Even pleasant times are draining

Yesterday we had Chris's daughter come for his birthday which was Saturday. She brought a cake and a gift- the top fitted perfectly, but the slippers were too tight for his swollen feet.

Tomorrow we will go and exchange them as I have the docket. We were going to Kmart as Chris was given a gift voucher from my daughter, but he is feeling tired today, so we will make it another day. 

Chronic illness dictates our lives now. Chris with his heart failure and me with my fibromyalgia. Spoons are dictators that seek to keep us immobile with no social outlets. 

These days, we are fortunate in that people come to us. Over the years, they have realised that often it is impossible for us to leave our home to visit them- especially if there is a time-table. One just never knows how many spoons will be available on any day-not until the morning at the earliest.

I only have basic house chores today as all the washing and dishes are caught up. So that will be all I have to worry about with no spoons available today.

It's funny how even pleasant times can drain one of spoons...

Above is a picture of Chris and our grandson Lachlan who also shared his birthday with Grandpa. 

We need an ark!

THURSDAY NIGHT: We are having unseasonable weather with flooding and high winds. Currently having our tenth power outage in 24 hours with large trees blown over lots of roads and in the parkland opposite our house we are out of our diabetic medicines and we can’t get to the chemist.

We have been advised to stay home for safety. I am so glad we are on a steep slope.

FRIDAY: We managed to get through to our closest chemist so we have our diabetic medicine again! We had dinner at Chris's son's as they had gas to cook with. They live near us! 

We have no heating whatsoever and it's winter and the weather is freezing. My fibromyalgia has come out to play! 

SATURDAY:  So pleased that the power came back on last night. 

SUNDAY AFTERNOON: We have just got the modem back on but the phones are still on SOS only. 

The waters came up very high so that the cows couldn't get any food from their pasture behind our back garden. A farmer asked us if he could go through our back garden to leave some hay bales for them. Of course we said yes and he managed to place some in the small island of land in the middle of the flood waters. 

I don't need food or medicine so it doesn't matter that we can't get out for the moment. 

The farmer who came through to feed his cows was very nice and he said he's lived here all his life and has never seen the weather and floods as bad as this one. The weather bureau said the waters should recede soon.

This is the view today from our back porch. The hay was delivered to the island strip of land because through habit that's where the cows were plodding looking for feed. The farmer's house is in the background.

My focus for today is to wash all the dishes and do some washing... I will be cooking lamb stew for tonight. 

More rain is forecast for the next few days with more flooding. If it gets any worse, we are going to need an ark! 

It's the only silver lining

 

So there's been 26 new cases of Covid19 in Victoria, and the government has called for a lockdown of our entire state again.

It's a bit of a drag because we are trying to sell our fifth wheeler and family members are trying to move. With only essential workers allowed to leave the house, it will be all put on the back burner until at least next Thursday.

As Chris is unwell and I am suffering from polymyalgia rheumatica and fibromyalgia flares at the same time, it will not be too inconvenient for us to stay put.

I have been weaned off Prednisolone and after just a few days, I wish I could go back on it. Panadol slow release tablets don't do much to relieve the  pain and my fingers and hands are seizing up again. How I wish they could find something that is as effective in pain relief.

So today I only will be cooking dinner, doing a load of washing and later taking a shower. I am so low on spoons that to me it's a marathon.

With this being our autumn in Australia, I am finding the inclement and changing weather effects my fibro really badly.  So in not being allowed to go anywhere this week gives me a welcome break from having to push myself to get dressed and go out.

I guess it's the only silvcr lining. 

You have to flex with fibro

 All of us who suffer with fibromyalgia know that it's a very unpredictable illness. We just can't plan with it as we don't know how we will feel until we wake up- and even then it's unpredictable.

We can start our day with extreme stiffness and pain, yet can come better by mid morning some days. It makes planning our day difficult to say the least.

