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.

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.

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! 

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. 

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.

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?

Stopping perfectionism in its tracks.

 

In my early days, I used to be a perfectionist in my homemaking. I dusted and vacuumed the house every day. Clothes were washed, dried, folded and ironed the same day.

With the advent of spinal problems, kidney stone surgeries, and later heart surgeries, the perfectionism wained.

After my children were grown there wasn't so much work to do. With the advent of fibromyalgia and now lymphoedema, I am lucky to be able to stand long enough to cook a meal- let alone iron stuff that nobody sees much now that I am a full- time couch potato! 

In spite of everything and with help from my Home Support Package, my home is still clean and by constant chipping away at tasks, it looks reasonably clean and organised.

I still have pride in a job well done, but the push to produce and the motivation is almost gone.

Illness has a way of stopping perfectionism in its tracks. 

Letting nothing you dismay!

  

With the continuation of my fibromyalgia flare, I have been simplifying my Christmas decorating, gift buying and so on.

Chris put a wreath on our front door and I decorated our mini Christmas tree. It sits on our coffee table measuring eighteen inches and has lights.

I have no spoons to go shopping and have done most of my Christmas gift buying online over the year. It has saved me so much energy. These days, just getting dressed is a struggle, let alone going out shopping.

Woolworths supermarkets have a delivery service for online shoppers and I take advantage of that. I have my food list for the festive season and I will be ordering from that.

Cooking wise for Christmas Day, I will be preparing  a fresh salad and some curried hard boiled eggs. The rest of our food will be pre cooked. We will be sharing a meal with family  who are all going to bring something.

Gift wrapping is not a job I enjoy and with a fibro flare in full force, I will be giving the grandchildren money.

Christmas with a chronic illness like fibromyalgia is a stressful time, but with a bit of planning, it is possible to get through and maybe even enjoy the day.

So I find myself ad libbing to the carol "God rest ye merry gentlemen!" by singing "God rest ye tired Glenny Hen!" followed by "let nothing you dismay..."

Let's resolve to make this Christmas a simple affair and enjoy the festive season as much as possible in spite of fibro. And remember- we will be making memories that will always be cherished in years to come. "Let nothing you dismay..."

Rome wasn't built in a day!

 

As you probably know, we have recently moved again. It is almost complete with just a few boxes to unpack.

We are so very tired and I have exacerbated fibromyalgia and angina pain.

We love this new house and is still quite large like the one we have just left. But honestly, I really hope we dont have to move again because I feel quite done in.

Most things now have found a new home, but as soon as I recover from the move, I will declutter and organise our things better.

So I am finding myself falling asleep at the computer or feeling really razzed, and I have had to have a nana nap during the day or I won't have enough spoons to cook dinner...

And speaking of dinner, I have been making use of my slow cooker to help me when I haven't got any spoons. It has helped take the pressure off me.

Lately having no spoons is my new normal so I have had to rest and pace myself. 

Something this move has taught me is to be patient. I have had to learn to wait until others are able to help me and my new mantra is "Rome wasn't built in a day!"

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

Not any time soon

 

These last few weeks have been difficult to say the least. We have been moving my sister in here until she finds a new home for rent. With fibromyalgia flaring, the spoons have not even been seen.

To top it off, RSV has been in our house and we have been knocked down like flies.With Chris, Julie and I all suffering from heart and lung problems, RSV hit us hard.

I caught it off my great-granddaughter when she came for a visit a week before she developed symptoms. Being a sharing person, she passed it on to her mother, Chris and Julie then me.

Chris only had symptoms like a bad cold and was ill for about a week, I was very ill with it lasting two weeks and Julie was sickest of all with hers lasting three weeks. Julie has lupus so it played havoc with her health.

This is not a virus to be played with. It honestly nearly carried Julie and I off. Julie told me it was worse than when she had Covid. I can only attest that it made me sicker than when I had pneumonia. I have never had Covid, and I tested myself at my sickest point. It was negative.

Now I am feeling a bit better but it has left me very exhausted and requiring frequent rests and/or nana naps. Maybe it's that and my fibromyalgia flaring. It was hard work moving my sister..

So to today: I am slowing trying to get my home into order. My floors need vaccuuming and mopping. My toilets are in need of a good clean and I need to conquer Dish City and Mt Laundry.

I will get there but not any time soon. 

I. have. never. felt. so. weary!

This last week has been very taxing. We have had to help my sick sister close down her rented home and move in with us until she finds another rental home.

We have been so stressed due to the increased pain and my fibromyalgia flare is off the charts!

There's times in life that you have no choice but to pitch in and this has been one such time.

Because of the stress we have come down with a chest cold which is the pits at the best of times!

All I can manage today is to make some  Jewish Penicillin. I am planning to have a nana nap soon.

Each morning I wake up unrested and have no spoons to speak of, yet I still manage to help in the packing and keep up with washing and dishes.

My grandson and son are moving the heavier stuff today so I am flaked out in my armchair.

I. have. never. felt. so. weary! 

I am already there!

   

In a few days I will be turning 71. It's been a bumpy ride punctuated with bursts of hard work in raising 5 children punctuated with the misery of chronic illness adding to the joy.

