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.

 

Searching for some spoons

                                          

So Chris wasn't feeling well, so we didn't get out yesterday. I ordered $30 worth of groceries through Woolworths online. We have to pick them up at 1pm. It's so handy to shop like that. After that I need to get some prescriptions made up and go to the Post Office.

I managed to do all those dishes yesterday, with just last night's pots and pans to wash today. Tonight I will shower. If I do it this morning, I will run out of spoons and won't make it for the errands later.

It's hard searching for spoons and finding none, knowing that you have to do certain errands like shopping and getting medicines. And the tricky thing is when you find some, they disappear before you can put them to good use, and you find you need to take a nana nap just to accomplish it.

I know with talking to other Fibromites that I am not alone, as having no spoons seems to be a typical symptom of fibromyalgia. So for the next few hours before I pick up the groceries, you know where I'll be: searching for some spoons.

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.

It's a pain!

 

So the day has started off without any appreciable spoons. However, I have purposed to do some chores in the house regardless. Simply because they have to be done.

With the last two days slack on housework, there are dishes and washing and some other chores that are shouting to be done.

My sugars are still 10.4 this morning in spite of taking the new diabetes medications for a week. So I accept that I am never going to feel really well. Fibromyalgia and angina coupled with back pain also seem to do that. 

So I am going to just concentrate today on the most crucial homemaking tasks: having clean dishes and cups and some clean clothes and towels.. No lists today, this is all I can manage.

So today's list of to do's are:

1. Soak and wash dishes and put away after air drying
2. Catch up on the washing and put it away after the dryer has finished
3. Cook some lamb stew in the slow cooker for dinner

Granted it's not much to do, but my body feels like it's trying to climb Mt Everest. But enough procrastination: I must push on. No fairy godmother is coming- I'm it!  

It's mundane. It's frustrating. It's tiring! But it is what it is!  It's chronic illness! And it's a pain!

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.

I think I could sleep on the freeway.

We visited the doctor today.  I have extremely high blood pressure which the doctor feels is due to my fibromyalgia pain.  It has flared since the move and I have gone grey overnight.

He is increasing my antidepressants as I am stressed to the max. He believes they may help in my fibro pain. He has not offered anything for pain as yet. 

I feel totally exhausted and I need to help Dianne for the next month as she can't drive.  My spoons are gone before I surface each day.

My exhaustion is such that my legs feel like they can't hold me up. Yet like helping my daughter and looking after my sick husband, there are things that just have to be done.

My grandson walked to our place from school today and found no clean cups for a drink. I told him he will have to wash one out for himself as I have been so unwell that I haven't been able to stack the dishwasher.  

He selected a picnic cup instead of washing one and then asked to be driven home. I felt guilty that my kitchen is a mess but Chris has fluid build up in his lungs due to living with heart failure and hasn't been able to help.

As a fellow counter of spoons, he has to save them for driving Dianne to doctors' appointments and physio, so I do not ask that he helps with the housework.

My extra antidepressants are kicking in and I am feeling tired as we speak. I must straighten my bed first as it is very uncomfortable as it is. I need a good night's sleep.

It is true that you sleep better in a tidy bed. The way I feel right now, I think I could sleep on the freeway. 

I am too tired to shout!

Today is Monday morning. I have to do some washing and restack the dishwasher. I have run Sadie the Roomba and am about to do bloods, meds and breakfast. 

Later on at 11 a man is coming to do some flatpacks of furniture for us. I am hopeless at this and Chris can't do it anymore. It's a coffee table and TV lowline unit. It's $40 an hour but we had to factor that in when we bought them. It is what it is! 

At 2.30 we have to pick Dianne up and take her to a doctor's appointment. Then I have to go to the chemist and get her meds made up. 

It's supposed to rain for the next 10 days and the rain has been consistently heavy and constant. I think we are going to need an ark soon.  It is making my fibromyalgia worse, and I am pushing myself to get Di to doctors and physio. 

I will neverthless be busy with doctors and physio for the rest of the week and possibly next two weeks or more. I am glad Di's knee has been done though. It's all over bar the shouting! With no spoons at all, I am too tired to shout! 

Or should I say, how little!

It's Wednesday morning here. I have cleaned my kitchen and taken meat out to thaw for dinner. I am going to cook pork chops with mashed potato and greens with gravy.

My sister's son came to visit her for Mother's Day. He brought some homemade scones with cream and jam for her and my nephew to enjoy. They share a house together.

During the visit, he shared that his own son is at home with Covid. Yesterday, he rings and says he's now positive too. With lupus, fibro and other diseases, and with my son with breathing problems, they are worried that they will catch it too. They aren't vaxxed. So far my son and my sister are OK but are getting some RAT's this afternoon. 

Chris is sleeping sitting up on the couch. He really needs to go back to the doctor as he's feeling like he's drowning in fluid. I have been encouraging him to go, but he's very stubborn. Consequently, he doesn't get much sleep and can't lie down. 

It's hard looking after him because of this fear of doctors and hospitals. It's not like he's a child and you just take them....

