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! 

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!

It's a double whammy!

I am flat out resting today, trying to cope with the pain of a flare of fibromyalgia and polymyalgia rheumatica.

Honestly, it's hard enough coping with fibromyalgia flares, let alone PMR as well. And to make it more difficult it's Easter and there are no doctors available, and it doesn't seem to be urgent enough for ER.

Usually PMR fizzles out after about 5 years, but I have had it on and off for 20, often at first mistaken for fibromyalgia. 

My doctor told me that often it leaves the sufferer with neck and shoulder arthritis, but rarely, it can last a lifetime. Lucky me.

The treatment for PMR is prednisolone but I am wondering if I should take it without my doctor's permission. I have to remember that it elevates my sugars and they have  already gotten higher without it.

After a miserable night's sleep, I took a Tramadol which has helped a little. I took paracetamol as a baseline.. I will most likely have a nana nap soon.

The fibromyalgia is making my knees and back ache and where that lies off, my neck and shoulders and jaw with pounding headache take over thanks to the polymyaglia...

All in all, I am a mess and tired of feeling like this... PMR and fibro are bad enough separately, but this is the worst of all- a double whammy! 

The power of a nana nap

 

So over my last 25 years of chronic illness my level of energy is often very low. Heart failure, pulmonary hyertension and particularly fibromyalgia rob me of my spoons and dictate the need to sleep.

I have found that it is best value for me to take a short nap- a nana nap of no more than 40 minutes. If I sleep for longer than that, I find I can't sleep soundly at night.

First clue for a night of non restorative sleep for me is the inability to go to bed at a reasonable hour- for me it is 11pm. I simply feel too stimulated to relax and go to bed. 

Being a night owl for me means pain tomorrow. I simply can't function properly if I have gone to bed late, even if I stay in bed till later.

Apparently this has something to do with our circadian rhythm and my rheumatologist told me that every hour we sleep before midnight equates to two more than after midnight...

I have been purposely taking a break in a short nana nap for a few weeks now and I find I am waking up feeling strong enough to do some chore or another that I haven't been able to get to...

If I go to bed and sleep for a few hours, which is easy to do when one is chronically fatigued, I often find I wake up feeling disoriented, giddy and generally out of sorts.

If I sleep a lot during the day, I obviously can't sleep properly during the night. So by having a planned nana nap as opposed to a long sleep, I find better value and easier deeper sleep at night.

In order to influence my body into having a nap as opposed to a full long sleep in the day, I now lay on the couch. Chris rubs my swollen feet and very soon I drift off to sleep. And for some reason, my body only sleeps for about 40 minutes. If I actually go to bed, I will sleep up to 3 hours...

By planned sleep routines, I can release more of the power of a nana nap.

Xena's still upset with me!

For those of you who follow my sister blog, Morning Cuppas With Glenys, you may recall that recently I had to rescue a sparrow from our little white cat, Xena's mouth.

Although it's been 2 weeks since that rescue, my relationship with her has gone south! She ignores me. When she lays on the floor in front of me, she keeps her back to me and if she walks past me on my computer desk, she presents her bottom to me as she passes me to drink from her drinking fountain on my desk.

I can't work out why she's so upset and why her grudge has continued for so long. She is well fed so the bird affair must have been for sheer pleasure of the hunt. And although the hunt was successful, she didn't get to enjoy the fruit of it...

Maybe she was trying  to please me by bringing this poor bird home like the time she brought home a dead mouse and laid it on my back doorstep.. perhaps my rejection has hurt her feline feelings...

With a very nasty fibromyalgia flare and extreme fatigue, I have been having frequent nana naps and she does still come into bed with me...

But the feeling of companionship is lacking now and I want it back. But how does one say sorry to a cat?

I fear that our relationship is permanently damaged and I am fully expecting her to put out her tongue at me to air her feelings..

I am checking her little claws as she sometimes accidentally scratches me in the night when she's curled up beside me. 

Come to think of it, maybe it's not accidental- maybe she's still fuming... I will never know. What I do know though, is that Xena's still upset with me! 

Ordinary is good!

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 couple of loads 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 an ordinary 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 day that's ordinary and good! 

Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.

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.