I think it's normal to feel tired in your seventies, but when one has fibromyalgia, polymyalgia, heart disease, spinal problems, diabetes and pulmonary hypertension as constant companions, well- it makes me tired just thinking of doing the smallest task.

Lately I have been reflecting on my life and trying to simplify it even more than it is now. And I have done a few things to avoid feeling false guilt and perfectionism.

I have unfollowed all my online groups for cooking, housework and household tips and decluttering. I still do these things, but at a snail's pace. I don't have to add to my perfectionism by fueling it.

I have also unfollowed all my feeds for pregnancy, childbirth and breastfeeding as it tends to make me nostalgic for something that is no longer a part of my life.

Similarly, I have gotten rid of household check lists and calenders about homemaking routines. They never work for me as I am so often out of spoons due mainly to fibromyalgia flares.

All my married life I have written out meal menus but now that Chris is very often not hungry or at least is very picky, I must cook to adapt to his fancies for dining thus invalidating my menu plan..

Always an Aldi girl, I now shop for groceries totally online, visit my doctor via phone consult, order  my prescriptions online and pay all my bills online.  

I rarely leave the house these days. Everything is slowing down for me these days and I need it to stay that way. 

Even with help once a fortnight for housecleaning, I find just running the home during the two weeks between cleans physically taxing. 

As I said, I think it's OK to slow down when you age...and I am no longer like the fairy godmother... managing my home easily and without much effort. 

I just have to accept that like the fairy godmother I am not getting old: I am already there! 

Russian roulette

 

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

It's a game of Russian roulette to take a gamble of feeling better after a nana nap. Waking up can go either way.

Are you willing to gamble reliving morning muscle pain again? Lotsa luck!

It was good while it lasted!

So yesterday I woke up without the usual muscle pain and fatigue that characterises fibromyalgia.

I sensed that I had some spoons in abundance and I was in a quandary as to how I could best utilise them without giving myself a flare the next day.

I decided it would be sensible to pace myself which is what I did at first... I say at first because like all good intentions, they can fall by the wayside. And they did.

There was so much I had put on the back burner and left undone. But then it was a long time since I had any energy and to be honest, I was so used to living with chronic illness and fatigue that feeling energised seemed "abnormal"

So I started a load of washing and cleaned out Xena our cat's litter tray. Then I hung out the finished  load of whites... also something I have had to forgo due to no spoons and pain.

I rummaged through the fridge and cleaned out the out of date food. Then, remembering to pace myself, I made a cup of tea for us both and decided we needed some cookies to have for afternoon tea.

After I made a batch of cookies for the afternoon, I brought in my washing. It dried quickly because the weather has been rather warm.  Too warm in fact.

By the time I came back inside, I was wilting. My spoons were dissipating! Quickly! 

My muscles and back started paining me and it hurt to turn my neck thanks to polymyalgia rheumatica.

I left the clothes in the laundry trolley and kissed thoughts of ironing my pillow cases goodbye. I had so wanted to do that too... just one of the jobs that I had to put on the back burner, put back again..

Chris made me a cup of tea and I took some Tramadol. I only use them for top of the range fibro flares and knee pain.

As I sat sipping my tea and waiting for the Tramadol to work, I realised that I hadn't got much done in spite of some spoons. 

Xena had a clean litter tray. We had some cookies to wash the tablets down. The fridge had no science experiments but didn't get a thorough clean. And I hurt so badly for so little! 

If I ever get another day with some spoons, I will not bother to hang the washing out... I nearly always use the dryer since fibromyalgia found me. And I know my poor old broken knees will thank me for not walking so far up the back garden to the line.

I guess I can sleep on unironed pillowcases.. it has been known  to happen! And as the pain relief finally kicked in, I decided that you can't really win with spoons. They are devious little dictators!

Chronic illness is not for wimps and I refuse to give in to depression. I think all things considered, I do a reasonable job of keeping our home nice. 

Still it was great to wake feeling refreshed and alive! It was good while it lasted! 

The power of a nana nap

 

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

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

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

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

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

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

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

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

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

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

Xena's still upset with me!

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

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

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

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

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

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

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

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

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

It's OK to have a simple Christmas

As you know, I have been having problems with my heart and fibromyalgia. My blood pressure is barely controlled and I am constantly tired.

We have decided to cancel Christmas this year. I haven't even put up a wreath on the front door, let alone, a Christmas tree.

We are staying home and nobody is coming. Contrary to how I would feel in years past, this year's plan gives me peace.

We plan to play games online with my sister and son. There's nothing like a game of online Scrabble with familiar people who are well matched in scores.

None of us is able to attend church these days but that doesn't stop us from worshiping God and remembering Jesus on the day we choose to celebrate as His birthday.

Next week I will be ordering my Christmas food and I will be buying a ham and organic salad vegetables for Chris's and my lunch. I will also be buying some grape juice and matzo crackers, as we plan to take Communion online with my sister and son like we did last Easter.

It is not an ideal Christmas, but with all of us feeling unwell, it is making the best of a bad situation.

We all feel that as long as we remember that God sent His Son Jesus to bear the sins of the world and be our Saviour, then that is what Christmas really is.

Besides, the first Christmas was extremely unpretentious and simple. It's OK if ours is too...