It's gonna be a PJ's day.

 

The rain is pouring down but it's not cold just pleasantly warm after the last few days of summer heat. Xena is still asleep on my bed.

Chris is watching TV and I have got the breakfast dishes soaking in hot soapy water. The house is tidy and cosy. Life is good.

I woke up early and left Chris to sleep. I heard the birds calling each other and watched as my beloved magpies came down searching for some left over sausage among the rice dish I put out for them last night.

Carefully opening the sliding door that opens to the garden where they congregate waiting for me to feed them, they sat only inches away from me. Gradually they are coming closer to feeding from my hand. 

The washing machine is churning away at the load of clothes I am washing. I try to do a load a day so as not to use up all my spoons in one hit, folding them and putting them away. 

People with fibromyalgia would understand the need to pace oneself in order to achieve some completion of household tasks. There's so much job satisfaction in even doing one load of washing and putting it away. 

I have some steak thawing for dinner tonight. I am planning on cooking a vegetable intensive beef stew.

With the cooler weather and rain, the menu begs for a stew...

I still haven't changed out of my pajamas and it's 1pm but I don't really care. We aren't going anywhere and I am feeling pretty laid back and a tad achy. It's the change in weather.

It was a pretty slow but pleasant morning with Chris making me some breakfast and a cup of tea. The panadol is kicking in helping me with the aches and pains of fibromyalgia that's reacting to the weather change, but I am glad to report that it's not a fibro flare per se.

So in spite of aches and pains, I am feeling pretty good today, but even so, it's gonna be a PJ's day. 

We need to share the load

Sometimes I feel guilty for letting off steam at times but I really believe I could have a bit more support than what I am getting. 

We sometimes have words during my fibromyalgia flares and when I have polymyalgia rheumatica at the same time, it can make me scream in desperation. I just want a hand. It helps me emotionally as well as physically and I feel nurtured.

I know my husband is unwell and he has my understanding and utmost sympathy. But sometimes, the pain gets so bad and I have so little spoons that I will yell at him to come and make his own cup of tea or whatever.

After words,  I often cry because I aren't usually like that.  Pain changes people.  Especially unrelenting pain. And unrestorative sleep. Especially that.

Yet, to those who don't know the desperation that pain drives you to, they would just think I was being unreasonable and using my fibro to elicit a response from Chris. 

It's not that at all. Our health issues mean that there are times when we have to help one another. And lately when Chris is not well, I find I am left to push myself beyond my own comfort level while he sleeps on the couch.

His pain is not at the same high level mine is. His health issues relate to other issues regarding heart problems. But his issues are difficult for him to bear. I know that. 

Chronic illness in both people in a marriage presents its own problems. Each one having pain that makes the eyeballs bulge, causes arguments of who's pain or condition is worse than the other's. A form of validation if you will.

But here's the scoop about chronic illness. It's not a contest. Just another thing about chronic illness that most don't understand. We need to share the load.

The trust is gone!

Just something funny but serious happened here this week. We both have had stomach cramps and the runs and we were questioning what foods could have been responsible. Nothing out of the ordinary was eaten... well, I started using new dishwasher stuff and Chris has been helping me load it. 

Today we were doing it together and I said that it needed more drying aid in the dispenser. So Chris hands me the drying aid...only it wasn't it. It was the dishwasher cleaner... I said is this what you have been using? he said it was... I told him it was the wrong product... his response was but it is blue!.... 

No wonder we were having bad cramps... He needs to get his eyes checked. Seriously! the trust is gone... I will be loading the dishwasher myself from now on.... perhaps that was his plan?! lol

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.

Today is pancake day!

 

So today I wanted to make some pancakes for Chris's breakfast. I went to my pantry confident that I had a few packets of plain flour there, waiting to be used.

Sure enough, I not only had plain flour, but self raising flour and cornflour. I always keep a spare of everything in my fridge and pantry. Just in case there's a shortage or I don't have money any pay period.

I measured the plain flour and noticed it was a little dark. So I tasted it. Bitter. So I checked the use by date. Best before July 2021. 

Flabbergasted, I checked the other flours and they all were out of date- by two years!

When covid was at its height, I remember buying extra flour and sugar so that I could at least bake something tasty when we were staying home... 

Feeling a bit guilty that I havent baked for a couple of years, I recalled that my fibromyalgia had been bad all that time, and I toasted a couple of crumpets for Chris and promised to add flour to the shopping list for next week.

He was so longing for pancakes but settled for the crumpets and tea. 

Pancakes weren't meant to be today: but next week I am sure Chris will say, "Make me some pancakes for today is pancake day!"

Bushed but satisfied.

Today we have no physio or doctor appointments so we can stay home. I am ploughing through 3 loads of washing and I have to clean my kitchen. 

I am cooking a pork stew in the slow cooker. Chris is feeling unwell and is sleeping a lot. I would be if I could with my fibromyalgia flaring, but I am waiting for the cleaner to come.

I have finally found a cleaner who can fit both DD Dianne and my homes in for a clean once a fortnight. They are doing hers at 2pm and ours at 4pm today. 

Although my Roomba is doing a great job, it needs someone to get into the corners it misses so I will ask the cleaner to do that. Basically it's my floors and bathrooms that need cleaning today with the beds changed starting next Wednesday week. 

We only have Chris's "man cave" to sort out now- the rest is done and the place looks nice. We are totally bushed, but it a satisfying feeling to look around and see it all come 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. 

We really like our new house

 

I pushed myself today to do some work and unpack. I know it's not the best thing I can do with a fibromyalgia flare, but I need to get my home organised. We are about two-thirds unpacked. 

But of course the cooking, cleaning, dishes and washing have to be kept up and I managed to get the kitchen cleaned and a load of washing done. 

My daughter Dianne came home from hospital after her knee replacement. She's doing really well, praise God. 

Chris isn't feeling too great so I have to wait for the heavier things to be unpacked. We really like our new house.

Sex isn't everything.

This picture reminds me of Chris and I in the kitchen... I often can be washing the dishes and he will come behind me for a cuddle.. I still blush and giggle like a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything! (This post has been written with my husbands' permission)

But then again, maybe not!

 

With the start of our summer tomorrow, we have been having some very lovely days this last week and today. I have enjoyed the respite from constant rain and so has my body.

Fibromyalgia has taken a back seat and I am enjoying having some spoons. It's been so long that it is a surreal feeling. 

I have been washing our bedding after the winter months and will be packing away our doonas. We both don't sleep very well and so we prefer minkie blankets. They are light and easy to throw off if we get too warm, yet warm enough to preclude the need for the heavier doonas for a drop in temperature.

It's such a joy to open the windows throughout the house too. We are fresh air freaks. There's nothing like the smell of the early morning. 

I am going to make up my favourite cookie recipe today. And I think I will bake some sultana muffins for Chris. He loves them. 

In stark contrast to flare days, I have already had my shower and gotten dressed. I need to take our bloods and give Chris his insulin injection. I think I will serve him some soldiers for breakfast this morning.

I have pork chops thawing for dinner tonight. I may do an egg salad to go with them. It's salad weather here at the moment.

As I must pace myself so as not to bring on another flare, I think in between tasks I will go out in the back garden and sit on the garden swing. My friends the birds are so tame that they actually come down to eat almost from my hand. It's so relaxing!

I have a lot of things I want to do today, but nothing compares to sitting in the swing in the sun watching the birds. So maybe I will get all those things done, but then again, maybe not! 

Searching for some spoons

                                          

So Chris wasn't feeling well, so we didn't get out yesterday. I ordered $30 worth of groceries through Woolworths online. We have to pick them up at 1pm. It's so handy to shop like that. After that I need to get some prescriptions made up and go to the Post Office.

I managed to do all those dishes yesterday, with just last night's pots and pans to wash today. Tonight I will shower. If I do it this morning, I will run out of spoons and won't make it for the errands later.

It's hard searching for spoons and finding none, knowing that you have to do certain errands like shopping and getting medicines. And the tricky thing is when you find some, they disappear before you can put them to good use, and you find you need to take a nana nap just to accomplish it.