I can't count the number of times I have had to apologise to someone for not being able to socialise or go shopping. I felt well at the time of arranging or accepting the invite, but fibro had other plans and held my body hostage.

Countless times I have planned to declutter my house or some other chore, and I have even gotten started only to find that my body was yelling at me, "Seriously??" and I had to stop. 

It is very challenging and even depressing. But it is what it is. Fibromyalgia is a pain in so many ways!

Lately, I have learned to say to people that I would love to come/do something but because of my fibromyalgia, I won't really know until the day how I will feel. So I will say a tentative yes and hope to be there/see you! 

I have had to learn to not be dogmatic about when I will do a certain chore. For example, all my life as a homemaker, I have changed my sheets every Monday. But with the coming of chronic illness, I might not feel well enough to do it that day. I have just had to accept it.

Part of accepting our new normal as Fibromites is to not get too upset if our body fails us on any particular day. We have to remember that tomorrow is another day, and even then it may not support us the day after that. It is just that unpredictable.

I have learned the hard way too that it's no use getting into a funk or berating yourself if fibro calls the shots and shoots down your day. It's not the end of the world, and you just have to flex with fibro...

The only positive thing for spoonies

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

A bit of a wash then au revoir!

So today our fifth wheeler is getting cleaned on the inside and after that we are going to take it to get cleaned outside and put it up for sale.

I have mixed feelings about it really. Our dreams of touring round Australia turned to dust when I tore my meniscus in my left knee and since then I have also damaged my right knee. I walk like Tin Man in the Wizard of Oz! 

The RV was well suited to the Fibromyalgia lifestyle as it was small and easy to clean. But after tearing my meniscus, even the two steps to the bedroom and ensuite were too difficult to negotiate. In the end, I was housebound as it has seven steps at the entry.

We haven't thrown out the idea of travelling altogether. Eventually after selling the fiver, we will buy a campervan that is easy for me to get in and out of and go away for weekends. That is the hope anyway.

Today's to do list:

•  I have dishes to do, 
•  make our bed
• fold a load of washing from yesterday.
• Fish, chips and salad for dinner

Planning to live

 

As you know, I have had fibromyalgia for over 24 years. It never gets better, but by careful planning of my life, I find I can most times live a balanced life.

There are occasions in life that are unavoidable. Sometimes it is of a medical nature like the time I simply had to stir my stumps and get to hospital for my heart stents. It was literally a matter of life or death. No choices about postponing because of a flare- it just had to be done.

Sometimes it is something we have looked forward to and simply can't miss- like our 10am wedding in Melbourne 22 years ago. You may wake up like a train has hit you, but you have to go or life as you want to live it, would take a turn for the worse. As I said, there are occasions in life that are unavoidable. And sometimes, it's worth the anguish! 

Living with fibromyalgia is very tricky. One does not know how one will feel on any particular day, and often accepting an invitation to a social occasion or  keeping a medical appointment is always on a tentative basis. It depends largely on how intense one's pain is at the moment.

Planning to live with fibromyalgia is very necessary and as seen, it is not for the faint of heart. It is necessary to plan and plot moments in our life to allow certain events to unfold.

If I know I have a special event tomorrow, I will plan my menu for the next couple of days to include slow cooker or easy to prepare meals, or I will cook ahead if I have sufficient energy. Or do frozen TV dinners. Housework is set on the back burner for a few days, with me focusing mainly on just doing a load of washing if necessary- and even so, I will use the dryer to save spoons.

As we Fibromites know, after a day out, the next day or two (or three) can bring on a fibro flare and we will be trying to recover and will not be fit for much activity for those days. So we have to plan ahead to include rest.

If we take care to include days of rest after a day out, we should be able to incorporate days out when needed and in so doing, we will be able to feel that we are actually living and not simply enduring or existing.

Medical matters must be attended to look after our health and happy occasions must be attended in order to make memories. If we fail to plan to live, we will always feel that we are on the inside of the window looking out as life passes us by.

