Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts

Wednesday, 30 April 2025

Bells and whistles

 


I was deep in thought on my computer this morning when something started beeping in the house.

Chris called out to me asking what went off. I did a mental check going through the chores I was currently doing. Or I should say, that my appliances were doing for me.

My washing machine was still washing. I wasn't using my oven. My robotic vacuums were fully charged waiting to be instructed on when to start cleaning. My dryer was not in use. The air fryer was not in use....

I asked Chris if he had left the fridge door open... he hadn't. There was only one thing it could be: the dishwasher. It was! 

It was such a relief to locate the beeping sound. Doubly a relief that the dishes were washed. Now we could find a clean cup to have a cup of tea.

I have had many painful conditions attack my body at once- fibromyalgia, PMR, TMJ and knees that keep wobbling out of place and my lymphedema is so active that I can't wear my usual slippers. My feet and legs are too swollen.

Along with these painful conditions has come the need to sleep around the clock. So I have been remiss in keeping the dishes washed and ready and although I have been washing our clothes, we have been living out of the laundry basket. 

I know that's not ideal, but chronic illness and consequent no spoons has dictated my pace. When one has constant chronic pain, one's attention span is short and the beeping helps bring my attention back to the task at hand. As always, I needed a clean cup to make my tea this morning.

But I digress- back to beeping- I am glad my applicances bring me back into focus and come with bells and whistles..





Thursday, 24 April 2025

I think it was well worth it

 


As you know, I love watching the birds that come in to our back yard. Naturally, they fly off as soon as they notice us sitting watching them.

We don't have a vertical blind which would make it private enough to watch them without them seeing us. So I had to come up with something that wouldn't damage the house but does the trick.

Anyway, first we tried cling window dressing that was mirrored from the outside, but clear inside. It should have worked but was not very good quality and my granddaughter gave up.

When I was looking for something clingy for the window, I came across these decals. So I got some.

Putting them on was difficult for me... Chris has vertigo and couldn't help me and I didn't want to ask my granddaughter to come all the way up here to put it up again.

Anyway, it works a treat. The birds come and go and give us much enjoyment.

It was very difficult for me to apply, especially the bottom decals... my spoons evaporated quickly and my muscles complained loudly.

The next morning, I woke up with the mother of all fibromyalgia flares. My back hurt, my bottom muscles screamed, my neck and shoulders ached abominably, and my arms and wrists felt like they were tearing and my knees were hot to the touch and refused to bend..

Because of my lymphedema, my legs were propped up on pillows while I slept. I took some Panadol Osteo to help with the pain and only cooked a light dinner. 

I can now sit at my dining table and watch the birds which relaxes me so much. 

Notwithstanding that I had a fibro flare over putting the decals up, I think it was well worth it.






Friday, 18 April 2025

It's a sacrifice!


 

Today is Good Friday and I have been reflecting on the courage Jesus had to endure the humiliation, torture and crucifixion in order to pay for sins that we committed.

But a lot can happen in a few days, and Jesus overcame sin and death by rising from the dead on the third day.

For those who believe He did this for us- taking our place and bearing the punishment for sin so that we can have right standing with God- He offers eternal life. There is joy in knowing that Sunday is coming.

I am having family here for Resurrection Sunday and I am preparing a roast lamb dinner, vanilla slices, apple roses pastries. 

With the four of us unable to actually get to church, we will be taking communion to remember and honour Christ... For us, home is church... not ideal, but our hearts are in it, and for Him.

My fibromyalgia and angina are bad, so I am resting up today and tomorrow. I will be using all my spoons on Sunday. But I am nevertheless looking forward to thanking our Saviour and rejoicing on the holiest of days for us Christians.

Preparing this lunch will be a sacrifice for me, but nothing compared to the one Christ faced to redeem us and pave the way to eternity with Him.

If you are interested in becoming a Christian, here is the link...  Happy Easter to all who celebrate!



Wednesday, 9 April 2025

I don't think I would cope!