 

More than just a place to sleep

Recently someone asked why do we make our bed? I gave it some thought as I have recently been making my own bed daily, in spite of regularly going back into it for a nana nap. Here's a few thoughts on why I use my precious spoons to make my bed.

Physically its more comfortable to sleep in. 

Psychologically its more inviting.

It makes the room visually more esthetically pleasing.

The bed's the centrepiece of the room like in a painting. 

It gives the illusion of order and calm.

It uplifts my spirits when I come into my bedroom.

With fibromyalgia, angina and back problems, I make mine but often get back in it. So I remake it.

When I make it, I don't get on my knees as they are broken and I do not do hospital bed mitred corners. I pull up my top sheet, then turn back the minky blankets. With arthritic hands, the only tucks I do are at the bottom of the bed to secure the bedding...

But, being honest, I sometimes let it go when I have a fibro flare- being satified that the sheets and bedding is clean. But the majority of times, my beds are made. 

Beds are more comfortable made up or at least straightened and are more than a place to sleep.

Failing fast

You may have noticed I haven't been posting much lately. Fibromyalgia, heart disease, high blood pressure and now boils have taken over my body all at once.

My body is failing me and the fatigue is not only sapping my strength but my mental faculties. It is hard to formulate a sentence these days.

I have been to the doctor. My blood pressure meds have been increased (200/86) and that in itself makes me tired.

These days it takes me all my time to look after Chris and my home. Forget socialising.

I am on the strongest oral antibiotics, taking 9 a day. They have brought the boil on my spine to a head. I am waiting for it to pop itself, rather than try to squeeze it. Though I think I would die from the pain if we tried to do that. The boil is quite large.

I pace myself to try to eke out my meagre spoons but I find I just have to have a nana nap in the day to have enough spoons to cook dinner.

I am praying that I feel better for Christmas as we are having family here for lunch Christmas Day. Most certainly I will have to be stronger than what I am now. My body is failing fast.

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.

Of rosy cheeks and apple roses

This weekend we had our 10 year old granddaughter, Taylah come and stay with us. We had a lot of fun and part of that fun was making apple roses.

My fibromyalgia was really bad and I explained my need for a nana nap by relating the meaning behind the spoons. She totally understood and in fact told me to go have a nap and she would call me in half an hour.

True to her word, she woke me in half an hour, but my body whimpered and said, "No way!" However, because we had made a "pinky promise" and I wanted to keep it, I dragged myself out of bed.

We stayed up until 11 on Saturday night because it wasn't a school night, and we slept until midday. I couldn't believe that I had slept that long. Tay must have needed it too.

We baked  apple roses and kept some aside for when her mum and sister came to pick her up. It was the first time they had seen our new house. I rarely see them these days. 

I was happy that we had made more memories when I said goodbye to them and so was my little Tay, looking lovely and rosy cheeked, clutching a few more apple roses for them to enjoy later.

Between my nana naps!

 

Today is Saturday morning here. I have had a busy week with doctors appointments and physio for my daughter who is doing really well. 

My son had a possible cancer in his bowels, but the first test was a false alarm and to be honest, it made me anxious. I didn't realise how anxious until he was cleared. 

This son was born with a forceps injury to his eye- it looks normal but he has very little sight in it. He has developed a pterygium or sun damage in his good eye and has surgery next Friday to remove the growth because it is growing across his eye and may interfere with his vision. I will be glad when it's done and his eye has recovered. 

All this has given me the Mother of all Flares. My fibromyalgia is killing me at the moment and I am taking frequent naps to cope with it. I have a few housework chores to do and some folding up of clean washing. I will do it- in between my nana naps! 

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.

It's a pain in the neck

 

Lately I have been trying to keep off the computer. I have had a horrid fibromyalgia flare and I suspect along with neck and shoulder pain, I have also got TMJ and polymyalgia rheumatica back as well.

We  recently sold our GMC Sierra ute and with no more vehicles needing a driveway to park on, we have turned our attention to finding another rented home. It has proven to be a nightmare.

There are not many affordable homes to rent and we find we are vying with up to 20 different people at a viewing, all hoping to get the same property. It is terribly stressful.

I think the stress has exacerbated my fibromyalgia. I have been clenching my jaw and this has seen my TMJ return. Without a blood test to check ESR creatines and so on, I can't say that my PMR has returned, but judging from the pain and inability to raise my arms, I would not be surprised.