 So teach us to number our days, that we may apply our hearts unto wisdom.  Psalm 90:12

And Baby makes three!

 

For the first time in ages, I have a few spoons and I have been having a few days of respite from my fibromyalgia flare.

It is forecast to rain over the next few days, and the weather is cold, so I probably will find this respite all too brief. But, we live in hope.

I have been taking stock of our pantry and fridge because many abattoir workers have been taken ill with the virus and only one abattoir in Victoria remains empty. Which means that there will soon be a shortage of meat and in particular, mince.

Also here the Covid cases are mounting fast and we have been given stay at home orders. So I will be doing my grocery shopping online. I want to make sure I rotate the food we have and don't over buy on things. So that is my plan for today.

I have some bread dough proofing and I will bake that for tonight. I will be serving crumbed fish, mash and salad with it for dinner.

My washing and dishes are up to date and that makes me happy. In fact, I am very happy up here despite the quarantine.

I love our home here in the country and I feel very happy and grateful to God for giving us this home. If one has to be under lockdown, I can't think of a nicer place to do it.

Xena is happy here as well. It's been cold lately but we have turned the heater off as the sun comes in the back sliding door and warms the lounge room nicely.

Obviously not enough for Xena who spotted Chris's new Oodie on the couch, and so decided to make a little nest in it for herself. 

I have a pink one, Chris has a navy one. Best money I ever spent. We love them and it looks like with Xena, that Baby makes three! 

Another day at the beach!

So today I have been feeling so much pain with my fibromyalgia that I could cry. I am not a sookie-la-la type of person, but a body can only take so much.

I haven't achieved much indoors, in fact I have just done meals, checked our finances, fed Xena and done one load of washing.

My muscles feel like they are tearing-literally pulling and twanging when I stretch my arms certain ways. I am taking paracetamol every 4 hours, using the slow release ones for night time. My doctor doesn't want me on anything else...

I did wash and hang out my Oodie  and the weather was beautiful. This morning was so cold at only 2 degrees C. The water in the birdbath was frozen solid.  I am pleased to say that the Oodie is great these mornings- so great that I bought one for Chris as well.

We are in the throes of selling our fifth wheeler and tow vehicle. It needs to be cleaned inside as I have never been back inside it since coming here at Christmas. 

We are getting a lady to clean it for us, and we are going to get the GMC Sierra detailed. As the pain in my knee is now bearable, I refuse to go up and down those stairs one more time. I don't want to risk upsetting the meniscus tear again.

The sun is shining through the back sliding door. I am going to "the beach" again when I finish talking to you. This is the view I have and coupled with hearing the running stream you can see just beyond the fence, it is exactly like laying on the warm sand listening to the birds and waves...

My heart is here

So we have seen total lockdown of a few suburbs in North Western Melbourne because of people testing positive and still visiting family and friends. 

Fortunately we aren't in lockdown yet but I am thinking I better get a bit extra in groceries as lockdowns in Victoria are still a possibility.  Our Premiere has said it may have to be implemented.

We are getting fed up with being home, but we have devised little things to do to make the most of it.

Our little cat Xena has been a lot of fun as we sit and watch her. The birds know she's outside, watching them from a safe distance, but they don't bother with her. They know she's a bit of a coward. If she gets too close they gang up on her and chirp in unison and she feels intimidated and runs off.  We laugh..

Yesterday I baked some bread... it was nice when it was hot but was rather hard when it was cold. It didn't bother our birds who got the left overs.

My last day has come today with the home help lady and I am now on my own for twelve months, until I get the government placing in the Aged Care package. I will be following Sylvia's Lists from tomorrow onwards..

I have polymyalgia rheumatica as well as fibromyalgia at the moment and feel so sore around the neck and shoulders. I am upping my pain killers to paracetamol slow release plus two paracetamol at night. 

Ideally, I would be on prednisolone again, but my sugars are high, I have thinning bones and I really don't want to feel ravenously hungry all the time. Besides, my doctor won't let me have them anymore. 

Not for the first time, I have asked myself why something that actually helps my pain is not suitable? You would think doctors could come up with some pain relief that actually works for all the arthritic and fibro maladies...

I have put the electric blankets on, drawn the drapes and lit the lamps. It's already fresh outside- the hairs in my nostrils just about froze when I opened the door to let Xena back in.

The two heaters are full on so it's not too chilly.  I still love our little home and feel most grateful for it.

Looking at the fire and lamps, our living area has a lovely ambience and it shows me what I feel about living here- the house nurtures us. We both feel that.

If we have to be home in lockdown or because of my fibromyalgia etc, it's such a blessing to have this home to do it in.  

Home is where the heart is, and my heart is here...

Spitting chips!

     spit chips: 

slang To be loudly or vehemently angry. Primarily heard in Australia.Everyone's spitting chips over the recent tax law now, but in a month's time, no one will even remember that it happened.

Although I did get out of bed today, I haven't achieved much. I have managed to sort my dishes out from last night and they are soaking in hot soapy water in the sink.

The washing is still in the hampers, glaring at me when I pass them by, ignoring them as I go to the loo. They will keep! 

I have some minced steak thawing on the kitchen bench and I have no idea what I am going to do with it tonight for dinner. Pot luck! 

How I feel is pretty much the same in the graphic here. I am whacked and in pain that makes it hard to sit and talk to you. My neck and shoulders are killing me.

The rain is really heavy and the temperature is cold. Totally to be expected as it's winter here in Australia. And where we are, it even snows! 

My sister and daughter are Fibromites and are suffering as well, so maybe it's the weather changes..

My plans for baking and icecream making went out the window yesterday and certainly aren't in today's plans. Instead, I am here mentally shaking my fist at fibromyalgia and, sad that I can't do the few things I planned for today, I am sitting here, spitting chips! 

Better days ahead!

We are still self isolating. Chris's sugars are slowly improving, as are his ears. I am planning on decluttering our home today as the home help lady is coming Wednesday to do our floors. I am looking forward to that. 

I ordered groceries online last night and they are going to be delivered this afternoon. Chris is the type of guy who could live on meat and two veg- as long as one of them is mashed potato! So that diet is great for his diabetes control. It is easy to do and I have a happy man! 

I ordered lots of frozen veg in packets that you steam in the microwave... and they do potato mash in white and sweet potato.  I usually make a gravy to pour over the vegetables.

With still feeling exhausted with my fibromyalgia flare, I am very appreciative of convenience foods that are still healthy. 

Anyway, with the sugars improving and Chris not so dizzy, I can not only see a light at the end of the tunnel, but I can see better days ahead!

Kissing my phone screen!

Today I have woken up with a little less pain from my fibromyalgia and costochrondia than what I have had the last few weeks. I have a distinct lack of spoons, but I will take less pain over spoons any day!

I have dishes to catch up on and washing and cleaning to do, but I am letting it go one more day. Today the Victorian Government has lifted the lockdown a bit and allowed us to go see family,  as long as there are no more than 5 people at the one time.

So we are getting ready to go to see my youngest child, Dianne who I wrote about in my other blog yesterday.  She lives an hour's drive from us. No doubt I will fall asleep en route to her place. That's totally normal for me and Chris is used to seeing me nearly being garrotted with the seatbelt on long drives...

Schools in Victoria are gradually returning in a few weeks. I never thought I would say this, but I miss the mums taking their children to school and even the school buses! 

Life  is gradually returning to some semblance of normal and I am very happy about it. Online classes and visits with family are OK, but nothing compared to face to face! 

Mind you, we are still going to be careful. Lots of hand washing still and today, lots of theatrical kisses without actually kissing. A big Mwah each side of the cheeks at a respectful distance will have to suffice. But hey, it's better than kissing my phone screen on FaceTime! 