There's not much else planned for today. My fibromyalgia pain is bad. I'm so glad at this stage of my life that I can decide how much I will do each day. Or should I say, how little!  

Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.

This too will pass

 

It's been nearly a week without spoons. I have absolutely no energy to speak of and have just been focussing on keeping the clothes washed, kitchen clean and cooking.

I suppose it's my fault. With some recent spoons, I probably overdid it and hence the Flare of Flares. It's sort of predictable with fibromyalgia. But I was hoping to break out of the pain/fatigue cycle. I haven't.

 

The doctor has become concerned about my blood pressure being high 160/90 and has been trying to get me to give myself a once a week injection of a drug that's supposed to help me lose weight as well as keep the sugars low. I don't want it.

My feelings are that once you inject something, you have to put up with any side-effects for another week, unlike oral tablets that you have some control over. You can stop taking them: not so with injections. Yes, you can stop using them but the chemical is in your system for a week.

I am sick enough with the antibiotics I am taking for suspected cellulitis in my leg. They are very rugged and have given me thrush as well. But I need to finish the course to heal my leg.

So because I have an infection, I am listening to my body and taking a nana nap if I need it. And I don't feel guilty for napping.

I am trying to keep upbeat and not stress too much. It's hard for me as Chris is suffering with his heart failure as well.

I know better days must come and that's why I chose the picture above. With prayer and leaning on the LORD, this phrase often comes to mind:  "this too will pass" and it will- eventually. 

When you got no spoons everyone has to help!

So my respite from pain has come to a sorry end. I have been hit with the Mother of all Flares. Just breathing is too much effort and sleep is brief and light. The truck that hit me didn't even stop. 

I have been pacing myself majoring on keeping the dishes and the washing up to date. It hasn't been too difficult really as I have planned in advance for the inevitable fibromyalgia flare that comes after a respite.

Most people who don't suffer from fibromyalgia would call me a pessimist, but we Fibromites know how fickle our body is and how greedy it is for spoons. We never can have enough spoons to say we are energetic. Spoons are energy measures

It's enough to have enough spoons to take a shower some days, and we usually suffer after for it in spite of the pride in ourselves that we made the effort and did it..and the luxurious feeling that being dainty brings.

No, we are realists who accept that our bodies are treacherous. They lure us into a false sense of joy in a seeming abundance of spoons- well enough spoons to make us believe that we can change the sheets, bake a cake, vacuum the lounge room or go shopping. In real life shopping, not just on the computer.

Knowing better really, but delirious in the freedom that a few spoons brings, our joy knows no bounds and we actually dare to live like we did before Fibro claimed our lives, bodies and joy. And we keep living in the moment full of joie de vie until the joy and spoons are gone.  

No, I knew from 20 years experience that my respite from pain would be short-lived and it was.  But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.

I had my handmaiden, aka dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.

In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.

He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help! 

My new maid servant

 

So as you probably know, I have had trouble keeping up to date with my dishes. No matter how good my intentions were, by the end of the day I had a sinkful of dishes waiting to be done.

Coming in to the kitchen first thing in the morning, I was always down as soon as I saw them waiting for me to find some spoons to attend to them. I know those who suffer from fibromyalgia like I do, would understand.

As we live in a rented house and we cannot change the plumbing to accommodate a dishwasher, I felt it was a never ending cycle that I couldn't break.

One day I was looking at the price of mobile dishwashers and I noticed that they make a dishwasher that you can park on your kitchen benchtop and I knew I wanted one. So we ordered one online. It's a Devanti.

It came yesterday and I am so pleased with it. It has hoses that attach to the taps in the kitchen sink. It takes a 8 place dinner service and does as good a job as the inbuilt ones. An added bonus is that I don't have to bend to stack and unstack it.

So not only does this dishwasher solve the problem of dishes piling up and no spoons, but saves my back from trying to bend. Ankylosing spondylitis is no joke. 

Anyway, I am overjoyed that the dishes are no longer my nemesis thanks to my new maid servant.

I am glad I have done this!

So I have been busy cooking those meals and freezing them as I mentioned in my last post. It has been quite an effort for me, but I think it's paid off.

I managed to get 30 meals cooked and in the freezer. I ran out of containers and room, so I had to place the food in plastic ziploc bags. No matter, because they will taste the same.

Last night I got a spaghetti bolognaise out, emptied it nicely thawed, onto a plate and nuked it for 3 minutes. It was great! I added shaved parmesan cheese and some salad and it was delicious! 

Yesterday my younger son turned 45 and we went to his place to wish him happy birthday. It's a 2 hour trip each way, so by the time we got home I was too exhausted to cook. So this came in handy. 

I have quite a few dishes to do today and I want to clean my kitchen well, so if I have enough spoons left, I want to cook four meals of chow mein with rice.

Sitting here talking to you, I feel like I am falling asleep and my muscles are aching badly. So I fear maybe another fibromyalgia flare is coming to pay me a visit. Just another reason I am glad I have done this! 

