Acceptance brings peace and patience

 

Over the past 30 years that I have been chronically ill, I find my tolerance for drama and fighting is almost zero.

It's not that I don't like people, it's just that the more you are surrounded by them, the more involved you become in their problems and their dramas unfolding. These days, I prefer solitude and sharing my life with Chris and our cats.. as for people's dramas etc, I pray for them.

These days, I am so grateful for our home which is a haven to Chris and I.  On the days that I don't have to leave my home, you will find me enjoying the peace of homelife. Our cats, Milo and Xena give us  not only joy, but peace. I love their purring near me. It's particularly soothing.

Throughout the day you will find worship music playing low accompanied by the noise of the kettle as it boils the water for a cup of tea. It's going almost constantly.

Because of lympedema and peripheral neuropathy in my feet, coupled with severe fibromyalgia, Chris will often massage the fluid from my legs and rub my feet which feel like they are burning. He has done this for years and it is so soothing that I will usually be asleep within minutes.

Chronic fatigue coupled with aging has given me extreme sleepiness and I seem to be unable to function properly without a daily nana nap.  I no longer whip myself with false guilt, but have accepted that this is out of my control. It is what it is.

Part of living a peaceful life when chronically ill is to accept that some things will have to go to the wayside, but I try and do as much as spoons allow.

Along with quiet enjoyment of your home, and acceptance comes peace and patience with oneself.. 

When your bed is calling your name.

Over the decades that I have lived with chronic illness, especially heart problems and fibromyalgia, I have found that having a routine helps me keep focussed and feel in control of my home.

I am not saying that I don't ever have days where I cannot rise to the occasion and follow them, but on the days that I have a small amount of spoons and motivation, knowing my priorities helps me know where to start in the overwhelm...

My priorities on days when I have enough energy to make an effort in doing housework, are cooking, dishes and washing. Everything else can wait.

So instead of being a slave to my routines and house, I allow myself to let a lot slide on bad days. I refuse to feel guilty for something I have no control over.

Instead of hating my routines, I have come to welcome them for they give me peace and direction, especially during a fibromyalgia flare with brain fog.

I have learned a lot in the three decades I have been a fibromyalgia sufferer, and I can honestly say that sticking to the basic routines will help you cope with it all. 

If I (however loosely), can follow the basic routines on a bad day, at least we will have been fed and have clean sheets to slip into when fatigue kicks in and our bed is calling our name.

Housework is spiritual

 

As a Clean Freak and author of the e-book secret confessions of a clean freak - I can tell you - it's the results of housecleaning that are spiritual.  A clean home feels better.  Plus, you have the pride in a job well done. It's all positive - calming.

Housework left undone is very negative. A constant reminder of things you haven't done. I feel good when my bathroom walls or my stove is shiny. It makes me feel like I have control. And sometimes, that's all I have control over.

And, like all things spiritual, it takes discipline until it becomes habit. Housecleaning is a breeze once you have it under control and you have a routine. Really! I'm a single mom and I get picked on all the time for being too clean - like I have some disease! Guess I'm just a freak! author unknown.

Well, I wouldn't call this author a freak. I know from my own experience that a messy house makes me feel worse than usual and irritable. The trouble for me with never ending fibromyalgia, is getting the energy to do it. But the results of housework certainly are spiritual!

I have known a Christian woman who was part of our home bible group many years ago. Her place looked like a hurricane had struck it. Ants marched along the floor to dine and pillage her overflowing trash container in the kitchen. There wasn't a clean cup or spoon for after the study's fellowship cuppa.

We all cleaned it up so that the ladies who came would be more comfortable, but by the next week it was just the same. Instinctively, we knew that housework is spiritual and that we would not be able to focus on the Word sitting in filth. Filth is not conducive to worshiping God.

These days I am limited in how much I can clean and it often is a source of dismay to me that I can't do as much as I would like. When I do have the spoons (energy) to clean, the results lift my spirits so much that I have to conclude that housework is spiritual. Blessings as you sacrificially set the spiritual tone in cleaning your home.

 

They weren't forthcoming!

 

So Christmas has come and gone and I am totally down and out with a severe fibromyalgia flare.

Our festivities weren't grand and we stayed home. We had family come on Sunday and then on Tuesday and it was fun but exhausting.

Come Christmas Day, we just stayed home by ourselves. I was so fatigued and in pain that we decided that leftover ham sandwiches were good enough for lunch and dinner.

