But by the grace of God, go I

As you probably know, I suffer from a myriad of health issues from life threatening to annoying. Each day is a constant struggle to keep my home and look after Chris and myself and our little white cat, Xena.

Recently, I read an article about chronically ill bloggers who use the internet to feed their latent Munchausen's disease  The writer who obviously is not suffering an invisible chronic illness, concludes- falsely that we are feeding a desire for attention and sympathy.

This writer had no medical expertise and spoke with the confidence and freedom of a healthy person who knows nothing of the pain every day brings to us who aren't so blessed. It made me both angry and sad.

Anyone who manages to carry on a relatively "normal" life, sacrificing their comfort to serve and love those closest to them, know that the only thing we really desire is compassion. We rarely take delight in our symptoms, in fact the majority of us try very hard to appear as a healthy person in spite of being in pain and discomfort.

Goodness knows, we suffer so much with people judging us unkindly and this simply serves to push us further into depression and loneliness. Especially when our illness is invisible, like fibromyalgia.

Many of us chronically ill people are housebound for the most part, and therefore we feel a certain amount of loneliness and disjointment from society. We simply want to be respected and allowed to simply exist without the stigma of mental disease in the form of Munchausen's.

We bloggers of chronic illness do so because we know the feeling of disenfranchisement in a social sense. We are stripped of our right to live in peace and freedom from bullying ignorant people. 

Writing for those who suffer like we do helps us to reach out to people who would understand the psychological insulation and the sting of being misjudged and categorised as a malingering attention seeker. 

Whilst it is true that we have the LORD to love us unconditionally, it nevertheless hurts us that people are so cruel and instrumental in adding ridiculous labels to us that demoralise us even further.

Chronic illness and pain is a horrid  way to live and those who cast stones at us would do well to thank God that they aren't so afflicted. God has not chosen them to walk the lonely path of chronic illness and they also would do well to remember "but by the grace of God, go I" 

© Glenys Robyn Hicks

Beloved, I pray that you may prosper in all things and be in health, just as your soul prospers. 3 John 1:2

They're silently waiting for me

Anyone who follows this blog knows that I struggle with washing the dishes. It is a battle that is fought and lost on two fronts: emotional and physical.

The emotional part is owing to the fact that I don't have a dishwasher and the dishes multiply like rabbits and are a continual eye sore on the side of the sink. 

In spite of cleaning them up and being rewarded by not only an empty sink and benches and of course, clean dishes- I find the complete futility of feeling done with them is disheartening.

A terrible procrastinator, I promise myself that I will keep up with them, but illness laughs as it assails me with yet another flare, and they remain on the bench mocking me for being  defeated yet again.

So here comes the other side of this domestic dilemma: being completely out of spoons and suffering from broken knees and collapsing spine. I simply cannot stand.

And of course that horridly wicked ruler, Fibromyalgia ensures that I am in an almost constant flare, and it is the cherry on the top of my cocktail of pain. So not only is my physical health attacked, but also my mental health. It's depressing.

I know I could ask Chris for help, but he has heart failure and battles his own health issues. It has always been me who washes the dishes, and then he will usually come and dry them and put them away. I am grateful.

Until I can gather some spoons I will sit and wait for my Tramadol to work. I plan to clear the dishes up, cook some steak and vegetables for dinner tonight and rest. That's the plan. Meanwhile, they're silently waiting for me.

The cupboard was bare.

                                               

So with chronic illness, one has to find shortcuts and plans that whilst celebrating events, keeps the work involved to a minimum so we don't run out of spoons.

This Christmas, with the mother of all Fibromyalgia flares and hosts of painful ailments all vying for top position, my twin sister and I decided to buy KFC again this year, and make that our Christmas feast.

With her being a Fibromite with Lupus, we planned to buy it to eat as a family for our festive lunch. We had done it before and we found it just right. So the plan seemed sound.

