Fading fast...

 

Lately it seems that my life consists of pain, fatigue, breathlessness and pacing. pacing. pacing.

Life demands certain things of us and for me it's looking after a sickly husband, a house that is in need of a good clean and now a convalescent sister who is here to recover from a nasty fall after hospitalisation for lupus.

On top of that, we are trying to find rental homes for her and one for my son who was her carer. 

My fibromyalgia is flaring  because I am stressed and all I seem to do is pace myself to ensure I keep the few spoons I wake up with.

I am back to sharing a bed with my husband as my sister is occupying my adjustable one to alleviate some of the pain in her injured back and legs.  Neither Chris or I are sleeping well at night.

So I follow a plan for a rest between tasks and by the afternoon I am so overcome with tiredness that I have to take a nana nap in order to have enough spoons left to cook dinner.

And as I sit resting, I realise that most of the day for me is now resting and pacing in order to just get through. even with minimal tasks planned.

And as the spoons diminish, I realise too that my strength is fading fast with fibromyalgia and old age. It is what it is.

I am fading fast.. the only thing about me that is fast! 

Enjoy being at home.

The last few days have seen me taking a renewed interest in cooking and house management.. it's been a time of feeling incredibly blessed.

Our home nurtures us so much. It is so comforting to be here, away from the hustle and bustle of life and just snuggling in  here. 

I have just turned 71 and I can honestly say that contentment and joy have caught me by surprise! 

The longings for adventure and new experiences has waned and I am truly content just following my basic routines.

Fibromyalgia and heart problems dictate my life somewhat and even though spoons are scarce, I still try to keep my home well and I even try to bake bread... this is where spoons and pacing comes to the fore.

In an effort to keep feeling peace in our home, I have stopped viewing news videos regarding the end days and I can say it has worked.

As I work on my computer, I have scriptures or some form of worship music playing. 

I am waiting on the LORD to come for us and while I wait, I keep guard on what exactly comes into our home.

I pray a lot that God will keep me in perfect peace because as the wife in our home, my moods and attitudes shape not only my day, but Chris's

Peace is the first thing to go and it's not necessarily from the words we speak. Attitudes speak volumes.

Our home can be a haven from the world for us and we should try to make it a clean and comfortable place that shields us from the world...  Our home is indeed our haven. Enjoy being at home.

It was good while it lasted!

So yesterday I woke up without the usual muscle pain and fatigue that characterises fibromyalgia.

I sensed that I had some spoons in abundance and I was in a quandary as to how I could best utilise them without giving myself a flare the next day.

I decided it would be sensible to pace myself which is what I did at first... I say at first because like all good intentions, they can fall by the wayside. And they did.

There was so much I had put on the back burner and left undone. But then it was a long time since I had any energy and to be honest, I was so used to living with chronic illness and fatigue that feeling energised seemed "abnormal"

So I started a load of washing and cleaned out Xena our cat's litter tray. Then I hung out the finished  load of whites... also something I have had to forgo due to no spoons and pain.

I rummaged through the fridge and cleaned out the out of date food. Then, remembering to pace myself, I made a cup of tea for us both and decided we needed some cookies to have for afternoon tea.

After I made a batch of cookies for the afternoon, I brought in my washing. It dried quickly because the weather has been rather warm.  Too warm in fact.

By the time I came back inside, I was wilting. My spoons were dissipating! Quickly! 

My muscles and back started paining me and it hurt to turn my neck thanks to polymyalgia rheumatica.

I left the clothes in the laundry trolley and kissed thoughts of ironing my pillow cases goodbye. I had so wanted to do that too... just one of the jobs that I had to put on the back burner, put back again..

Chris made me a cup of tea and I took some Tramadol. I only use them for top of the range fibro flares and knee pain.

As I sat sipping my tea and waiting for the Tramadol to work, I realised that I hadn't got much done in spite of some spoons. 

Xena had a clean litter tray. We had some cookies to wash the tablets down. The fridge had no science experiments but didn't get a thorough clean. And I hurt so badly for so little! 

If I ever get another day with some spoons, I will not bother to hang the washing out... I nearly always use the dryer since fibromyalgia found me. And I know my poor old broken knees will thank me for not walking so far up the back garden to the line.

I guess I can sleep on unironed pillowcases.. it has been known  to happen! And as the pain relief finally kicked in, I decided that you can't really win with spoons. They are devious little dictators!

Chronic illness is not for wimps and I refuse to give in to depression. I think all things considered, I do a reasonable job of keeping our home nice. 

Still it was great to wake feeling refreshed and alive! It was good while it lasted! 

I can't believe it!

