Welcome! Come in and lie down!

                                                    

So yesterday we  had plans to visit my son and my twin sister who share a house together..I had been looking forward to it for a while.

When it was time to rise, I didn't feel well enough to go and it was only because I had to deliver some medications that I made the effort to leave the house. My fibromyalgia and polymyalgia were both flaring and my body was missing the Prednisolone...

On our way there, I kept falling asleep, only waking up when the seatbelt garrotted me... I felt weak and disoriented.

By the time we arrived after a 40 minute drive, I couldn't focus and after ordering McDonalds online for lunch, I fell asleep at my sister's computer.

We ate lunch and I still felt like my head was full of cotton wool and my muscles especially in the neck and shoulders were so sore I nearly cried.

My twin and son who has chronic pain issues from a work injury and fibromyalgia, told me to go and lie down in her bed. My sister joined me and my son went to his room, leaving Chris to watch TV and/or sleep.

I don't know how long I was asleep, but Chris came in and asked to go as he was feeling unwell with his high sugars and wanted to go while it was still daylight.

We quietly let ourselves out and took the scenic easy route home...and I slept on and off throughout the journey...

Next week my twin and I will be 70 and they are planning to come to our place. Although I am looking forward to seeing them, I know it will be a shortlived visit.  

Chronic illness in the form of fibromyalgia, polymyalgia and lupus for her, dictate our lives somewhat... in spite of the best intentions, spoons dictate rigidly and always win.

We will eat, they will leave to go home to sleep. It looks very like I will be saying, "Welcome! Come in and lie down!" 

    

             

It still is that for me!

 

Yep, it's still Safeway for me!  With fibromyalgia brain fog and old age, tell me the new name of a place or person I knew, and it is lost forever... they will forever be the name I first called them!

So I had a phone consult today and the doctor wants to wean me off prednisolone after only four days.. it hasnt really done it's job quite yet, so I am going to spin it out for a few more days ...

Today I have washed some minkie blankets off our beds, ran and then emptied the Roombas, cleaned the toilets and ordered online medicines and groceries.I  did some rounds of crochet in between tasks..

Chris loves bangers and mash so that's what I will be doing for tea tonight..

The Prednisolone fills me with fake energy, but I don't care... I will milk this Polymyalgia rheumatica situation for all it's worth!  I know I won't be long on the meds so I may as well turn the antsy feelings for my good...and get the benefit of some pseudo spoons!  

For those who don't know... in Australia Safeway Supermarkets took on the name Woolworths many moons ago: but as I said, it still is that for me!

A spoon is a spoon!

 

So my polymyalgia rheumatica has kicked in again, and coupled with a fibromyalgia flare, the pain is just excruciating.

I have decided the pain warrants some Prednisolone so I took 25mg of it these last two mornings. It makes me feel a bit antsy but I can now bend my neck, lift my arms to brush my hair, and the pain around my temples and headache has gone, along with the TMJ.

It is risky taking Prenisolone, but I had to weigh up the pros and cons and decided that I simply couldnt bear the pain any longer. 

A happy consequence of it is the fake energy has made me channel it into housekeeping and my house hasnt looked better! 

Today I have run the Roombas, washed the clothes and cleaned my kitchen. I am going to do sausages in the slow cooker for dinner tonight.

The steroids are elevating my blood sugars as I am diabetic. It's making me feel drowsy. I can see a nana nap in my future if the Pred will allow me to sleep.

I really dont care where I get my energy from these days: fake energy from steroids is good. After all, a spoon is a spoon!

She's a Diva!

 

I have changed my blood pressure tablets around and take the stronger of the two Physiotens at night and it has helped me sleep better again.

Consequently, I awoke with a few more spoons this morning and I paced myself and managed to catch up on some home chores I was behind in.

It's now evening and I am winding down for the day. 

I managed to fold and put away a weeks' worth of washing which was weighing on my mind. I always meant to get around to it, but fibromyalgia reduced spoons saw to it that I didn't.

Although spent and exhausted at the moment, I have a feeling of accomplishment. I like it. So tomorrow, God willing, I am going to iron my few articles such as our pillowcases and sort out my medicines.

It's going to be cold tonight, so I have already put our electric blankets on. Our cat, Xena has found the warm patch already and is asleep on my bed. It will be interesting  to see if she objects to me slipping in beside her when I retire tonight. She actually tells Chris no when he comes in to say goodnight.