However, it turned to dust as Chris and I travelled to my sister and son's house, looking up various KFC's on our phone. Each website showed it as being closed this Christmas Day! 

We called in to my elder son's home to wish them a Merry Christmas and exchange gifts, and I told them of our dilemma. Straight away, my daughter-in -law called my son to start carving up their enormous leg of ham.

She also gave us a large tray of pasta salad and a frozen dessert suitable for 4 people. They both saved the day for us.

Arriving at my younger son's and sister's, I was informed that her cupboard was bare. She also planned on KFC as our Christmas fare and hadn't anything else available. She was so relieved when Chris came in with the food from my other son. 

We ate lunch with great relish, exchanged gifts and hugs and took Holy Communion together. It was quite special and we enjoyed remembering Jesus's birthday.

Later on, I talked to my son and his partner and told them they had saved our Christmas. Faced with nothing to eat and an empty pantry, it made me think of Mother Hubbard and how she must have felt when the cupboard was bare.

Oh no, no ho ho!

So we had our little granddaughter Taylah for a few days, and picked her up Friday, but it didn't go to plan. After a full day, in spite of me making an effort to play with her and give her my full attention, she decided she wanted to go home. 

She said she missed her mother, and so we made the 2 hour trip each way to drop her off again. Even though I didn't drive, I was exhausted. Even being a passenger is gruelling when you have a fibromyalgia flare, angina, sore back and broken knees that throb with every heart beat.

I had bought a rolling pin with the nativity on it and planned to make Christmas cookies as gifts. Well, I did make cookies as promised with Taylah helping me, but not the ones I planned to give away. They were plain cookies. 

When I told her we had to refrigerate the dough for a couple of hours, she said she didn't want to have to wait. So the Christmas cookies didn't come to pass. 

The Mother of all Flares has come to pay me yet another visit- or maybe I just haven't recovered from the last one. I am feeling so exhausted I could collapse. So yesterday I had a nana nap and went to bed earlier than normal.

I was hoping that would do the trick and give me some wind under my sails, but in truth I awoke with no spoons. No spoons on Christmas Eve is a disaster!

We were supposed to leave our home around 11am today and visit my children and grandchildren but I felt unsteady on my feet, due to wonky knees, foggy in head due to fibro and hurting so badly with my spinal stenosis that I had to cancel.

Tomorrow we are supposed to see Taylah open her presents, visit my sister and son for lunch and go to my step-daughter's for afternoon tea before driving the two hours home before dark.

Truthfully, unless I have a miracle, we won't be going. After I finish chatting to you, I will be letting the Tramadol work by going to bed to rest. I really want to feel better.

As much as I love my family and Christmas, it would seem that it is going to have to be cancelled. It's a pity but it is what it is! Besides, nobody wants a spaced out whiny woman around them on Christmas Day. And I don't want to her, but unfortunately it's hard with illness to have any ho ho ho. 

No mojo with fibro

So leading up to Christmas, I had my 9 year old granddaughter Taylah, stay with us until Christmas Eve, when she would be taken home in plenty of time for Santa to come.

I promised Tay that we would make Christmas cookies make cubbies, play school, go swimming and have a play date with her cousins. 

Day one started out well and we played school, office workers and shop keepers. I showed Tay how to touch type, taught her a bit of Italian and French in a fun way and then I promptly ran out of spoons.

I simply had to give in to the pain and take some Tramadol to keep going. I made some lunch and felt like I might pass out. Dizziness assailed me and I felt vomity. Probably the Tramadol.

I had to explain to Tay that I love having her here, but am not well and I need to take a nana nap. She got a crash course in fibromyalgia and chronic fatigue. 

She had lost her paternal grandmother last week and was very anxious about me so I didn't want to frighten her too much, so I said that if I don't go to rest for an hour that I would not enjoy her stay because I would be cranky. If I went to bed just for an hour, I would enjoy it so much more, and so would she.