The spoons can wait

So today I woke to a few more spoons or energy than lately. I am very grateful for that. I have a few things I want to do with them. 

But much as I want to accomplish my to do list today, I have a phone- or rather an ipad date with my little granddaughter after she's finished her online school lessons.

Like most people today who are in quarantine, I am missing my grandchildren, so needless to say, I am looking forward to speaking to and seeing her today.

The few things on my list today are to make pumpkin soup, some mini quiches and a shepherd's pie for dinner tonight.

I don't know how many spoons that will take me, especially after a lively chat with my little one, but I don't care: what gets done, gets done- what doesn't  get done can wait till tomorrow.

My spoons may think they dictate my life, but they are wrong. I will live it as I please! The spoons can wait! 

Calling in my spoons!

It is 14C or 57.2 today which is good weather for being busy. I need to devote today to saving my produce and freezing it and cooking. 

I have bought too much fresh produce and I am not getting to use it before it goes limp. In my crisper are 2 bunches of celery, 2 leeks, 3 halves of pumpkins, 3 lettuces and 2 packets of carrots. Even by making some soups, I will still have too much. The veggies are not mouldy or brown but definitely not crisp- they are limp. 

I will freeze lettuces, celery, pumpkins and carrots and the two bags of brown onions expiring there as well. I have been obviously buying up big in the produce to try to stockpile a bit, but it's all going pear shape! 

I really can't afford to waste my money by throwing it out. I have to freshen them up and prolong their life.

I plan to make some  butter tarts, some sultana muffins, some cookie dough that I can freeze to use on the days when fibromyalgia has me snookered. I will be taking out some lamb steaks to thaw for dinner tonight, which will be steak, mashed potato and peas and gravy.

Mostly it will be a kitchen day today, as long as my spoons allow anyway.  I am sitting here calling in my spoons! 

Home is the new church

So today is Resurrection Sunday when Jesus rose from the dead. It is a joyful day in the Christian calendar and one I look forward to each year.

I am so grateful that Jesus saved me from my sins and that when I die, I will be with Him for eternity. That is a wonderful promise to hang onto in these uncertain times.

This year will see many of us viewing online Easter services and I will be doing that later, but today I will be taking Communion with my sister and one of my sons online. We will be FaceTiming.

We did this last week and it was very fulfilling. What better way of celebrating Resurrection Sunday than by worshiping and remembering Jesus Christ's sacrifice for us all?

I have some homemaking chores to do:

1. Make pumpkin soup
2. Fold a load of washing and put it away
3. Clean my kitchen

I will get to this hopefully after Communion today. I will be taking it under our picture of the Last Supper where Christ introduced Communion as a way for Christians to remember His sacrifice. 

It's quite pleasant to be home doing it: like other things we have to accept for the time being: home is the new church! 

Staying busy

So in the wake of the Corona Virus comes anxiety and uncertainty and I have been finding my adrenaline racing. With listening to too much news, I am inclined to get depressed and so, I am staying busy. Well, as busy as fibromyalgia and spoons allow.

I am finding by keeping busy that my mind slows down and this brings my blood pressure and heart rate down as well. There is less adrenaline pumping through me. And less angina.

My friend, Mrs Sylvia Britton of Christian HomeKeeper is a very gifted writer. She has blessed me so much with writing her Lists for the chronically ill woman. I follow them most days and they have helped me so much for many years now. 

Sylvia graciously allowed me to post her Lists here and on my other blog and I am eternally grateful.

Recently she has written a post which is so very helpful for us concerning coping with isolation and the Corona Virus.  Once again, she has graciously allowed me to share this with you. Thanks again, my friend.

Sylvia's advice is always scriptural and sensible, and I have found a sense of peace since staying busy.