By 9 o'clock Christmas Night I was in bed and stayed there all Boxing Day. I was so tired and stiff in the muscles that I could barely move. Painkillers didn't help at all...

Saturday saw me cook dinner and lay on the couch and that was all I could manage.

Lucky that I don't believe in Santa any more or else I would be sorely disappointed... all I wanted was some spoons for Christmas... and they weren't forthcoming.

Dwelling in acceptance and peace

 

So over and over again lately, I have had to have a nana nap in the afternoon. I simply can't stay awake all day.

In the past, I have tried to push through the daze and thick fog of sleep deprivation, only to find the fibromyalgia flare, angina pain, neuropathy and endless pills to keep me functioning put an end to it.

After 25 years of fibromyalgia and other chronic illnesses, I have decided that the spoons win. I have given in to their control. I now plan an hour or two hours sleep in the day.

After the daytime sleep, I find I can function enough to cook dinner and feed the cats.

I think being nearly 73 years old doesn't help either. I talk to my friends who suffer no chronic illness but are the same age as me, and they are finding a nana nap is indispensible. 

Another strange thing I have noticed is that I seem to have a better quality of sleep in the daytime. As a result there is more restorative benefit from giving in to the fatigue.

I have decided to once and for all accept that my body needs extra sleep and learn to live with it.

By taking a nana nap, I find that the spoons don't win entirely. Sleep truly is a gift from God...

Psalm 4:8 In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety.

I know at this season of my life that I can take that nana nap when I need to or leave the clothes to be folded another day. Likewise I can go to bed as early as I want... there are no schedules to keep.

Each day brings its challenges but even so, I am glad to be here...life is still sweet!

Even in this quiet season of my life it is very comforting to know that I am just where God wants me to be-quietly dwelling in the simplicity of acceptance and peace.

Our newest family member

So we have just adopted our new sibling for our white cat, Xena. Like most new additions to a family, there is an immediate reaction of rejection, forcing our new male cat Milo to hide in fear.

Most times Milo will venture out from behind the couch when we call him. He comes to sniff our hand and stays long enough for a quick pat on the head, but that's it.

We are hoping that he and Xena will eventually get on and we console ourselves that it is early days yet.

Not particularly wanting another cat, we couldn't resist taking him off family member's hands as they no longer wanted a cat. We couldn't bear the thought that he would be taken to the pound and maybe euthanised.

Chris and I love cats and with both of us being chronically ill, we find they help us relax and increase our enjoyment of life.

We both agree that the joyful company of two felines will be worth any initial trouble between Milo and Xena and the extra fibro pain as I clean up after them.

If it doesn't settle, down we figure that Milo needs us as much as she does. 

So far today I have made an apple pie with Hermesetas for sweetening. On the stove a Dutch oven holds my pumpkin soup.

I am hoping the enticing smells will make Milo hungrier as he hasnt touched any food since he got here.

Xena has eaten but is now on the guest bed chasing the sun... obviously keeping her distance from our newest family member.

I can dream, can't I?

 

So I was visiting Chris at the hospital after his stroke, and was making painful slow steps with my walker along the miles of corridors to the lift.

Suddenly I was met by a rather large robotic sweeper cleaning the floors. He was almost as tall as me, and moved at about the same speed.

I knew that after I got off the lift that there would be a lot more walking to do until I got to my husband's room. And I was already feeling breathless and exhausted.

My fibro was flaring, my knees were hurting and my heart was paining me. Breathing was an effort, so much so that I almost felt the need to hang my arms around its neck and hitch a ride...

I smiled wryly to myself as I pushed the button in the lift to the Avon floor where Chris's room was. It will only be a matter of time before we have automated wheelchairs ready to whisk us to wherever we need to go in these places.

I could just see it in my mind's eye, gladly sitting in one whilst holding onto Chris's sportsbag of freshly laundered pajamas and toiletries for his stay.. 

These robotic AI directed chairs will have to have a name... and then a direction... yes, I can see it now, "Morning, Jeeves! I am glad you are here! Take me to Avon, and don't spare the horses!"... 

As I limped along, I thought how wonderful these chairs would be, but they won't probably be available in my life time... but meanwhile, I can dream, can't I?

                                       

Advice put into action

 

I have had a perfectionist streak all my life, but in the last twenty or so years of fibromyalgia and other ill health, I have had to learn to be content with a more relaxed approach to my home making.

Where once I would be consumed with (false) guilt because I made our bed without four corner tucks or I had the blankets bumpy on the bed, I have had to make do with a more lenient approach. I simply don't have the energy to do four corner tucks. However, even the bed made up quickly and sporting a lump here or there, is extremely satisfying to me now that I've gotten past the perfectionism.