As she accepted this fact, she immediately bombarded me with "but I thought we were making cookies, playing out side and making a cubby house?" I told her we could do all that if I took a nap. She said OK then got her ipad out. I went to bed and allowed the Tramadol to do its magic. It didn't.

No, it didn't do anything except make me nauseous, even after a 20 minute nap. That was all I got. So, I got up, made us all a cup of tea and sat down with Chris to watch a video he wanted to show me.

Taylah pouted and demanded to make cookies, as I had had a nana nap. Groaning, I got up and started taking ingredients out to make the cookies. 

After that, I was too exhausted to clean the kitchen. I cooked dinner and then it was time for Tay to have her bath. That wasn't a big deal as she's nearly ten, but she wanted me to play MacDonalds with her, so I got some wooden spoons and plastic cups for her to play with. 

I sat on my shower stool and bought some Big Macs,"no pickles, no onion and a soft serve cone for my daughter." We blew bubbles with the Imperial Leather soap and I did what Fibromites do best: I tried to hide my pain and pretended to have a good time.

By 9 o'clock I insisted that Tay go to bed and I joined her. Before we went to sleep, she told me she missed her mother and wanted to go home.

In the morning, she assured me she loved being here and she loved me but wanted her mum. I told her I understood and that it was fine. We would take her home. She was humming to herself as she played teacher and when I went to the fridge, I found a love note from her to me.

I was glad as I worried she didn't stay with us longer because I was a boring old lady. And I fear I am. Cos everyone knows there's no mojo with fibro.

Resting my tired twinkle

So I did a thing that stripped me of what little spoons I had. I took a shower and went to click and collect a few Christmas gifts I ordered on line.

I came home and cooked dinner and had a bad asthma attack. I couldn't breathe properly. Chris tidied up the kitchen for me and I sat down for a while until I felt better.

The Mother of all Fibro Flares has paid me a visit. I ache everywhere and feel too exhausted even to talk. It is nearly 9pm here and I am ready to go to bed. 

You just have to listen to your body in times like this. Hopefully tomorrow I will wake up with some spoons.

After 6 months of not seeing my little granddaughter, Taylah, we are picking her up Friday and having her for a few days. I just have to be well enough for that. We have missed each other. Fortunately she is nearly 10 years old, so she doesn't need a lot of care.

I am too pooped to worry a great deal about Christmas this year. We have bought a few things online and that will have to do. Sometimes you just have to rest your tired twinkle! 

Something to remember if we move.

Yesterday's house inspection went well. She thanked us for keeping the house nice and said the owners will be pleased. I am glad to hear that because Chris wants to move closer into the bigger towns when/if we sell the fifth wheeler. I want to move closer to my children if I have to move. I am not keen on moving again. Anyway, we will have a good record as tenants if we have to move.

I have arms that feel like they're made of lead today. Fibromyalgia. I did our online shop again and it's due to be delivered this afternoon. It's the easiest way for us to do it these days. I have some dishes to wash from lunch and breakfast and I will probably have a nana nap to be able to cope with cooking diner and putting the shopping away.

Lately I've been spending quite a bit of time in bed. It usually doesn't get made much for that reason. But with it looking nice yesterday for the inspection, I decided to take a snap of it. Something to remember if we move.

A merry little Christmas

                                                

We are waiting for the real estate to carry out their 6 monthly house inspection for our rental. There won't be any problems. We love our home and have a lady come do some cleaning every two weeks. Just the stuff like vacuuming and mopping that we can't do anymore. 

I have washed all our bedding over the last few days and stored our doonas away because we are now in our summer. Next week I will wash our pillows.

I will be making some sugar cookies to try out my Christmas nativity rolling pin. The cookie cutters came yesterday. I want to get the dough right before I make them up for Christmas gifts. If  our little granddaughter is here before Christmas Day, I will let her help. She loves being in the kitchen and I let her cook or bake. 