 

The last five days have been a dream come true! I have been sleeping better and I have woken up with spoons!

I have been very careful to keep pacing myself as I don't want to get a rebound flare due to burnout. So far, so good!

It's been about 22 years since I have felt this well. I am very grateful for the respite from pain.

So unusual is this new found energy that sees me operating as a "normal" person, that it feels "abnormal"

But today, I will enjoy this new energy and thank God for it. If it wasn't me I would want to know my secret- no secret.. but in any case, I can't believe it! 

Here a little.

 

So today I woke with no spoons and I felt like I had been hit by a bus. But I really want to start this journey of reclaiming my house, so I bit the bullet and took my first step.

As the kitchen is always the first area that calls for attention, I decided to start there. I had cleaned up last night and only had a few dishes to take out of the dishwasher.All I had to clean up was the breakfast and morning tea dishes.

Fibromyalgia flares see that I simply can't do mornings, and as you can see, I couldn't raise a gallop until nearly lunchtime. All I had managed to do was pull up our beds, put a load of washing in and run my irobot, Sadie.

So by the time I had done the kitchen, it was time for a nana nap as my angina was playing up and I was finding just breathing enough.

So I had a nana nap which lasted a few hours, and I came out again but I still had no spoons to speak of.

My plan was to wipe down the kitchen benches or counter tops and start preparing dinner, but I had to leave it for the moment. Chris made me a cup of tea, we discussed what we would eat tonight and I sat down to talk to you.

I realise most people would say that I haven't accomplished a lot, but believe me, when you wake with no spoons at all, it is a lot. I know the benches need wiping down, but basically the kitchen's clean and I can start on cooking dinner as soon as I recoup.

I don't allow myself to suffer from "false guilt" anymore and I don't allow myself to be dictated to by my OCD perfectionist healthy woman of the past. She doesn't exist anymore. 

Everything we do is kudos to us Sacrificial Home Keepers. We push ourselves to achieve little by the standards of "normals", but to us, we have run a marathon.

So in a minute after I post this post, I will be cooking sweet and sour pork and rice. And then I will pray for enough spoons to see me sort the kitchen out- I hate getting up to a dirty kitchen and if I can do it before bed, it will be a gift from my previous self to my future self.

Tonight is bin night, so I will help Chris gather the rubbish and put the bins out. Come to think of it, they go out more often than we do these days! But it is what it is! With no spoons for both of us, staying home is a pleasure.

Anyway, I have at least achieved something today- working. pacing. resting. planning. It all adds up with here a little, there a little in the daily life of this Australian Sacrificial Home Keeper.

A big part of my life

It's 11.30 Saturday morning here and already we have been to have blood tests, come back and had breakfast and I have done a load of washing, folded clothes and stacked the dishwasher. 

They weren't able to get blood from me today so I have to come back Monday. This in spite of drinking water beforehand. 

Chris is sleeping and I am thinking of having a nana nap as I have no spoons left. So tonight I will be cooking pork chops with mashed potato and salad. I may serve a fruit salad for dessert.

The fibromyalgia is flaring and I am aching all over. I haven't recovered from the move yet. In spite of knowing I could/should do some more around the house, I know that I need to rest or tomorrow will be a repeat of today. Pacing and resting are now a big part of my life since fibro.

Stating your name and business

As you know, we have just moved and along with a new home, comes some new things to add to the decor.

Chris and I love this door mat. This verse is one of our favourites and when we saw it we wanted it. It can be personalised to add your family name.

It looks lovely at the front door. We still have pictures to be hung and some flat packs of furniture to make up. The unpacking itself is almost finished.

The plan is to gradually go through room to room and gradually declutter. But this will depend on my spoons. I have another fibromyalgia flare.

But we have been finding that even a concerted effort of 5 minutes at a time followed by a rest and a cup of tea has paid off. Pacing is critical with fibromyalgia and heart failure.

I am in the process of getting an i-Roomba robotic vacuum cleaner to help with the floors. This house is quite large and the passage alone is as long as a cricket pitch...

Neither Chris or I can vacuum these days and I am hoping that the i-Roomba will save on money to employ a helper to come clean the house for me. I will let you know how we go.

Happily, the robotic vac can manage both tiles and carpet without skipping a beat, so it will be able to keep our lovely door mat free of dust bunnies. 

Meant to be noticed, I don't want visitors to our home seeing the mat dirty- not when it's proclaiming our faith and intention of having a holy home. It's all about stating your name and business! 

Another day at The Beach

So we were watching the birds coming down for the seed and bread and I grabbed my phone and did a short video.