They say cats aren't very expressive, but Xena is! She's also very bossy and fussy. We love her to bits, even if she's a diva! 

The spirit is willing

 

So I decided to take a bath today. No mean feat when one is chronically ill or disabled. It turned out to be a big mistake.

Chris helped me get into the bath as it's pretty high. I no longer have my bath lift  so that made things a bit harder again.

It was so difficult to make my knees bend enough to sit down in the water, but when I finally was in, the water was so soothing. I lay there for about 40 minutes, just luxuriating in it.

The loofah did a marvellous job of exfoliating my body and once again, I was so glad to actually be able to bathe.  Then came the hardest part: getting out.

I tried every way to get out without kneeling on my sore knees, but in the end, I had to. There was no other way. It hurt like crazy!

Today my knees are aching and it is with sadness that I realised-(not for the first time) that it will have to be showers from now on for me.

I have no painkillers here so I am just taking paracetamol... which is pretty much useless for strong pain.

So I have made a short list today for chores I want to do.

I have put away the online groceries that came this morning.

I have done a load of washing that is in the dryer.

I have a slow crocker full of pork sweet and sour rice for dinner tonight.

After all these years of chronic illness, mainly fibromyalgia and shuermanns disease, I think I have worked out how many spoons I can save during a bad day.

As it is written," The spirit is willing, but the flesh is weak!" Matthew 26:41  Indeed it is! 

No spoons required

So yesterday was a really good day. In spite of my fibromyalgia flaring and angina. But it's because of those things that today has been so good.

My diary showed a doctors' appointment to attend, then the chemist for scripts and then the inevitable grocery shop for the week. A full day for a chronically ill person.

I thought it through and decided to ring the clinic and change a face to face consult with a phone one. Then I rang the chemist to advise them that the script I owed them for some blood pressure tablets would be coming in the afternoon. Then I arranged the medicines to be delivered to me.

Then grabbing a cup of tea, I did my online shop and arranged delivery of it for tomorrow. And I played Candy Crush until the doctor rang me.

He arranged for the escripts to be sent directly to our chemist. I made another cup of tea as the doorbell rang- the girl with our medicines delivered them very promptly.

Cooking a simple meal, I found I had energy to work on my crochet project until bedtime. I had plenty of energy as all the errands had been done with no spoons required.

I am no longer a bunny!

 

So Easter has come and gone and so have all my spoons! I have been under the weather all over Easter and have a constant fibromyalgia flare, coupled with spinal pain.

With moving the homemaking help for the elderly stopped and it would take a long time to get it all arranged. We have decided to enlist a woman to clean for us fortnightly again.

This lady is very efficient and friendly as well and although we enlisted her for once a month cleaning, the truth is I need her fortnightly. I can maintain our home in between her visits, but with once a month, the house is needing a more thorough clean and therefore took more than the two hours I hired her to clean.

As always, I hate needing to have help these days, and Chris is too unwell to help me. It is what it is..

You would think that with having back pain for forty years and fibromyaglia and angina for twenty, that I would be more gracious to myself. I should be accepting my lot, but being a woman, I still find my perceived worth as a homemaker is dictated by how fast I spin my wheel without help.

So with my 70th birthday here in a few weeks, I am just going to have to accept my handicaps and be merciful to myself.

I should be glad that I have a husband who agrees to hiring help. A lot of women don't. So I will just stop the pity party and enjoy this season where we can afford her...

And also, when she comes, I am not going to clean the house before she comes... I am a  perfectionist, but no longer... where housework is concerned, I will get the help I need. I'm no longer a bunny!

© Glenys Robyn Hicks

God is my strength and power: and he maketh my way perfect. 2 Samuel 22:33

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.

Worth every cent!

 

I have enjoyed using my Roomba robotic vacuum so much that I have bought another robotic vacuum that also mops the floors.

Our home has lots of tiles on the floor and it takes a good deal of spoons to keep them clean. These two robotic vacuums saves me on energy and pain.

There's been little energy and a lot of pain these last few weeks. My blood pressure is still high even with me resting more. It's a bit of a puzzle really as emotionally I am good-or as good as someone with constant fibromyalgia pain can be. So I am not stressed.