I have done 5 loads of washing and dryed it in the dryer as it's too painful to hang it outside. I have run the dishwasher and been to the chemist to pick up my Januvia for my diabetes. Just that small bit of work has exhausted me. My spoons have left the building.

Lately I have been thinking it isn't worth moving, but the possums in the roof wake me up with their thumpings and scratchings and the cold weather has meant that central heating is calling my name and beckoning me to a newer more modern abode.

Just typing to you has stirred up all my sore muscles, and it's traveled down my arm. So I will be taking some paracetamol Osteo soon and maybe I'll be having a nana nap.

Fibromyalgia, PMR or plain arthritis makes for a bad day by any name. Whatever ails me, it boils down to the fact that today, it's a pain in the neck. 

 

We just have to embrace it

We have been looking for another house closer to family. We have applied for one yesterday and had a phone call from the real estate this morning which sounded positive. 

Our fiver got to South Australia to its new owner and they rang us to tell us how pleased they were with it. So that's good. 

We are taking our GMC Sierra to the mechanic for a good overhaul Monday and then we will decide what we will do with it. Over here they are seen as a luxury ute and we think a young buck would love it. That's what we are hoping. 

My twin and son and granddaughter continue to recover from Covid but are still very much under the weather with it. 

I am convinced that our prayers have helped keep my twin. She's so many serious health issues such as lupus and I was afraid for her. 

I have done a load of washing, cleaned my kitchen and am about to make some lunch.  I have a flare of fibromyalgia again and my spoons are nearly all gone.  I will be  taking a nana nap soon.

With an imminent move, I am not looking forward to the energy output, however I am looking forward to being nearer family.

I will miss the birds and our feral cat who is gradually becoming less timid as we feed him. We have named him Teddy Bear as his face is surrounded by bushy fur and he is gingery brown and looks like a teddy.

But I know in  life that one rarely gets everything one wants and so we have weighed up staying or moving. We have decided that we want to be closer to family, particularly our daughter who has had leukaemia.

With a bird bath/feeder and garden swing to take with us, we will continue to feed the birds as we watch from the swing in the garden.

It's true what they say: nothing is sure except death and taxes. Life is full of change. We just have to embrace it.

The only nice thing about it

So we went to the doctor yesterday to get our results from blood tests taken a few days ago. My blood pressure was 140/90 which was slightly better than last time, but still high.

He asked was anything bothering me and I had to tell him I am worried about Chris. Both of us have heart failure, high blood pressure, diabetes and cellulitis plus I have fibromyalgia. 

We both have pitting oedema on our feet and legs and the fatigue that comes from obesity and feeling sick. Dressing and showering is shared in that we help each other and because of exhaustion from showering, we shower every second day, taking opposite days. That way, we can help each other.

Our love language is touch in the form of massaging each other's feet and legs and our speech revolves around spoons and how much sugar is in everything that passes our lips.

We rarely leave home any more except for the doctor or chemist and our rubbish bins go out more than us. The highlight of our day is to discover we don't have any appointments or need a blood test. We are extremely relieved to know we can just stay home and have a PJ day.

It is unusual to call on us and not find at least one of us having a nana nap, particularly if we haven't slept well the night before.

When massaging Chris's feet or watching him sleep upright so that he doesn't feel like he's drowning in his fluid, I become anxious about how ill he looks and I fret that I will lose him.

I can't bear to think of that and when I do, I have to give it to the LORD in prayer and trust that He will grant us more time together.

All this angst does nothing to alleviate my fibromyalgia pain or help me get over a flare and I find myself taking mild pain relief every 6 hours. As the doctor advised.

Our home is able to be company ready in half an hour as it is basically tidy all the time. True, there may be slippers in the lounge or a cup on the table, but this can easily be fixed. I just close our bedroom doors to hide the permanently clean but unmade beds.

We love our home as we feel it nurtures us and even though we only may be gone a few hours when we have to go out, we find we are really looking forward to coming home again.

When we were engaged, we agreed that it would be nice to grow old together and we have. Twenty-five years later, it isn't so nice. But thank goodness we have each other and that's the only nice thing about it.

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. 

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.

Oh no, no ho ho!

So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho.