor.

I took a quick look at the toilet too. How can I put this delicately? I can't. There was grunge still at the back of it. So without changing our bed or mopping the floors or doing the bathroom and toilet, she spent a total of one hour vacuuming our very small home. I was angry. I hate being lied to.

That afternoon, I rang my aged home care co-ordinator and told her what had happened. If they couldn't replace her, I would prefer none. I didn't want her back in my house.

So five weeks passed and I heard nothing. Turns out the home care case manager for me has been off for the last three weeks and I have fallen between the cracks.

So when I get someone to help me is anyone's guess. And for me, it can't come sooner. Not that our home looks like a burgler has ransacked it. I keep it tidy and it is always decluttered.

But my home is dirty. As any homemaker will tell you- it effects how you feel. And physically with the fibromyalgia flare brought on by driving a lot last week, it sucks even more.

There's not much I can do but wait again and hope they send me someone who has a decent work ethic.
Though from what I have heard, none of them does a really good job.

But as Sacrificial HomeKeepers know, we have to ditch perfectionism and accept that anything is better than nothing. Except the home carer who used our money to play Candy Crush in my living room. 

She should play it in  her own time!


He who is slothful in his work is a brother to him who is a great destroyer. Proverbs 31:9

Tuesday 16 April 2024

A boring home life




It's Tuesday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a  load of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's a boring day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a good but boring home life! 




Saturday 13 April 2024

Russian roulette

 


I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

It's a game of Russian roulette to take a gamble of feeling better after a nana nap. Waking up can go either way.

Are you willing to gamble reliving morning muscle pain again? Lotsa luck!




Thursday 11 April 2024

I'm a plain Jane!




Each morning when I get dressed, I wonder what the day will bring.  I have learned over the course of time that those days when I have a pyjama day, something crops up and I have to don days clothes in a hurry. So I try to get dressed early in the morning.

I don't worry with makeup and just brush my hair. I have dresses that have sleeves and some that don't. So I can dress according to the weather. Or according to my rapid body temperature. Thanks to fibromyalgia, my thermostat's broken.

Not a great fan of jewellery, I just wear my wedding ring and usually I just wear some stud earrings of a matching colour as my dress. Usually I am home, so I have some pretty bibbed aprons that I match up with the colour of the day.

Most times because of foot swelling, I go around the house barefoot, but I do have some black Skechers I wear when I go out. I don't wear socks or stockings. 

These clothes work well for me- tidy, plain and modest and easy to wear and wash. No ironing. 

I would love to have long hair but I lost a lot of it due to illness and now I find it easier on my arms to keep it short. My polymyalgia won't allow me to raise  my arms, so my hair's short.  I wear it in a pixi style which is like my clothes, easy to manage.

I would say my style is plain but tidy. And when you are chronically ill and in pain, it is enough. 

It's a good job today's clothing is not reliant on stays and corsets and many buttons and ruffles, because I just couldn't stand long enough to get it all right and I just don't have the patience. Also, I need to breathe freely and I know I couldn't with a corset! 

I really aren't that great to look at, but I look feminine and that and clean, tidy and modest is OK. I guess you could call me a plain Jane! 



Wednesday 10 April 2024

A permanent thing

 


So I haven't been feeling the love for weeks now. In fact I seem to be enduring the mother of all flares with slight variations on the depth of the flare.

My polymyalgia rheumatica seems to be going but the fibromyalgia pains and fatigue and brain fog are still draining me with their presence.

I wonder when the fibromyalgia pains will abate like my PMR. But they don't. Ever.

So I was reading over the blog trying to recall how long this current flare has been going on, and it was no surprise that it has come hot on the heels of the one before that. In fact, I don't think it ever went.

I got to thinking that maybe they aren't true flares. Maybe it's one continual run of severe pain with only a slightly better day thrown in here and there. But no real breakthrough. It makes sense.

It makes sense that's why I constantly start each day in severe pain and enjoy no spoons to think of because I am in a major flare. One that never goes away.

The only difference between "flares" is that I may have managed to chuck some washing in the machine or put a couple of appliances back where they belong. So I consider myself not flaring.

The only time I get any relief is when Chris rubs my sore feet- and fibromyalgia also is to blame for that, vying with peripheral neuropathy from my diabetes.  I usually fall asleep for a little while.

Sleeping brings no real relief as I wake myself in pain trying to move in my bed. It's a viscious cycle.

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

If I did manage to get comfortable I think bed could easily become a permanent thing- along with my so called fibromyalgia flares. Because they definitely are for me, a permanent thing...




Sunday 7 April 2024

It's gonna be a PJ's day.

 


The rain is pouring down but it's not cold just pleasantly warm after the last few days of summer heat. Xena is still asleep on my bed.

Chris is watching TV and I have got the breakfast dishes soaking in hot soapy water. The house is tidy and cosy. Life is good.

I woke up early and left Chris to sleep. I heard the birds calling each other and watched as my beloved magpies came down searching for some left over sausage among the rice dish I put out for them last night.

Carefully opening the sliding door that opens to the garden where they congregate waiting for me to feed them, they sat only inches away from me. Gradually they are coming closer to feeding from my hand. 

The washing machine is churning away at the load of clothes I am washing. I try to do a load a day so as not to use up all my spoons in one hit, folding them and putting them away. 

People with fibromyalgia would understand the need to pace oneself in order to achieve some completion of household tasks. There's so much job satisfaction in even doing one load of washing and putting it away. 

I have some steak thawing for dinner tonight. I am planning on cooking a vegetable intensive beef stew.
With the cooler weather and rain, the menu begs for a stew...

I still haven't changed out of my pajamas and it's 1pm but I don't really care. We aren't going anywhere and I am feeling pretty laid back and a tad achy. It's the change in weather.

It was a pretty slow but pleasant morning with Chris making me some breakfast and a cup of tea. The panadol is kicking in helping me with the aches and pains of fibromyalgia that's reacting to the weather change, but I am glad to report that it's not a fibro flare per se.

So in spite of aches and pains, I am feeling pretty good today, but even so, it's gonna be a PJ's day. 


Monday 1 April 2024

She was right!



You may remember that I had to give up knitting and crocheting as it hurt my hands too much. It was so disappointing!

I was visiting my twin sister one day and I found her crocheting a beautiful baby shawl. Now her hands are sore with her lupus and arthritis, and when I asked her how she managed and  told her I could not longer knit or crochet, she encouraged me to take it up again. 

She assured me that her hands had improved since she took up her handcrafts again, and I resolved to give it a try. My hands improved and I had better flexibility in my hands and wrists. I was rapt! I needed to do something creative and those last few months.

With fibromyalgia it is important to find something to take my mind off pain, and I find knitting or crocheting does that to some degree. I also believe it is healthy and very satisfying to be creative and I have knitted, crocheted or sewn many gifts for family and friends over a lifetime.

I also enjoy blogging and so I thought to create a new one, highlighting a lot of those creations, mainly to remind myself of happy hours making and giving each one.

Currently I am working on making baby shawls and jackets for my grandchildren to use for their own children when the time is right... an heirloom gift or legacy if you will.

With being 71 years of age, I obviously don't know how long I will be able to continue doing this, so I am working on them now, either giving them directly to those old enough to keep them themselves, or to their mothers to keep until the time is right.



Keep clicking and stitching,

Glenys