Mornings are no longer the time for house keeping. I have to fit in what I can over however long it takes me... and be content at the end of the day that I actually got it done...

I no longer allow cleaning schedules to dictate to me what I must achieve in any given day or time frame: it gets done more or less within the schedule but on a time of my choosing. It's the only way a Sacrificial Home Keeper can manage..

In saying that I am no longer a perfectionist, I still like to live in a clean home. For me, there are basic things that are not negotiable. I cannot live my life happily unless these things are clean:

I must be clean.

My clothes must be clean.

My bed must be fresh and clean.

My dishes and cooking utensils must be clean.

I can't stand smelly toilets and these and my bathroom must be clean.

These days I need help to maintain this list of essentials.  I do not go into a spin if a fly has died on my window ledge or there is some dust on my furniture. I have learned to accept white cat fur as a part of being a mother to a white cat. The floors can be in need of a vacuum, but I now have Roombas to do them.  It has been years since I ironed something that only I will see... and I learned years ago that one can sleep on unironed pillowcases... it can be done!

I find cooking, shopping, menu and social planning, washing and folding of clothes, managing finances and being a loving wife to my sick husband is enough for me to cope with. I know from experience over the years that by not pacing myself, I will crash and burn and my recovery time will need more than an occasional nana nap...

Accepting our limitations is an important part of staying calm in a world that has become anything but. And for most of us Sacrificial Home Keepers, our world is our home. 

One final thought that helped me was remembering what our family doctor once said to me when my children were young: "A home should be clean enough to be healthy, but untidy enough to be happy!"  I am trusting that I have at last put his advice into action.

I have never been so embarrassed!

 

So as you know, my husband Chris has recently been a week in hospital. We saw many different doctors in the lead up to his diagnosis of Cranial Sixth Nerve Palsy caused by a stroke.

As Chris was not aware of all the medicines he was on, he left it up to me to discuss all medical matters and medications.

I was already stressed and feeling the effects of a fibromyalgia flare. Truthfully, I was exhausted and hurt all over. 

It was an effort to stay awake every day as I sat by his bedside but I wanted to know what was ailing him.

Eventually the doctor in charge of his case came in to update us. I had an important question to ask him and I knew I would forget it if I didn't ask him immediately while it was fresh in my mind. Fibromyalgia does that...

So jumping straight into his conversation with Chris, I told him that my fibromyalgia was flaring and that I had to ask him something important before I forgot.... and I apologised for interrupting yada yada...

Then I forgot. Silence. Expectation. Pregnant pause.

I was so busy explaining my fibro fog and flare and apologising, that the reason for the interruption was over. The question hung in swirling mists of fibro brain fog and I sat red faced and embarrassed.

The doctor looked at me and waited, allowing me time to gather my thoughts and when they weren't forthcoming, he resumed his conversation.

I hate fibro. It rules my life and ruins my credibility as an intelligent woman. It pains me and weakens me, enveloping me in a cloak of weariness that no amount of rest can cure. And it embarrasses me.

I have never been so embarrassed! 

So very grateful

So we were watching TV together when I noticed Chris was shutting one eye and then the other. Then he told me he had a really bad headache.

I gave him some paracetamol and he fell asleep on the couch after taking it.

A day or two afterward, he was looking at me and I noticed his left eye was turning in. That's when the double vision came into play...

After putting up with it for a week, Chris decided it wasn't getting better, so we went to the ED.

They noticed his right eye stares straight ahead, making the left eye turn like it should, but causing double vision which made him feel nauseous.

They noticed his blood pressure was quite high and started him on more medication for it. They ordered a Cat Scan on his head and admitted him.

The CT scan showed no abnormalities, so they followed up with a MRI which did. Chris had had a stroke in his cerebellum.

It was not a bleed but rather a blockage, and they believe this caused his double vision known as Cranial sixth nerve palsy. They don't know if it will be permanent or not.

They are treating his blood pressure,  upping his insulin for the diabetes and putting him on aspirin as a blood thinner, as well as giving him statins for his high cholesterol.

He will be treated by patching one eye to avoid double vision and taking the aforementioned medications. This will be punctuated with GP visits, physiotherapy visits for eye exercises, endocrinologist and neurologist.

My fibromyalgia has flared as I am exhausted. I stayed everyday of his week long hospital stay from 10-7pm. The weather was changing all the time as we are in our spring and I have had angina because the stress was mind numbing..