As you can see, the beautiful coloured small parrots came down in droves, making it a lovely afternoon at The Beach aka the couch.

With pacing and resting during fibromyalgia flares, I find the beauty of nature helps to lift my spirits and give me some peace.

I thought if I shared it, it might brighten your day. By the way, although the sound's not great, could you hear Xena crying "Mum!"? She badly wanted me to allow her to go outside.

I couldn't risk it as she would most likely attack the birds or at the least, frighten them. We don't want anything to jeophardise the possibility of another day at The Beach! 

You just don't know when it will break.

 

Over the last week I have been enjoying a respite from fibromyalgia pain and fatigue. I don't know why it happened, but of course I am glad it did.

During that time I have been busy cooking meals in advance for the next time I have the inevitable flare. It has been working out really well.

I have been carefully pacing myself, allowing 15 minutes of decluttering then resting. Emotionally, it's very satisfying.

Well, I woke up this Sunday morning and have had an unwelcome guest: you guessed it: another fibromyalgia flare. So I guess that I overdid it..So today I will be reaping the benefits of preparing some meals in advance. 

Conversely, though suffering physically, I am not depressed by this: I knew my respite wouldn't last forever. But oh how wonderful it was to have some spoons and to be able to go a whole day without a nana nap!

We Fibromites in regards to spoons and flares, are definitely babies in cradles swinging from the tree tops. We know that at any time the bough can break and we will come tumbling down. 

But it's best if we just learn to go with the flow and try to enjoy the respite: the bough might not break for ages, but you never do know.

Making the most of my spoons

So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.

 

But then again, maybe not!

 

With the start of our summer tomorrow, we have been having some very lovely days this last week and today. I have enjoyed the respite from constant rain and so has my body.

Fibromyalgia has taken a back seat and I am enjoying having some spoons. It's been so long that it is a surreal feeling. 

I have been washing our bedding after the winter months and will be packing away our doonas. We both don't sleep very well and so we prefer minkie blankets. They are light and easy to throw off if we get too warm, yet warm enough to preclude the need for the heavier doonas for a drop in temperature.

It's such a joy to open the windows throughout the house too. We are fresh air freaks. There's nothing like the smell of the early morning. 

I am going to make up my favourite cookie recipe today. And I think I will bake some sultana muffins for Chris. He loves them. 

In stark contrast to flare days, I have already had my shower and gotten dressed. I need to take our bloods and give Chris his insulin injection. I think I will serve him some soldiers for breakfast this morning.

I have pork chops thawing for dinner tonight. I may do an egg salad to go with them. It's salad weather here at the moment.

As I must pace myself so as not to bring on another flare, I think in between tasks I will go out in the back garden and sit on the garden swing. My friends the birds are so tame that they actually come down to eat almost from my hand. It's so relaxing!

I have a lot of things I want to do today, but nothing compares to sitting in the swing in the sun watching the birds. So maybe I will get all those things done, but then again, maybe not! 

I am very grateful!

I am feeling excited today because I actually feel human. I even have a few spoons! This is so unusual that I feel like throwing a party! 

The Prednisolone has helped me get over my polymyalgia rheumatica and fibromyalgia flares and I am weaning off them. My blood pressure is coming down too.

It probably is because Chris had a good report from the doctor on Wednesday. Fluid in his lungs, on his legs and feet is gone. Bloods are better as are his sugars. Just high BP but not overly worrying.. He's sleeping in bed again... so. very. grateful! 

Those of us who are chronically ill know that stress exacerbates our illness and it certainly was the case the past fortnight. 

I am keeping up with the dishes as I mentioned a few days ago and I am pleased to report to you that they are still under control.

Today I have done a load of washing and I am presently washing and bleaching all my towels as I have been chucking them in the washer without sorting the wash and they are a horrible grey colour.

With the dryer my spoons will not be taxed too much. I am doing roast chicken, roast potatoes, and vegetables for dinner.

An old hand at pacing myself so as not to burn out for tomorrow, I will be resisting the urge to do more than I should.

In the recesses of my mind, I can vaguely remember that feeling of joie de vie that comes with youth and health. It's almost how I feel today. I am very grateful.

How to work without dropping from exhaustion.

Sometimes we can get so busy trying to complete our long list of tasks, that we forget to take time out for ourselves during the day.

By time out, I mean taking breaks to keep hydrated, to eat a meal, attend to the calls of nature or to just sit and contemplate one's navel or day dream.

It's important to our mental health as well as our physical well-being.  When we are chronically ill with fibromyalgia for example, we need to learn to pace ourselves between tasks. And here I must say, one should just enjoy the rest break and not feel guilty for taking time out.

It takes a bit of planning to feel productive as well as pacing oneself in order to not suffer too greatly the next day. Here's what I do...

• I write down just the main and most important things I want to achieve by the end of the day. 

• Then I pencil in how long each task should take. 

•  I work through that list with breaks in between. 

• I allow 15 minutes between tasks. 

•  When I see how soon I can be finished, it usually motivates me to get going. 
  

• Visualising how the house will look better after helps too.

• Using Sylvia's lists can be helpful too.
  

Working out how long the list of tasks should take ensures that regular rest breaks are taken to ensure you don't run out of spoons before the list is complete.

There's nothing nicer than reaching the end of your list and feeling a sense of accomplishment without working till you drop from exhaustion...

Devious little dictators.

 

Well, today I woke up with some spoons! As I sit here talking to you, I have a list of things I want to achieve. But I have to treat spoons with respect, or they will be my undoing.

Having spoons is so novel and rare, that I find instead of rejoicing, I am afraid. "Why would you be afraid of having some spoons?!" you ask. Good question.

Feeling energy or having spoons is so unusual and longed for, but it's fraught with dangers for the unwary. Dangers of overdoing and ending up with no spoons not only for tomorrow, but a few days after.

Spoons have the ability to dictate your life: you must treat them with respect. The desire to run with them is sometimes overwhelming. The urge to clean, shop or socialise is great. It can consume you.

And spoons will consume you, if not treated with respect. By respect I mean, circumspect and planned activity. For if given into, the spoons will not only be evaporate quickly, but so will your joy, optimism and future few days.

Like a lion tamer, appreciate the power behind these beasts, and hold them back with whip and chair if necessary. They will then serve you well, if allowed some calculated leeway as you pace yourself in small bursts.

Remembering to pace oneself is so critical to enjoying those spoons. And surely, spoons or extra energy should be an occasion to rejoice, but given that they have the  power to rule you , for the unwary, they can be devious little dictators

Flying with the birds

 

We came home on Boxing Day from spending Christmas Eve and Day with Chris's daughter. Xena was especially glad to see us- almost as glad as she was seeing the birds coming into the back garden to feast on the remains of the nibblies platter I ordered. (I took a photo for you!)  See the kingfisher on the door mat that the wind blew over?

We had a lovely Christmas with family and it was very relaxing. So much so, that my fibromyalgia flare is lessening. I actually woke feeling refreshed and my muscles weren't feeling like they were tearing like they usually do.

It's been so long since I have had a respite from fibromyalgia flares that it felt strange. Good, but strange. Isn't it sad that one lives on the edge of agony so much that when the pain even abates just a little, you find the sensation agreeable but foreign? Such is fibromyalgia!

I received some nice presents for Christmas, but my favourite gift by far is some spoons or energy! I feel like I have won the lottery! Now if my broken tail bone would hurry up and heal, I would be rapt!

You know too how I said we have a lot of kingfishers around? Well, yesterday I was washing some dishes and I saw a kingfisher on the fence in front of me. I grabbed some offcuts of  beef that were on the chopping board from the stew I was preparing and quietly opened the back door. I pitched the meat towards it and it came down to eat it, but its mother, who was quicker flew down and carried it off, much to her baby's consternation.

She flew off with the beef dangling from her beak and her baby followed squawking in protest. I am sure she would have been a good mother and shared it with him. It made my day. I have found God often treats me with little scenes that delight me like that. I call them Love Glances. Just between Him and I...but I digress..

Having a few spoons has brightened my spirits. I have washed clothes, done dishes, made our bed, cooked lunch and prepared dinner. 

I must hold back and pace myself though or I will crash and burn and be of no use tomorrow. It's a trap that I have fallen into before. But meanwhile, I will pace and plan cautiously even though I feel like flying with the birds! 

Basking in a new world

Over the years, I have spent many a time in a hospital bed.  For weeks at a time, I would lie in traction with Scheurmann's Disease, with hardly a visitor to see me.

I recall every time my mother came in to see me, she would ask if my (then) husband had been in. The answer was no. In fact, he would drop me off at the hospital entrance and then take off speedily. I would only see him again when I got home.

It got so bad that I would never let him know that I was trying to pass a kidney stone or needed another bout of traction until the moment I had to be admitted for treatment. Then all hell would break loose. It was just a sad state of life wherein I wasn't noticed or wanted until a meal had to be cooked or a shirt ironed.

Of course, I would lay internalising why he wouldn't visit me, and the end result was captured in one solitary, heart breaking and mind numbing word: rejection.

