It's all too much

 

So recently I have had chest pain in angina and breathing problems coupled with what I thought was fatigue from an ongoing fibromyalgia flare.

My blood pressure sky rocketed, requiring a visit to a cardiologist who ordered an echocardiogram. My general practitioner told me if the results were bad, he would contact me. And he did.

I got the call last Friday telling me to make an appointment for a phone consult so I ended up speaking to the doctor on Monday. He told me I have heart failure due to Pulmonary Hypertension.

There is no cure for it but there are some treatments. I am already on blood thinners which I will stay on as PH can cause blood clots in the lungs. I already take 7 blood pressure tablets a day.

I often have felt dizzy and this is another symptom of PH and I feel like I can't get enough air in at times. The time will come when I will probably need oxygen at home.

Forget about exercise- I nearly collapse with exhaustion after walking up our long passage to answer the door.

I will know more tomorrow when I see the doctor in person. This is needful because he wants to check out the swelling in my feet, ankles and legs. I suspect I have fluid in my abdomen too. It hurts and is tight like a drum.

I had a blood test yesterday to check on my kidney function and this will be a regular thing.

Lately it's been one thing after another and I am a tad depressed. Prayers would be much appreciated. It's all too much! 

More than 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.

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.

I need him awake and aware

 

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

Taking the pressure down

 

There's no nicer time of the day than the evening. All the angst of fighting pain and battling fatigue with fibromyalgia, diabetes, angina and spinal problems is over for the moment...

Whatever the worry of checking and medicating sugars and blood pressure is has been and gone..it is what it is.

As the sun goes down and the moon rises, there is the hope of a restful sleep and whatever chores were meant to be done are either completed or waiting for tomorrow.

We can rest and wind down, enjoying whatever simple pleasures we have left after the raviges of pain and illness. Whatever helps us unwind and take the pressure down is welcome and wanted..

The drapes are closed, the fire lit, the kettle has recently boiled and a tea tray awaits our attention..a final sip of our favourite beverage accompanied by quiet reflection and conversation.

One knows that the morning will bring its own anxieties that life struggling with chronic illness brings, but for the moment the hope of a restful night's sleep resides in our bosom... hope is what keeps us going.

As we lay at last in our bed awaiting sleep, we can reflect on those things that light the wick in our candle of hope. Those things that have given us comfort and peace throughout the preceding day..they are worth remembering...

Being thankful for the good things in our day helps us get a better sleep and is a way of taking the pressure down...

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.

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!

We have gone mad!

It may seem strange to some, but even in the worst pain, you will find me playing Candy Crush in an effort to distract my mind from the pain.

The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.

As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!

My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today.   He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!  

I  know there have  been many who abused pain-killers but when  basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself,  to get any relief at all. 

With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.

So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for  medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.

Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!

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. 

I need him awake and aware

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

Still the mistress of our home!

Yesterday I came to the realisation that my fibromyalgia is not going to get any better. Nor is my diabetes, hole in the heart, back pain, angina, asthma or torn meniscus. 

My blood sugars are also high, but not as high as Chris's, but it is a warning to me as well. I certainly do not want to go through what Chris is going through with trying to get the right amount of insulin and the horrid symptoms he endures.

My hole in the heart means my right lung is not oxygenating properly and because I need a fourth stent which I have refused (another story), I have constant stable angina. And asthma on exertion.

My blood pressure is high as the pain from my back and torn meniscus in my knee is bad. Finally, with Chris being ill now, my depression is back. I hurt when he is hurting.

Like any Sacrificial Home Keeper, I am trying to keep my home clean and tidy and here I too am failing. I see no end to it...

I was talking to my twin sister yesterday and she said that it is possible to get a bit of subsidised home help through the Australian Government's Age Care plan. So I applied and am going to be assessed tomorrow. I am eligible, as I am now 67 and my husband is 70 in a few weeks and is unable to do housework with me.

I can do some housework if it is waist level: dishes, cooking, washing, dusting. But I cannot even sweep let alone vacuum or wash my floors, as my tendons and muscles scream for mercy with my fibromyalgia and my back joins in sympathy, followed by angina and asthma. So basically I need someone to clean my floors and to change our bed.

As a woman who has been a house keeper since 1969 and brought up five children, it really galls me that I have to admit that I cannot maintain my own home by myself anymore. 

So, I am throwing in the towel.... well, mostly. But I still will be doing meal planning, grocery shopping (online),  cooking, cleaning my kitchen including dishes, bill paying and budgeting, washing, ironing as needed, refilling prescriptions, social planning and gift buying, looking after Xena our cat, and most importantly, looking after Chris's and my health.

In saying I am throwing in the towel, I forgot how much I still will be doing. I guess I will still be the mistress of our home! 

Light at the end of the tunnel

The Victorian Government has lifted some of the Corona Virus restrictions for us. Although Chris and I will be taking it slower than the recommendations, we are glad that there will be a little more freedom for everyone.

My fibromyalgia is badly effected by the stormy conditions we have had in the last few days, and I have not blogged because frankly I have done nothing here at home.

It is so hard to function when you wake up with no spoons. Today, I have managed to get dressed. Not bathed or showered- just dressed.

I will be cooking chicken chow mein for dinner and that's it!