Our doctor is going to do a phone consult for us this afternoon. It's mainly for prescriptions but I need some advice on meds for Chris's fluids. His feet are swollen like balloons. (He has heart failure) I could have gotten in to actually see the doctor this afternoon, but Chris won't go, so I settled on the phone consult.

I put our little Christmas tree up and hung a wreath on the door..

Just taking things quietly each day.  With another flare of fibromyalgia, it's enough. Like my 18" tree!  We are going to have a merry "little"  Christmas.

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! 

My four tasks of homemaking

With severe Fibromyalgia and fibro fog, I find making lists helps me focus on what needs to be done each day in my home. I love following Legacy of Home blog by Mrs Sharon White and I have adapted her daily lists to my needs. On bad days I follow Sylvia's Lists. Here is my list. I hope it helps you too. 

WAKE UP: BLOODS, JAB AND MEDS FEED XENA

1.  There is the breakfast hour, which includes tea-time. First we prepare the meal and set a table.  I often set up a tray- table and sit in the parlour before anyone else is awake.  I am an early riser so I have my tea while the sun is just beginning to rise.  I enjoy this quiet time of resting from the brief bit of morning work.

Later, when the family has their eggs and toast, or fresh baked muffins with fruit, it is time to do the dishes.   We wash the table and the counters and do the sweeping.   All the work of tidying and making things neat are part of the breakfast duties.

2.  Often, during the morning hours, we do the laundry or the dusting and vacuuming. Each day has its special work. It may be Wednesday is for washing floors. Perhaps Thursday is for cleaning the bathroom.  The mid-morning hours are a good time for many of us to do these special duties of making a home look pretty. LIST WORK FOR THE DAY

3.  The Lunch hour is such a wonderful time to stop and rest.  We put out a fresh, clean tablecloth.  I love my white-and-teal checkered cloth.  It looks so homey and old fashioned.  We can set up our plates and napkins. We can do this even if we are just serving grilled cheese sandwiches, pickles, and chips!  It makes the lunch - work like a reward when we sit at that pretty table and rest and eat while we enjoy the family.  Next we do the sweeping and the dishes, much like we did in the morning.

4.  The dinner hour is such a precious time in the day.  I often start working on the evening meal at 3 in the afternoon. I work slowly and take lots of breaks. Sometimes I peel potatoes and start getting a little casserole ready to bake.  Other times I might do much of the work for a pan of lasagna. I like to put these pans of prepared food in the refrigerator and then just take them out to bake when it is just about dinner time.  That way I get a great deal of rest between all the work. CLOSE BLINDS LIGHT LAMPS  BLOODS AND JAB. MEDS AND MILK

Sitting with the family and hearing the blessing (or the prayer before the meal) is such a peaceful experience.  It is lovely to just sit and enjoy dinner at the end of a long day.  Then the work of tidying, doing the dishes, and sweeping the floor happens.  We make everything look neat and pretty. But I do not like to rush.  I do not want to just "get the work over-with." I take my time and go at a steady pace.  The work of cleaning and accomplishing the beautiful work of making a neat home makes me happy.  It also brings peace. .  Bathe or shower

These four tasks of homemaking do not take a great deal of effort.  They may seem simple and ordinary.  They may seem mundane.  But if we dress up in something pretty, wearing an apron, and keeping our hair up in a pretty style, we may find ourselves enjoying the work.  I have an old blue-and-white gingham apron that I love to wear. It is getting old and ragged. I will have to make a new one this coming fall.  I need a fresh supply of lovely aprons to wear as I do the housekeeping.

When we look extra nice as we do our work, we can find joy in the labor.  Doing the little tasks of keeping house, each day, with a feeling of contentment, will bring a true feeling of comfort and happiness to the family.  It will help them feel welcome and loved in a happy and simple home. adapted from Mrs Sharon White of the Legacy of Home

So glad I made that phone call

  

So last night I slept soundly. I had good news that alleviated a few of my worries.