I am enjoying our new home and it is finally decorated and things unpacked. I have also been decluttering and have given away quite a few things that I found were only taking up space without bringing me joy.

Anyway, I highly recommend all Sacrificial Home Keepers get a robotic vacuum- preferably one that mops as well as vacuums. They are coming down in price but I assure you, they are worth every cent!

I am beyond tired!

 

After a good day yesterday, I ended up flat on my back. Actually that is in bed. My doctor said my BP was too high at 187/87 and he put me on more meds. I planned to do some organising of my wardrobe but it was not to be.

Half an hour after taking my BP medication, I found I couldn't keep my eyes open, so I went to bed. Woke up a couple of hours later just in time to cook dinner. Dinner wasn't very exciting- a steak sandwich.

Tonight I had to take my usual dose of BP tablets and I am just about to go to bed. It's so frustrating! But with chronic illness, it is what it is!

I have to go back to him in two weeks. He is going to discuss giving me Endep for my fibromyalgia pain.

Unable to sit for long, I have culled a lot of FB groups and deleted my Twitter account. I want to reserve whatever spoons I have to look after Chris and our home. I need to spend more time with him and not on the computer.

This dance with chronic illness has it lead all the way. It steps on your toes and cramps your style. It holds you captive. I just want a break from it. I am beyond tired! 

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.

This new quest

So I am just coming back to life after our move. My fibromyalgia is still there of course and so is my tiredness. I am trying to live with constant angina, but I have a new drive to get my house organised and decluttered.

All our boxes are unpacked and stuff is in its place, but there's a need to sort through that stuff and cull it.

Added to that is the desire to keep our new home nice. So I have my hands full, but no spoons.

I am trying to take control of my home- or rather, keep it controlled, but it's going to be a spasmodic deal. It all depends on spoons.

Like I did at the previous house, I have enlisted the help of a cleaner once a fortnight. She changes our beds, cleans the bathrooms and toilets and vacuums and mops the floors.

It sounds like that would be enough, but it still needs cleaning between visits. Thank goodness for my irobot Roomba.  It does a great job in between and I run it twice a day. We've called it Sadie!

To be honest, even without those jobs that the cleaner does, it. is. more. than. enough!

I am going to post pictures of my journey to claim back my house. Mainly for my own records, but you can join me here if you like.

I am going to try my best on this new quest.

 

Having patience with yourself.

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

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!

For me, it's spoons!

It's Sunday morning here. I have brought in the online groceries and checked them off and put them away. 

I will soon be taking Chris's bloods and doing breakfast. Breakfast will be eggs and bacon and a cup of tea. Lunch will be ham and salad sandwiches. For dinner, I am doing a vegetable intensive beef stew. Fresh fruit for desert.

There's a hamper of clean clothes to fold and then I will be up to date with washing. Later I plan to make some coleslaw, if spoons permit. 

That's about it for today, except for cooking dinner. I don't want to put myself into another fibromyalgia flare or I won't have spoons to help my daughter tomorrow. As I always say: most jugglers juggle balls, for me it's spoons! 

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! 

More spoons to enjoy life.

We have just moved and we are both quite tired still. Although the house is functional, there's still a lot of unpacking to do.

This weekend, two of our grandchildren wanted to come see us and give us their verdict of the new house. Knowing that memories are all we will have once they are grown, we agreed to have them.

Although I am suffering from a bad fibromyalgia flare, I got dressed and stayed up in order to spend time with them.

We cooked lunch together and watched family videos of when they were first born and growing up. It was fun but it was also non taxing to my sore body. 

Today I am expecting a lady to come clean for a couple of hours. She did such a good job of cleaning our old house for our bond return, that I asked her if she would like to do a regular clean for us once a fortnight. She agreed.

With my poor daughter suffering from fibromyalgia as well and now living two minutes away, she also agreed to clean her house after ours each fortnight as well.

Both my daughter and I are finding just cooking, cleaning our kitchen, doing washing, grocery shopping, running errands like going to the chemist, planning finances and feeding our pets is enough of a job. We need some extra help.

There's very little help here for chronically ill people who can't do housework. What little we did get has been stopped since a new government has taken over the reins. So we have to pay privately.

I am grateful that I can save enough each fortnight to afford a cleaner's help. It not only keeps my home clean, but gives me more spoons to enjoy life.