I know with talking to other Fibromites that I am not alone, as having no spoons seems to be a typical symptom of fibromyalgia. So for the next few hours before I pick up the groceries, you know where I'll be: searching for some spoons.

My day is all stitched up

Today is a bad fibromyalgia day. I am aching so badly I want to cry. But I don't think I even have the energy to do that! 

I meant to take up some cricket pants yesterday for my daughter in law. She needs them for next week's first match of the year. So that is on my priority list today. I finally found my sewing machine again. I haven't used it since we moved in here which is 2 years at Christmas. 

I have dishes to do as well as cooking. I had run out of bread and had to ring DIL who lives locally. She picked up a loaf for me at the local store as Chris was feeling too giddy with vertigo to drive today.  I can't because of my torn meniscuses. Woolworths ran out of bread at their online shopping food distribution centre, and although they refunded me, I needed the bread. 

Everybody is buying their food online and Covid seems to be the reason. Their shelves are getting low and every week there's something I am unable to order. I know I can bake a loaf  but I don't have the energy right now.

Would you believe me if I tell you I have psyche myself up to take those cricket pants up?- and that may use all my spoons for today! I guess you could say my day is all stitched up! 

  

Sometimes you have to be your own doctor!

It's Saturday evening here. Not much accomplished today except I washed some dishes and will cook dinner soon. 

Chris's face is improving already with his Bell's Palsy and he can open his eye almost fully and his mouth is not as drooped. He is regaining his speech again and is not slurring his words as much. 

His sugars are way up because of the Prednisolone he's been taking. Consequently, he has been sleeping on the couch most of the day. The doctor wants him to discontinue the steroids so this morning was his last day. 

I was awakened by asthma early hours of this morning. The inhaler didn't help much but I still went back to bed because I was needing to sleep. Especially with my night medications. If I don't sleep for 9 hours, I can't focus properly. Plus I am having the Mother of all Flares with my fibromyalgia and can't stay awake.

We have watched all 14 seasons of Heartland and are now waiting for Season 15 next month. We miss it. There's not much on TV or Netflix that we really want to watch. But I like watching something with Chris.

We put our clocks forward an hour tonight as daylight savings ends. I hope to get a better sleep tonight and I have decided to take some of Chris's Prednisolone if the asthma comes back.-it is an average of a week to get into a doctor up here.  

Ya gotta do what ya gotta do! Sometimes you have to be your own doctor! 

I can't decide what to wear!

I am so excited! Tonight is Bin Night! I get to take our rubbish bins out for collection. With Covid lockdowns, torn meniscus and wonky other knee, spinal problems and fatigue from my fibromyalgia flares, and now a sick husband as well, we don't get out much!

Going out for any reason is a treat and I look forward to taking the bins out. They are so lucky as they go out more than we do these days!

It's all well and good to take them out, and my excitement is real, but I only have one problem that detracts from the pleasure and keeps my feet on the ground- I just can't decide what to wear! 

 

Someone loves her Nana!

I have had our granddaughter Taylah with us for a few days as it's school holidays here and her mother works. Sunday we picked her up and Chris took ill and couldn't drive us home. 

I had to drive the 2 hours home and had bad muscle pain afterwards. Taylah is 9 and independent so she's no trouble.

Today, (Wednesday) I had to take her home and I drove as Chris wasn't much better. The sugars are high and it's effecting his eyes. 

We had take away for dinner. I have taken pain killers and am going to bed soon. Driving isn't fun when you have fibromyalgia, but you just have to do some things that you can't plan for. 

Judging from my pain tonight, I will be resting tomorrow. 

I do have a love note written on my fridge menu white board. It will be something to cheer me up tomorrow when my fibromyalgia flares and I am in pain.. Someone loves her nana.

 

Making memories is what it's all about.

Today is our 23rd wedding anniversary. We celebrated it by reminiscing about the day and looking at old photographs. You can see my post of our love story here.

It's school holidays so today we picked up our little granddaughter Taylah. She's going to stay with us for a few days.

Chris unfortunately took ill during the 2 hour trip to pick her up, so I had to drive home. It wasn't a big deal really, but I am already feeling the after effects in my muscles and it's not even the day after yet.

My fibromyalgia is flaring and I will probably be resting tomorrow. I am having an early night with paracetamol to take before I retire.

I figure I may just as well make the trip and enjoy Taylah as stay home and hurt all over anyway. From previous experience, it doesn't matter much whether I wrap myself in cotton wool or not- fibro flares will keep your body hostage regardless.

So tomorrow I plan to do some slow cooker dinners and enjoy her as much as I can. Making memories is what it's all about.

I can't keep doing this to myself!

When I have a bad flare of fibromyalgia and/or polymyalgia rheumatica, I feel so sore and tired that I often let the dishes build up.

We all know that when you put one cup or bowl in the sink, they suddenly start multiplying and pretty soon you have a stack to tackle in washing up.

With Chris quite ill at the moment, I am loathe to ask him to help me so this problem is absolutely on my shoulders alone.

Last week the lady who comes to clean our house once a fortnight, washed and put away my dishes and it was so nice to see an empty sink and find a clean cup without a search party and ensuing  mammoth cleaning marathon.

I was so impressed that I have kept it up, washing up as we use the crockery. In fact, the first day after she helped me, we got up and thought we were in the wrong house! There was a clean sink and kitchen.

It's taken me 52 years of being a home maker to finally realise that by procrastination- I mean of the long duration type, not once in a blue moon- is a killer not only of productivity but peace.

It's been a week now since I have turned over a new leaf and I have found that it is less draining on my energy levels and is achievable.

I know it's only been a week, but for a chronically ill old chook with longstanding procrastination habits, it's a long time.

It probably sounds pathetic to all the "normals" who say, "Well it's only washing the dishes!", but to a spoon challenged tired sick sufferer of continual pain, it's a big deal!

Another plus is that with the kitchen clean, my spirits have been uplifted and I am far more likely to grab the pile of clean washing and fold it. It sort of has a domino effect! 

Whatever, I feel better for the discipline and look forward to waking up to a clean kitchen now. Besides, with the realisation that housework is spiritual, I find I function best in a tidy house and will make every effort to keep it up and not have a mammoth dishwashing session. I can't keep doing this to myself! 

 

It never rains, but pours!

 

So now not only is my blood pressure high and my fibromyalgia flaring, but I have a flare up of my polymyalgia rheumatica.

I believe it's probably brought on by stress, and with Chris being so ill and newly diagnosed with heart failure, it's been like I predicted: a bumpy ride.

I have been given Prednisolone to take, but it elevates blood sugars, makes for brittle bones and teeth and creates  cataracts. I am not sure what to do...

Today I had intended to catch up on my dishes, but all I have managed is a couple of loads of washing. Between fibromyalgia and PMR, all I want to do is sleep.

It is 6.30pm here and I have made dinner and cleared up from it. I will be having an early night and hoping to wake up with some spoons. We are having company tomorrow so I will have to get up early.

I may take those Prednisolone tablets tomorrow. They may give me some energy as well, which would be great. Hopefully things will settle down soon. I am feeling overwhelmed. 

It seems at this chapter of my life that trouble never rains, but pours!

It is what it is!

Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

It's alright for them!

Since Chris's discharge from the Emergency Department for heart failure, I have been suffering the Mother of all flares. My fibromyalgia has hit an all time high.

No doubt this has been from the stress and anxiety I have experienced since his diagnosis and the blase  doctors who laughed and joked when I asked what his prognosis was.

They made light of my anxieties and wouldn't even engage into any conversation about what exactly was happening to Chris's heart and why. 

I was thinking of making a complaint against them but Chris doesn't want me to.

Their blase attitude to Chris and I reminded me of trying to get my diagnosis of fibromyalgia. The doctors I saw all gaslighted my complaints of symptoms and the anxieties I felt.

It is wrong that they do this to their patients and their family. They should have a little respect- after all, it's not knowing what's going to happen that makes patients anxious, but they often are dismissive and arrogant.

And why not? because it's ok for them to be so nonchalant: it's not their life and marriage potentially going down the toilet. So it's alright for them!