After a couple of months of  my antidepressant being unavailable, I decided to do some investigations of my own.

Firstly, I did a Google search on shortages of Dothep 25mg and was lead to the website of AlphaPharm, the company that make and distribute the pills. There was a number to Customer Service so I rang it and the consultant told me that they would be in Australia and at Chemists by 15th December this year.

Naturally I was overjoyed as I had been thinking that I would have to start weaning myself off them or go on another tablet. I didn't want to do that because it was hard finding one that worked and it has worked well for the last 30 years.

Anyone who suffers from depression will know that once you tinker around with your meds, it can come crashing down very fast and the climb back up is very very long. And unpleasant. I didn't want to go there.

Of course it would have been worse for me because of the constant flares of fibromyalgia. It's difficult enough to cope with them when I am on my tablets. I didn't want to find out how bad it would be without them.

Happily, I won't have to now. I rang our chemist with the good news and he and I are so glad I made that phone call. 

Fibromyalgia is a wicked ruler.

So yesterday we went to see our daughter after lockdowns were lifted. The weather was beautiful and we bought some fish and chips for lunch and we ate them in the car overlooking some water. It was lovely!

We haven't been out socially for about 4 months, and it was a real novelty to keep on driving with no restrictions. We had a lovely cup of tea with our daughter and caught up. 

Driving home, we took the long scenic route. It made us feel glad to be alive. Last night, I slept like a baby but unfortunately woke up in top of the range pain. It's going to rain.

Fibromyalgia is such a wicked ruler. It can come and bite you on the heel, just  after you've had a lovely and special time. Maybe it was sitting so long yesterday, maybe because of the changing weather. I don't know. All  I know is I have another fibro flare.

Sitting here typing and in pain, I have come to realise that in spite of knowing that fibromyalgia will rear its' ugly head the next day, it's important to keep living.

The only alternative for me is to stay home permanently and wrap myself in cotton wool but be miserable doing it. I don't want that to happen.

So I will put up with rebound flares after using all my spoons if it means that I have a life other than that of an invalid. I am more than that.  I want to have episodes of pleasure in my life no matter how brief.

I need to make memories and keep in contact with my family. I will overcome it, even if fibromyalgia is a wicked ruler.

Things on my to do list are just basics today. Dishes, cooking and resting.

Choppy waters ahead

Well our day is still in full swing. I have dishes to do and clean washing to fold up and put away. We went to the chemist and picked up prescriptions yesterday. Apparently there's a world wide shortage of one of my anti-depressants, Dothep 25 and I am on my last script. I have been waiting for 2 months for some.  The Dothep anti-depressants help me with my fibromyalgia pain. I hate to be without them.

The practice of keeping extra meds in case of emergency has paid off for me. But I will be out soon. That's a worry as the sea gets very choppy when I mess with my anti-depressants. I think they are in a container somewhere on their trip to Australia.. Apart from those few tasks, and cooking,  that will be all I can manage today. 

I am praying that I get those anti-depressants before I run out or there will be very choppy waters ahead.

Coming to terms with it

Fibromyalgia is flaring and my spoons are scarce today, so it's just basic home duties for me.  Dishes, washing and meals.

If I can get down the steps today, I want to sit in the garden swing. I need the fresh air and relaxation that watching the birds brings. They are getting quite cheeky and tame now. I only have to open the door and they converge on the back porch/decking chirping at me to get them something to eat. 

They stand there practically with their hands on their hips, feet tapping: why are we waiting? Quite funny. I know they case the house out- I see their shadows on the roof and carport. I will miss this place. Chris wants to move back into "civilisation" when we sell the fiver. With Covid, we haven't had any chance to get people here to see it. 

As with coming to terms with the knowledge that my fibromyalgia and other issues will not get better, so I am trying to come to terms with missing out on country life.

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.

Keeping my wheels turning!