In between hospital stays, I limped along life, serving my husband and family, yet feeling terribly alone and miserable.

In the course of time I left my abusive husband and married Chris 4 years after leaving. All came crashing around my ears when I got fibromyalgia. 

I came home from seeing my rheumatologist for my wide range chronic pain and fatigue, and along with a negative result for lupus, came the diagnosis of fibromyalgia.  The trip home seemed unbearably long as I rehearsed in my mind the scene of rejection again awaiting me with this latest news.

You can imagine my amazement when Chris made me a cup of tea as he listened to the diagnosis. He was the epitome of compassion and love. When he handed me my cup, he was astonished to see me burst into tears: not tears of pain like before, but tears of love, happiness and relief!

Holding me against himself, he said he was so relieved I didn't have lupus, and vowed to help me in any way he could with this new thing called fibromyalgia. 

He was true to his word and together we learned about this new enemy that threatened to destroy my happiness. We vowed to never give it the power over us to come between us.

Twenty two years later, we speak in terms of spoons and nana naps and Lists. Pacing and paracetamol and heat pads are our love language.  

As for the young woman watching out for her husband from behind the curtain: she has gone now, to be replaced by an older happier woman basking in a new world of love and that vital word for all fibromites: validation. 

Spoons glorious spoons!

So the last few days I have been feeling a bit better and so with the new spoons, things got done. In particular, I have been spending quite a bit of time in the kitchen.

Yesterday I cooked zucchini spaghetti, ultilising my spiraliser. I really enjoy it. Today I made Jewish Penicillin and baked a madeira cake. Having a decent mixer makes the work much easier! 

We will have the soup and cake for dinner.

I have washed and dried three loads of washing today but because I need to pace myself so I don't relapse with another fibromyalgia flare, I am leaving that to do tomorrow. It won't kill us to live out of the laundry basket for a day!

So today, I am glad that I could put to use those glorious spoons!

Enjoying my time in the kitchen

So we have a lovely large kitchen which is a novelty for me. There's so much storage space and lots of drawers and  bench space. I love it.

It's just as well I am enjoying my kitchen because I have been doing a lot of cooking from scratch here. With the Corona Virus, and not wanting to shop too often, I am trying to rotate and use the oldest vegetables and canned stuff first.

Being at home all day, I have endeavoured to make Chris things he enjoys eating. There's nothing like the smell of a cake cooking or a soup simmering. It's important to me that I cook nourishing meals no matter whether we are isolated at home or not. 

I have some things that I haven't completed from the previous days, and hopefully my spoons will be sufficient to get the jobs done. On my to do list still are:

1. Fold clothes from yesterday and put them away
2. Mop the vinyl areas
3. Cook a shepherd's pie with mashed potato and peas for dinner

I already have cleaned the toilet and done a load of washing and sorted out our weeks' worth of medication. I also have made some pumpkin soup just to keep on the stove.

By keeping a blog like this, I can see areas that I have to still do or have fallen down on. Oh yes: and to remind myself on bluer days how much I am enjoying my time in the kitchen! lol 

Waiting for my first wind

So today's a day where I sit waiting for my first wind. Not even a breeze! I have another flare of my fibromyalgia and I am so tired breathing is an effort!

I have been pacing myself to get the essentials done today. Mostly catching up on dishes and a couple of loads of washing.

The weather is fantastic and it would be wonderful to dry the clothes outside, but alas, my spoons dictated that I chuck them in the dryer.

This is my to do list for today:

1. Washing 
2. Folding and putting away the clothes
3. Finishing washing the dishes.
4. Cook curried sausages with mashed potato and veggies for tea

Needing to take a bath but it will have to wait until tomorrow. I am dreaming of bed while waiting for my first wind.

Things are getting done

So we are staying home and doing some jobs around the house that I have been wanting to get done for a while now.

My sister gave me this picture of the seaside with ladies in crinoline dresses enjoying the beach. It is really pretty in real life and looks wonderful with my pale blue curtains and pink and mint green minkie blankets and blue doona cover. I hope it's not too girly for poor Chris. I will post a pic of the complete room later.

I am very weary today but have determined to follow Wednesday's List regardless. I really want to keep up with my housework, so I will be pacing myself. 

Although today is Thursday, I have followed that list yesterday as I had a doctors' appointment and was really tired after that.

On today's list of to do's:

1. Do a load of washing and put it away
2. Hang some pictures in the lounge room
3. Change our sheets
4. Cook some chicken kievs for dinner
5. Wash the dinner dishes from last night.

I trust you are all keeping well and staying at home where possible. It's not all bad and perhaps like us, you are finding that things are getting done..