So today I have:

1. Done a load of washing
2. Put it away as well as a load I found in the dryer! :)
3. Cleaned my kitchen
4. Made some Jewish Penicillin 
5. Roasted some chicken drumsticks for dinner
6. Sorted out our medications for the week
7. Watched Episode 7 of The Chosen  very moving... 

Highly recommend watching it.  He is our Hope and I am so grateful to Jesus for His sacrifice, His salvation and His grace to me.

My body is hurting with the fibromyalgia flaring, but I would prefer that to sitting fretting about Rona. 

I really think the answer to anxiety sometimes is staying busy.

Doing it my way!

So thanks to fibromyalgia making my life from day to day so unpredictable, I can't keep to a homemaking cleaning routine.

I simply don't know how each day is going to be until I wake up. It's unpredictable. Only in the morning (which usually is not a good time for me), will I know if I have any spoons (energy) or not. 

A lot of course depends on whether I was able to sleep well or not. Because most of the time I toss and turn and don't get much relief from pain even in sleep, I wake up feeling like I have been hit by a truck.

So in the 51 years of being a housewife, I have learned a trick or two about getting it done. And by getting it done, I don't mean perfectly: I mean good enough to keep us comfortable and healthy.

Perfectionism went out the window 22 years ago when Fibromyalgia joined the 'Ailments Club' along with life time members- Angina, Arthritis, Asthma, Ankylosing Spondylitis, Spinal Canal Stenosis, Diabetes 2, Hole in Heart, Polymyalgia Rheumatica, Depression and lastly but by no means least, a torn Meniscus in the left knee. Oh yeah: and Heel Spurs. 

But I digress: I have learned a few tricks along the way for that rare day I just may have some spoons.

Here's a few tricks I have found along the way to help with housework.  You will see it's not very orthodox, but's it's effective and I like doing it my way! 

She's such a diva!

So I brought a cup of tea in to Chris this morning and found our Xena with her head on his arm and fast asleep. Chris pats his arm and she comes up and lays on it. Chris then covers her up.

She normally sleeps beside me or nestled on my legs, but her preference is to sleep in the bed with us.

I grabbed the phone on the bedside table and took a picture, by which time she had woken up. She knows I like to come back to bed to share a cuppa with her daddy, which displeases her somewhat.

Here she is giving me The Look which says do not disturb us. She thinks she owns our bed! When Chris comes in at night when she and I are both asleep, she miaos at him because he disturbs us. And he apologises to her!  She not only rules the house, but she's such a diva!

I have to make the cookie dough today as I ran out of spoons yesterday. With the weather change: it's raining quite heavily- my fibro is flaring so I am not sure if I will get to do this today. We will see.

So on my list today is:

1. Fold a load of washing
2. Make cookie dough to freeze
3. Cook rissoles for tea. Having with mashed potatoes and veg and gravy

A neighbourly thing to do.

So I did my grocery shop online yesterday. Sadly, they were out of stock with sugar. So Chris and I went to the supermarket to get that and some other essentials like milk (out of stock) and bread.

No white sugar at all... just dark brown. So there I was thinking all was well with my stocked pantry, only to find I have one small canister of sugar left.

We put out the call to local family and fortunately for us, they have plenty and are willing to share. They are going to leave some for us on our front porch.

Whilst the supermarkets were restocking the shelves, Chris told me that they were unpacking unessentials. All the essential stuff: toilet paper, hand sanitiser, milk, bread, flour and sugar weren't available.

Chris went in by himself and I sat in the car as it's silly to have both of us go in for a few things.  Besides, I was saving my spoons for today. I have some household chores to clean up and it is a race between detemination to get it done and my spoon swallowing flare of fibromyalgia.

So on today's list is:

1. Folding more washing and putting it away
2. Doing last night's dishes and this morning's as well
3. Making some mini quiches to freeze
4. Making cookie dough also to freeze

I think that will be it for today for my spoons and definitely it will be it for my sugar. Such a small thing until you run out of it. Now I can obviously see that lending a cup of sugar is a neighbourly thing to do.