 


Well, my fibromyalgia flare has abated, and I have been doing a lot of knitting as watching TV bores me to tears.

We are in Autumn or Fall here in Australia and the mornings and evenings are cold, so there's nothing nicer than doing some handcrafts in the warmth each evening and throughout the day.

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... 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!



Thursday, 3 April 2025

Quietly dwelling

  


Next month I will be 72. All things pertaining to ageing are at an all time peak. Everything that can ache, does.

Every day I need a nana nap to get through to dinner time and really there's nothing I can do to change that. I am forced to go with the flow.

I used to buy Lite N Easy food as part of my Aged Care package, but Chris and I have become sick of it. I have no choice but to cook.

As dinner times are when my spoons are usually spent, I sit down at the kitchen table and prepare whatever I can beforehand. Then it's just a matter of cooking some meat and doing some gravy.

Both ageing and fibromyalgia keep me living in pain, but I try to not complain about it too much.

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.



 




Saturday, 22 March 2025

I won't succumb to it...

 


I am currently unwell. My spoons have evaporated and everything that can ache or pain me, is. I am in a fibromyalgia flare.

We Aussies are in to our autumn or fall but the weather has been erratic with many days over 30C or 86F. With lots of rain to make it humid and steamy. It's bad weather for a Fibromite.

We have air conditioning but I have missed being able to go out into our back garden. So with temperatures forecast to be in the high 20's, I find I will be able to do that later on today.

I have managed to do some basic household chores. Our beds are made. I have tidied the kitchen and done a load of washing. 

There's a tray of sirloin steak out on the benchtop thawing. Later on in the afternoon I will peel some potatoes to mash and some pumpkin to go with it.

The birds are calling me. I am going to change the washing over and put it in the dryer then rest. Every Fibromite knows if you don't rest on bad days, a flare will last longer. 

After the next few chores, I am planning to go outside and read...and I won't succumb to false guilt.   




Saturday, 15 March 2025

Don't let them dictate




I have been very ill off-and-on for several weeks now. But I needed to drag myself out of bed and "Make an Easter for the Family" as Connie Hultquist would say.   I will be okay. My husband (who is disabled) and I learn to live in pain and suffering.  He will say that he is going to suffer whether he is doing something in life, or sitting still and hurting.  He chooses to do things and live, rather than do nothing and suffer. He will suffer no matter what. But we put on a happy face and enjoy the family and our home and all the wonderful blessings we have.  Mrs White of Legacy of Home

 

As a chronically ill woman, I have seen two lots of sufferers- those who feel like Mrs White and I and those who take to their beds and surrender to it.

Just because the former types of ill people push on as much as humanly possible does not mean that their illness is all in their head and therefore subject to discipline of oneself. 

It means that they realise that they may as well try to live as normal a life as possible instead of taking to their bed like the latter half and doing nothing... 

We all have days where illness or disability makes it impossible to do anything,  ensuring we have to rest, but those who never try to live won't even try to have a life even on better days.

Last week I had a fibromyalgia flare and it was truly torture to try to do those jobs I need to do.. I had no other choice than to rest. But today is the first day I felt a bit better, and so resumed my "normal" routine and feel better emotionally for it.

Others would prolong the flare and continue to stay in bed as they often fear bringing on another flare. Instead, they often succumb to depression because they have mentally  put themselves in the invalid role and therefore often endure the loneliness and joylessness of the invalid.

Over the past 24 years of fibromyalgia and other illnesses, I have decided to push myself a little in order to enjoy more of my life. But there's always a balance- if I feel particularly down, I will take a nana nap or actually go to bed.

The trick is learning to co exist with these illnesses and try not to allow those dictators called "Spoons" to literally dictate how we will live each day and how much enjoyment we will derive from each of those days.

As I have been up for quite a few hours already and done some housework, my muscles are cramping and I need to rest. But at least I have some job satisfaction and can cross some tasks off my daily to do list...

Until next time, may you find some spoons to energise you and some motivation so as to enjoy the most of your life that you can today...

Don't let the spoons dictate your life every moment..

 

Tuesday, 4 March 2025

Some more to add to the mix

 


I have another couple of issues to add to the mix. Lymphedema with skin changes similar to this picture above.

I also have sugars over 17 fasting and it's making me feel dreadful.

I have just changed doctors since the move and she has gone on vacation for two weeks. I need to go on insulin.. 

I have been putting castor oil on my legs and it seems to be stopping the scaling which hopefully will stop the legs getting infected. My right arm is also affected...

To add the final nail in my health, I have been suffering from costochondritis which is very sore.

With a fibromyalgia flare happening as well, I am truly feeling dreadful. Prayers would be very much appreciated.



Monday, 17 February 2025

Setting things to rights



So today is Monday and unlike some people who hate Mondays, I quite like them. I see Monday as the first day of the week and it is a day to put things to rights.

Sundays are our sabbath and we only do those things that are truly necessary. After all, it's supposed to be a day of rest.

We chill out and watch online services and listen to worship music and nap. But with Monday comes the need to plan to incorporate those tasks that went undone yesterday. 

I usually have washing to do and at least one load of clean clothes to fold. I try to get caught up with that plus any dishes that need washing get put into the dishwasher.

For me the tasks that take the most time and are frequent flyers are washing folding and dishes.

Provided I am not in a fibromyalgia flare and have enough spoons, (and this is always unknown and erratic), I will tackle these today.

As I said, I follow Sylvia's Lists and I will loosely follow this for Monday..  

There's always a feeling of satisfaction when/if I can do these tasks on Monday's... but still, come to think of it... I always feel happy any day when I am setting things to rights..




Saturday, 1 February 2025

We rarely get any validation

 

Those of us who suffer from fibromyalgia often have little sympathy or even care from a lot of people.

Most people haven't even heard of it and most who even have, often believe it is not a serious syndrome to suffer from.

They don't realise that fibro is in fact all encompassing to the afflicted person and has the potential to dictate how we live.

Not only does fibromyalgia dictate our physical life, but our social, mental and even spiritual life. The person who states that it does not have a great impact on their life has not experienced a full blown fibromyalgia flare.

It is a sad syndrome as it has very few visible symptoms and people imply that we are faking it.

The only thing we fake is feeling better than what we do. We rarely get any validation.




Thursday, 23 January 2025

It is what it is

 


So while I was still asleep, just after sunrise, Chris took some photos of our back garden.

He told me there were about 40 corellas eating the birdseed and meat scraps from dinner that I threw out after dinner.

Later on some rosellas joined them and after they left, the sparrows came down. Our place is like an airport.

Later on our cleaner from the Aged Care Provider is coming for a couple of hours and I will be straightening up the kitchen and loading the dishwasher as soon as I finish talking to you.

The washer's already going as I am washing some bedding for her to change the beds today. Of course, I will be using my dryer.

With fibromyalgia and polymyalgia rheumatica, I always use it. I have tried using my clothesline but the pain is really debilitating and I can't bear it. Like I always say, it is what it is.




Tuesday, 24 December 2024

Letting nothing you dismay!

  


With the continuation of my fibromyalgia flare, I have been simplifying my Christmas decorating, gift buying and so on.

Chris put a wreath on our front door and I decorated our mini Christmas tree. It sits on our coffee table measuring eighteen inches and has lights.

I have no spoons to go shopping and have done most of my Christmas gift buying online over the year. It has saved me so much energy. These days, just getting dressed is a struggle, let alone going out shopping.

Woolworths supermarkets have a delivery service for online shoppers and I take advantage of that. I have my food list for the festive season and I will be ordering from that.

Cooking wise for Christmas Day, I will be preparing  a fresh salad and some curried hard boiled eggs. The rest of our food will be pre cooked. We will be sharing a meal with family  who are all going to bring something.

Gift wrapping is not a job I enjoy and with a fibro flare in full force, I will be giving the grandchildren money.

Christmas with a chronic illness like fibromyalgia is a stressful time, but with a bit of planning, it is possible to get through and maybe even enjoy the day.

So I find myself ad libbing to the carol "God rest ye merry gentlemen!" by singing "God rest ye tired Glenny Hen!" followed by "let nothing you dismay..."

Let's resolve to make this Christmas a simple affair and enjoy the festive season as much as possible in spite of fibro. And remember- we will be making memories that will always be cherished in years to come. "Let nothing you dismay..."

Friday, 13 December 2024

Better days are coming!

 



So yesterday my occupational therapist and her colleague came to give me a trial run of my new motorised scooter, similar to the one pictured here.

It has all terrain wheels and an hour's worth of charge, plenty for me to go visit my sister who lives nearby.

It is part of my Aged Care package and will make my life so much better since I can no longer drive.

This scooter requires no knee action which is great for me as that was the reason I can no longer drive.

Also my bath lift seat is coming in a few days and I am looking forward to that as well. I have bought some Magnesium bath flakes to soak myself in. I am hoping it will lessen my fibromyalgia muscle pain...

As far as hygiene and travelling independence goes, I can say that better days are coming! 



Sunday, 17 November 2024

Rome wasn't built in a day!

 


As you probably know, we have recently moved again. It is almost complete with just a few boxes to unpack.

We are so very tired and I have exacerbated fibromyalgia and angina pain.

We love this new house and is still quite large like the one we have just left. But honestly, I really hope we dont have to move again because I feel quite done in.

Most things now have found a new home, but as soon as I recover from the move, I will declutter and organise our things better.

So I am finding myself falling asleep at the computer or feeling really razzed, and I have had to have a nana nap during the day or I won't have enough spoons to cook dinner...

And speaking of dinner, I have been making use of my slow cooker to help me when I haven't got any spoons. It has helped take the pressure off me.

Lately having no spoons is my new normal so I have had to rest and pace myself. 

Something this move has taught me is to be patient. I have had to learn to wait until others are able to help me and my new mantra is "Rome wasn't built in a day!"




Tuesday, 5 November 2024

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...


Wednesday, 9 October 2024

First we have coffee!

 


As you probably know, my twin sister is ill and has been living with us for the last five months.

She has now moved into her own new rented home and my son, her carer has moved in with her. She's in need of a carer.

Helping her has left both Chris and I spoonless and that condition is not going to improve any time soon. We have now found a new rented home two minutes away from them and the move is happening in a few weeks.

Although we feel the effort will be worth it, finding the spoons to move is a hit or miss thing. I must force myself to keep going.

I am suffering from an expected fibromyalgia flare, my knees are hurting and I cannot move my neck thanks to polymyalgia rheumatica. 

I am happy to be moving but not so good with the pain. But I pace myself taking frequent breaks and drinking endless cups of tea.

My kettle is constantly boiling for a cuppa and it is the first thing I do each day. I join millions of others in enjoying to lifting qualities of coffee or tea to start each day.

Like I read in a book, "First we have coffee!", it has proven to be true for me, only my lifting beverage is tea! 

Saturday, 28 September 2024

Enough acid to rival Chernobyl

 

I have been on Somac for GERD for at least 20 years and I have just learned that it has been allegedly responsible for giving stomach cancer and kidney disease to many users.

Honestly, I don't know what to do and so I have made an appointment with my doctor next week to discuss it.

My GERD causes me to aspirate my acid and stomach contents thus inducing aspiration pneumonia three times so far. I am now in a dilemma to know what to do.

There's been a class action in Australia and it seems that many people have suffered after taking it. I will update after I have discussed it with my doctor.

Honestly, it's a bad time to stop using them with being stressed, tired and fighting a long fibromyalgia flare. I pump out enough acid to rival Chernobyl's meltdown.



Monday, 16 September 2024

Shanks as pony


So today I handed in my driving licence. Sitting here tonight, the enormity of my decision and resultant actions gave me pause to think.

The fact that I have torn ligaments in both knees meant that I no longer have enough strength to apply the brakes or accelerator. I have become a danger to myself and others.