We are so very grateful that the stroke wasn't worse and we are praying believing that the eye nerve damage will sort itself out. Also we are praying that he doesn't have another stroke.

Mostly we thank the LORD for another chance at life together..

 

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. 

Like I've never had a thought!

 

Brain fog from fibromyalgia happens to me quite regularly and loves to spring on me during an important conversation, especially at medical appointments.

Over the last few days, I have had a cancer scare with someone dear to me, and my fibromyalgia has flared and with the pain comes that most embarrassing symptom of all: fibro fog.

I was talking on the phone to my sister, and was telling her something that had happened, but I never got to finish what I was saying. I got distracted mid-sentence and never finished the tale.

Unsure of her knowing of whom I was speaking, I digressed in a discussion on who he was, and when I tried to remember the point of discussion- I simply forgot.

Being that my sister also suffers from fibromyalgia, she understood-otherwise it would have been totally embarrassing. But there have been times in the past when I simply can't think of a word and flounder.

Like the time I was at the doctor's and was telling him something important. I simply forgot a word and there was a pregnant pause as I floundered to find it- embarrassment made it more difficult to find. He just looked over his glasses at me until I ventured to say that my fibro was flaring and this isn't usual for me. I am usually verbose.

Many times during a fibro flare, I can be reading something and it just doesn't sink in. I reread it and reread it before it is clear what I have just read. Or I can be paying the bills and have to check upteen times before I pay it to make sure I have the correct amount and I must check again to whom I am paying said correct amount. 

This coupled with the physical pain and fatigue make for a very challenging life during a fibro flare. It has the propensity to sap you of your self confidence. It can make you doubt your sanity. It can scare you to death as you worry about your competence to even run your own life at times.

I would not wish this on anyone: the pain. the fatigue. the confusion. the sapping of confidence. the insomnia. the judgments.

Many times I cannot attend church or read my Bible and I sense that there are some who think I am backsliding. Far from it. I am simply too exhausted.

All these things are a Fibromite's lot and no one seems to understand if we give in to a rare moment of snappiness or pique. It's just that the whole fibro thing with pain 24/7 gets one over it very quicky and it gets very tiresome! Pain can't be seen but fibro fog can... it's like I've never had a thought!

 

New favourite things

 

So I have recently prioritised some things in my life which thanks to ageing and illness, have become my favourite things.

My most favourite thing is my new Roomba 105 which is really nifty. I never have to touch it. I control it from my phone and it maps my home.

It follows a set routine for each day and empties the dustbin by itself. When needing to charge, it does that autonomously too. I love it.

My daughter-in-law gave me another air fryer. I am now able to fry meats in one and chips or something like that in the other. This makes cooking dinner so much quicker and easier.

And speaking of dinner, I have found an easier way of using my slow cooker. I have plugged it in the walk in pantry and it saves not only benchtop space but pain in my back. Sometimes just tweaking something as simple as where to store or use an appliance, can take some of the pain of the chore away.

With frequent fibromyalgia flares I find getting comfortable in bed difficult, but my new pillow top mattress cover has added some extra softness and makes sleep possible.

I have made good use of Temu wherein I have purchased some gadgets to help my hands when cooking. I have a rubber tipped stick/spoon that helps me mince my beef mince when cooking. This helps me so much with my arthritic fingers and wrists.

Also, I have found a friendly nearby pharmacist who delivers my meds and who will even pack them in Webster packs when the time comes that I need help. This service both for delivery and organising my meds in packs are free services.

It's nice to reflect on the good things in life and bring to mind my new favourite things...

A longing for a cup of tea

 

As you know, I have been put on insulin and my sugars are still unstable. My doctor and I are trying to get my sugars stabilised and it's been a bit of a nightmare, to be honest.

On top of this, my fibromyalgia has flared majorly due to us entering our spring, bringing changing weather and muscle pain that is unbearable.

My knees are totally killing me as well and there's not really much I can do. The lymphoedema is progressing nicely, making my legs and arm swell. Again there's not much anyone can do.

The sugars are peaking and at times like these, I feel like I am having a panic attack. It's not, it just feels like one.

My fingers are sore from constant blood glucose testing and I have bruised my stomach where I have injected. This probably so because I am on blood thinners.

I have a raging thirst with the sugars being high and I usually drink loads of tea over the day. I have bought zero sugar soft drinks and cordials, but the horrible after taste mingles with the fruity breath from the burning sugars, so I have been cutting down on them too.