My eternal quest

 

I slept well last night but still had no spoons to speak of. After a morning of minimal chores, I sat down next to Chris to watch the birds coming to eat the food I had thrown out for them.

Because of my heart failure, my feet and legs are up like balloons and Chris rubs them for me to help move the fluid up towards my heart. With neuropathy from my diabetes, he rubs my toes to move the blood around and help the circulation. It is heavenly.

Suddenly, I heard sonorous sounds that woke me up: to my horror, it was me snoring! Chris just laughed when he saw that I had woken myself up and suggested I try to get some more sleep before lunch. But the moment was lost and I got up and made some grilled toasties for our lunch.

I soaked the few dishes in hot soapy water, removed a small leg of lamb from the freezer, did some computer work and fell asleep at the screen. So I went for a nana nap as that's the only thing I can do with a fibromyalgia flare.

After I napped, I put the lamb on to roast and completed the dishwashing. We ate dinner and Chris cleared up the kitchen. We took our night medications and Chris watched TV while I blogged.

And so, here I sit, talking to you and longing for my bed again. I had no joy today finding some spoons and it may well be that tomorrow I will be pursuing my search again- it is my eternal quest.

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 Kingfishers 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 onto the decking 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. 

They're silently waiting for me

Anyone who follows this blog knows that I struggle with washing the dishes. It is a battle that is fought and lost on two fronts: emotional and physical.

The emotional part is owing to the fact that I don't have a dishwasher and the dishes multiply like rabbits and are a continual eye sore on the side of the sink. 

In spite of cleaning them up and being rewarded by not only an empty sink and benches and of course, clean dishes- I find the complete futility of feeling done with them is disheartening.

A terrible procrastinator, I promise myself that I will keep up with them, but illness laughs as it assails me with yet another flare, and they remain on the bench mocking me for being  defeated yet again.

So here comes the other side of this domestic dilemma: being completely out of spoons and suffering from broken knees and collapsing spine. I simply cannot stand.

And of course that horridly wicked ruler, Fibromyalgia ensures that I am in an almost constant flare, and it is the cherry on the top of my cocktail of pain. So not only is my physical health attacked, but also my mental health. It's depressing.

I know I could ask Chris for help, but he has heart failure and battles his own health issues. It has always been me who washes the dishes, and then he will usually come and dry them and put them away. I am grateful.

Until I can gather some spoons I will sit and wait for my Tramadol to work. I plan to clear the dishes up, cook some steak and vegetables for dinner tonight and rest. That's the plan. Meanwhile, they're silently waiting for me.

Something to remember if we move.

Yesterday's house inspection went well. She thanked us for keeping the house nice and said the owners will be pleased. I am glad to hear that because Chris wants to move closer into the bigger towns when/if we sell the fifth wheeler. I want to move closer to my children if I have to move. I am not keen on moving again. Anyway, we will have a good record as tenants if we have to move.

I have arms that feel like they're made of lead today. Fibromyalgia. I did our online shop again and it's due to be delivered this afternoon. It's the easiest way for us to do it these days. I have some dishes to wash from lunch and breakfast and I will probably have a nana nap to be able to cope with cooking diner and putting the shopping away.

Lately I've been spending quite a bit of time in bed. It usually doesn't get made much for that reason. But with it looking nice yesterday for the inspection, I decided to take a snap of it. Something to remember if we move.

My new wheels

                                               

So if you have read on my other blog, I am now wheel-chair bound. I am relieved that I have an easier method of transportation and that it will be easier for Chris to push, but I am also sad that my life has come to this.

So, the MRI results are in. I have a meniscus tear, fabella, torn posterior crucius ligament, bursitis and osteo arthritis behind the patella. It needs surgery as it does not repair itself.

I am to see an orthopaedic surgeon and meanwhile I must rest the knee and use pain killers. 

We have bought a shower chair and a wheelchair. I have had Chris push me on the seat of my walker, but it is a big strain on his heart and I worry about him. 

It is difficult to focus enough to write at the moment and I spend a lot of time on the couch aka the beach, or in bed with my electric blanket.

I am just able to stand enough to wash some dishes, cook a meal and stack the washer and dryer. Chris helps sometimes and has been my legs.

I am making use of the slow cooker a lot, cooking the meals as I am able to stand.

As with all new health issues, I am trying to come to terms with this "new normal" and the constant struggles with fibromyalgia are now "normal" and this new challenge is calling for all my ability to accept my new lot in chronic illness.

I am disheartened that both my knees have now given way (I have a torn meniscus in my other knee), and am trying to feel grateful that I could afford a wheelchair. Thank goodness for afterpay.

I am trying to be thankful for my new wheels, and I am also trying to give this new situation over to the LORD. I guess it's all a part of grieving what I have lost and accepting it, and not giving way to self-pity. It's hard.

However romantic a picture I can find really doesn't cut it for me as I struggle to accept that I am now wheelchair bound, and instead of a new car, a wheelchair is my new wheels.

© Glenys Robyn Hicks

My flesh and my heart fail; But God is the strength of my heart and my portion forever. Psalm 76:26