With constant brain fog from fibromyalgia as well, I felt it was time to stop driving.

Vic Roads sent me paperwork to have my doctor and optometrist clear me to keep driving as I suffer from type 2 diabetes and that can effect the eyes.

I was going to get this done but then I realised that my eyes are not the only risk when I drive- my knees not working is as great a risk.

So instead of going to get my eyes checked, I decided to just stop driving. As I said, I handed my licence into Vic Roads.

And now, I am sitting wondering if I have done the right thing- yet I know I really had no choice.

There is always the option of walking around if I have no one to drive me somewhere... it is known as shanks as pony- using one's legs as the mode of transport.

Herein lies the problem with that- there is no shanks as pony, because I can't walk with torn ligaments that can't be fixed.

I hadn't thought much about it until now, but here it is- no driver, no car, no money- and sadly now, no shanks as pony!



Saturday, 7 September 2024

Sufficient to the day

 



As  a woman who suffers from chronic illness and pain through fibromyalgia,  I often succumb to bouts of depression. I have a few tips on overcoming it. 

First and foremost, start your day in prayer. Ask God for the strength to face the day and play worship music to lift your spirit.

Try to be in the moment and take one day at a time. That's all we can tackle otherwise, the sense of failure can be overwhelming. We aren't meant to take it on all at once.

If you try to just focus on the next task at hand and not dwell on the future, it will help your attitude to realise that you have accomplished something. It will then snowball as you progress through the day.

With chronic illness, I set myself just one or two daily goals that are achievable: for me it is wash the dishes and put away the clean clothes. I only focus on those goals that I know are achievable and if at the end of the day, they are done, then I feel a sense of accomplishment instead of defeat.

Nothing depresses me more than a feeling that I have achieved nothing all day. I don't worry that others may say "for goodness sake, it's only washing dishes..." for us in the throes of illness, be it mental or physical- it's a big deal. Delight yourself in small victories.

I find that in setting small goals it knocks the cloud of gloom off its perch and makes me hopeful that I will be able to rise above the depression. Give yourself a high five and see that any job you do is a step in the right direction. It still blesses your family and serves the LORD. 

I think when we are depressed and/or in pain, the desire to go Home to the LORD is strong. After all, we are tired of living in a world of pain and we look forward to our redemption. But in saying that, we still have a work to do until that time. 

As FlyLady says, baby steps. But just taking baby steps lead us out of our rut and it is that first baby step that will hasten our healing of depression and sense of failure. 

  Sufficient to the day is the evil thereof. Matthew 6:34 

Monday, 26 August 2024

It is what it is! indeed!

 


In my efforts to still be mistress of my home in spite of severe health issues, I have tried to pare down my necessary daily tasks.

I can forgo doing the washing for a day or two. I can not make my bed or do much cleaning. But every single day I find I must cook, which is a necessity that brings the second necessity of the day: doing the dishes.

Oh I have left them before during a fibromyalgia flare. But I have learned that they seem to multiply like rabbits- my kitchen sink and bench are testimony to this!

I have left the dishes until the morning or even until the evening, but the mess on the plates and cutlery makes the job not only labourious, but "yucky". So I have learned to keep abreast of them.

Now I know some people use paper plates to avoid doing the dishes, but I am old school. Besides, everything tastes better on a china plate or in a glass or cup. I detest polystyrene cups or picnic cups.

Occasionally during a bout of angina or fibromyalgia or even a day of back pain, I am happy to order take away meals... but it is such a nasty blow to the budget that this is rather rare.

So then I am now convinced that I must acquiesce to doing the dishes daily as we absolutely must eat- there's nothing else I can do about it except cook.

Finding two daily essential jobs wasn't easy because there are so many more things one could count as essential. 

More over, one thing chronic illness has taught me is that spoons dictate not only one's lifestyle but standards.

One can either accept less high standards or die trying to sustain them. And given the effort in just breathing and being some days, the standards become more achievable.

I have had to accept what the young ones say, "It is what it is!"  Indeed! It is!