At the moment I am trying to train my taste buds to go without sugar and though getting a big urn for instant boiling water was something I wanted to do, I have put that too on the back burner.

It will stay there until or if, I find a sweetener that doesn't leave a bitter after taste. I hope it's soon because I have a deep longing for a sweetened cup of tea...

It's not about how fast I spin my wheel

 

Lately I have been battling chronic health issues. My fatigue has hung around me like a wet blanket.

My pain levels and fibromyalgia flares are so high that I cannot function properly and this makes it difficult to think clearly, hence I have not posted any new blog entries for quite some time.

I've now entered yet another phase of my life- injecting insulin twice daily to control my Diabetes type 2. As with any new treatments, I feel a bit apprehensive.

In truth, I have been thinking that I will not have many more days of productivity and this makes me afraid.

Walking the path of illness is often lonely and I vascillate between coping with it and struggling.

 It is comforting to remind myself that my worth is not measured in how fast I spin my wheel.

Dusting off my wheelchair.

 

Last week my knees both popped out as I was gingerly walking up the passage to answer the door.

I can't tell you how painful it was, but what I can say is that it reduced me to tears and I am not a woman given to crying.

As you probably know, I have ligament damage to both knees which due to co-morbidities, they cannot be repaired.

Chris immediately brought me my walker and after getting my breath back, I limped to the kitchen table and sat down.

It's now the final straw in the pain stakes. With heart and lung issues, plus severe fibromyalgia and polymyalgia rheumatica, and now my latest challenge, lymphoedema, it all became too much.

I have my wheelchair in the garage. I havent used it much but it will have to be used now. My mobility aid scooter is OK but I cant take it into the shops.

Chris read my thoughts and is out in the garage, dusting off my wheelchair...

Who would have guessed?

 

I have been really unwell and tired with a fibromyalgia flare these last few months, so I decided to try some natural remedies in the form of smoothies.

For the first time ever, I purchased and tried fresh pineapple with devastating results.

Amost immediately, my throat was sore and my tongue burnt. My lips started tingling then broke out in blisters. My tongue swelled and blistered soon after as well.

I gargled salted water and bathed my lips, but even so the discomfort continued for about two hours.

It was puzzling to me that I have in the past had pineapple on pizza and in drinks and I never suffered any bad reactions.

I googled pineapple allergy and was surprised to find that most pineapple allergies come only with the fresh fruit.

From now on I will not be buying fresh pineapple as it was a nasty experience. I will also be sticking to other fruits and vegetables for my smoothies.

Pineapple allergy: who would have guessed?

A wonderful place

 

As I get older, I have grown to appreciate my home so much. I have strived to make it an oasis of calm when the world is anything but.

There is much enjoyment in just staying home and relaxing when needed and eating some comfort food and making tea as desired.

It has taken me years to streamline my home making to accommodate my need for pacing due to my many illnesses, especially fibromyalgia.

I have needed to curtail my perfectionism for illness has put an end to that. And with that, peace has come.

To be able to stay at home and just do what is strictly necessary on a spoonless day is very freeing, as is slipping in to bed when I need it.

Knowing I have no need to face a busy world unless I want to is comforting as well. Sometimes leaving home is a struggle. By the time I have showered and dressed, I am totally exhausted.

By accepting myself, which includes my ailments, I have put to bed false guilt and have come to a place of peace. 

Along with my home, it is a wonderful place to be in...

We have to live through the bad times

Every day is precious no matter how much you ache or hurt. Life has to be lived rather than endured.

Realising how short life really is should encourage us to live it with courage, taking hard times as

a challenge. And living with fibromyalgia is a big challenge.

Not every day will be sunshine and roses, but those days will help us appreciate the days that are.

Remember too, we have to live through the bad times to get to the good.

 

 

Made with Love

 

I have been watching You Tubes and Face Book reels of people cooking and it sometimes makes me feel inferior as a cook.

All my life, I have a love/hate relationship with cooking and honestly I can say I am no chef!

Because I believe that eating nutritious food is important, and that meals cooked at home often create good memories, I have always tried to prepare tasty meals for my family.

Even with my chronic illness and aging, I still cook for my family and it is always some protein with vegetables.

With fibromyalgia flares and episodes of chronic pain, I often feel like offering something straight out of can or not so tasty, but I remember what my mother used to tell me: it takes just as long to prepare something nice as it does to not bother. 

Accordingly, I always take effort in making something that my family like. I feel better about myself and they know that their meal is made with love.