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...