I have experienced a new thing with my fibro: my tendons in my arms feel like they are tearing when I extend my arms. Truly excruciating! Plus I have pain in my sternum which is mimicking heart pain. I find no relief taking my Anginine tablets so I think it is the fibromyalgia.

I hate fibro with a passion: it is as debilitating as the Scheurmann's Disease back pain I endured before it finally fizzled out and my vertebrae recalcified or whatever they do to heal. Ten years in the making, whatever it was. With only a slight curveture and a foot that points inwards.

So, fibromyalia seems to be set to stay as my thorn in the side. But I won't let it snatch my joy away in knowing the virus seems to be controlled. At least with that there's light at the end of the tunnel. 

Feeling nurtured

So as you know, I have been under the weather with my fibromyalgia and angina. No amount of determination and desire can call my spoons into action. I cannot function well at the moment. No matter what.

I have succumbed to false guilt, but after a heart to heart with Chris and some Quiet Time with the LORD, I feel a little better.

Having Chris bring me in some tea this morning and his offer to vacuum today has brought a smile to my face. I feel nurtured when he pitches in to help me.

I will be taking some Paracetamol soon and he has promised to give my feet and legs a massage. He gently massages my swollen ankles upwards towards my heart. It helps my weakened heart, and after I find that I can bend my toes and move my feet again. But usually it just makes me sleep. I am always glad to have a nana nap.

The only thing I am going to do today is make fish and chips in the air fryer. I will serve them with salad for dinner. 

Being a chronically ill wife, I sometimes worry about how Chris feels. It must be tedious for him, but when I mention it, he waves his hand and says it's all part of the job of being a husband... and he sure has me feeling nurtured.

Staying busy

So in the wake of the Corona Virus comes anxiety and uncertainty and I have been finding my adrenaline racing. With listening to too much news, I am inclined to get depressed and so, I am staying busy. Well, as busy as fibromyalgia and spoons allow.

I am finding by keeping busy that my mind slows down and this brings my blood pressure and heart rate down as well. There is less adrenaline pumping through me. And less angina.

My friend, Mrs Sylvia Britton of Christian HomeKeeper is a very gifted writer. She has blessed me so much with writing her Lists for the chronically ill woman. I follow them most days and they have helped me so much for many years now. 

Sylvia graciously allowed me to post her Lists here and on my other blog and I am eternally grateful.

Recently she has written a post which is so very helpful for us concerning coping with isolation and the Corona Virus.  Once again, she has graciously allowed me to share this with you. Thanks again, my friend.

Sylvia's advice is always scriptural and sensible, and I have found a sense of peace since staying busy.

So today I have:

1. Done a load of washing
2. Put it away as well as a load I found in the dryer! :)
3. Cleaned my kitchen
4. Made some Jewish Penicillin 
5. Roasted some chicken drumsticks for dinner
6. Sorted out our medications for the week
7. Watched Episode 7 of The Chosen  very moving... 

Highly recommend watching it.  He is our Hope and I am so grateful to Jesus for His sacrifice, His salvation and His grace to me.

My body is hurting with the fibromyalgia flaring, but I would prefer that to sitting fretting about Rona. 

I really think the answer to anxiety sometimes is staying busy.

Making room for more

So yesterday I did an inventory of our pantry and fridge stock and decided that I really should replenish it and even make room for more.

With us living on the aged pension, we have lived from pay to pay and day to day, but with the CV dictating our lives, we decided to use the $750 grant from the Australian government to stock up on food.

So on my to do list today is:

1. Tidy the fridge and pantry
2. Fold today's washing and put it away
3. Make Shepherd's pie for dinner

I was able to grocery shop online as I am a senior and also disabled with fibro, back and heart problems. One can apply for Priority Assistance and they will deliver your groceries if you provide your Customer registered number from Department of Human Services aka Centrelink.

I had to chuckle when I checked the bottom of the pantry: there's so much cat food there. I think Xena per rata has three times the amount of food as we do. (And still she is fussy)

I better get a wriggle on and sort this pantry out before the food is delivered. I am grateful that I have the means and quite enjoy the feeling of making room for more! 

Hoping for a better tomorrow!

I have relapsed with another flare of fibromyalgia accompanied by angina. The angina is present in my sleep and wakes me up. That is in the few hours of sound sleep that fibro gives me.

I have done nothing today except make Chris dinner. The rest of the time I have been sleeping. Depression has called on me making me feel over this.

And I am so over chronic illness. Not that declaring this achieves anything. I am going back to bed in hope of finding a few hours of comfort when I sleep. 

So goodnight to you all. I am hoping for a better tomorrow for you and for myself! 

Like a beetle on its' back

Today I have woken up tired. Fibromyalgia and angina are vying with back pain to see which is going to be the one to send me back to bed.

So far I have taken my medications, made some toast and tea for our breakfast and thrown some fruit bread out to our delightful birds.

I was planning on following Mondays' List but instead I will be following Thursdays which is a day of rest. God willing, I will be able to do Monday's List tomorrow..

I have a pre cooked slow cooker meal in the freezer for dinner tonight. So no need to cook. I don't like using frozen dinners, but I learned years ago to accept what is and not be a perfectionist...

We are experiencing thunder and rain and I am wondering if that is what is causing my renewed fibro flare, or if it was making the effort to go to church yesterday. Whatever it is, one thing is for sure: today I am as weak as a kitten and as helpless as a beetle on its' back!