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...

Not falling off the vine

 

Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.

We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.

The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.

In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.

I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.

Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.

But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...

Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting. 

But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...

So, with His help, I am definitely not falling off the vine! 

Spoons are a distant memory.

 

Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.

It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.

I can sleep for 12 hours and still have no energy. 

We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.

I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second! 

My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.

No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life. 

Spoons are a distant memory.

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. 

You better go check yours out!

 

So as you know I have been having problems staying awake. Even after 8 hours of sleep, I battle keeping my eyes open during the day.

This has had me perplexed and I have blamed my fibromyalgia, which still may be a part of what I have been struggling with, but certainly not all.

Going through my refrigerator last week, I sorted through the side top shelf on the door where I keep Chris's insulin injections and my thyroxin. Checking the dates, I was shocked to see that my thyroxin was out of date by two months!

I quickly discarded them and put a new week of indate tablets in my pill container for the week. No wonder I have had peeling skin off my face, hair loss and fatigue...

It's been 6 days so far with little change, but I would expect the synthetic thyroid hormone to build up in my system soon... I am hoping I don't have to wait long.

I am so switched on with medications and foods and so on that have a limited shelf life, but this time, it fell through the cracks...

Considering I have been battling a long term fibromyalgia flare for about 10 months... yes nearly 11 months since moving here, I guess I have to cut myself some slack. Nevertheless, when I discovered the out of date meds, I did tell myself  that I am an old sausage! And I am!  You better go check yours out! 

It starts with you

  

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

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

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

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

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

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

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

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

Welcome! Come in and lie down!

                                                    

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

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

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

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

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

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

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

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

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

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

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

    

             

No spoons required

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

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

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

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

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

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

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.