 

Good morning. It's a new week! We have to go out today, just some grocery shopping and a trip to the post office. That will be before I tackle last night's dishes. 

I was so tired last night that I left them, hoping to wake up with some spoons (energy). That didn't happen so the grocery shop takes priority today. 

Some lamb chops are defrosting for dinner tonight. I will do mashed potato, vegetables and gravy with them. A sandwich will suffice for lunch. 

I use the frozen mashed potato, steam packs of vegetables and instant Gravox gravy. I am fortunate in that Chris loves meat of some sort with two veg and if one of them's mashed potato, he's a happy man.

Being able to go without peeling potatoes and shelling peas is a godsend for me. The arthritis in my hands, the torn knee caps and spinal problems make standing to cook to prepare a nightmare. I am too short to sit on a chair as I can't see over the benchtops properly. 

When in a fibromyalgia flare like today, it is just the icing on the cake. It literally tips me over. The pain is incredible and never lets up. I do have a high pain threshold but when the pain is 24/7, it wears you down.

I think I will make myself a cup of tea and take some painkillers. That's the only way I will be able to function today. They can join my other ten tablets taken this morning. I swear I rattle when I walk.  It is what it is!  But hey, whatever keep my wheels turning!

It changes you, man!

So I have been feeling a little on edge lately. My fibromyalgia flare has returned with a vengeance. I haven't been sleeping well.

With an ongoing feeling of malaise, body aches and a constant headache, I find I cannot abide much noise. The TV up too loud leaves me clenching my jaw. Even the constant click of my rusty torn kneecaps as I get up and walk somewhere drives me insane. 

I want to lock myself away in a silent world. Not forever, just for a while until the flare passes. If ever. You get to feel like this is how the rest of your life is going to be and it aint pretty.

For the moment, I am being selective about what I listen to... too many decibels are actually painful to me at this time of the Mother of all Flares. Likewise, too much light hurts my eyes and makes my headache worse. 

It's something you wouldn't expect to have happen unless you have fibromyalgia. Nausea, light, cold, heat, pressure on skin, itching all over, hives, dry eyes, crusty nose and dry lips all vie with the noise to  reach a climax of sensory overdrive that gets unbearable. 

So, the answer to the picture here is yes, I have and I would make that annoying toy take its' last squeak. It is something I can control. And goodness knows, there's not much a Fibromite can control these days of flares.

I will hunt and pursue the droning fridge, the dripping tap, the ticking clock, the loud TV and even the squeaking toy on days of Flaring. They will cease and desist. Even if I have to shoot them sky high. Because some days, squeaks and drips are intolerable. I hunt them to survive, and I feel ruthless, for it changes you, man! 

Take me as I am

Over the course of a 57 year old friendship, I have always made sure my house was clean and presentable when Ann came.  Not that she was judging me at all- it was just how I rolled.

Once fibromyalgia came to overshadow me and steal my spoons over the last 22 years, she and I made a pact that we would visit each other no matter what state our home was in. Or else it would never happen.

As we grew older, we realised that things like neat houses sometimes were very scarce, and we agreed that visiting each other was too important to us than worrying about our homes' presentation. So we chose to each be hospitable and not worry about the extraneous.

Since developing fibromyalgia, I have had to rethink my own standards of cleanliness. My standards now are in order of priority and are non negotiable:

A clean body. 

Clean bed.

Clean clothes.

Clean dishes and kitchen.

Clean toilet and bathroom.

With no spoons during most days of a flare, it has been imperative that I reassess what's truly important in my life. God, family and friends were an easy choice. But not just any family and friends, I prefer kind,  like-minded people like Ann, who just takes me as I am.

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! 

  

Bathing in it

 

So, I have really had a hard week of it. I am physically and emotionally spent and it's all about the ravages of Covid in my family.

Firstly, we have had pleas of vaccinated family and friends to take the Covid vax ourselves. This is not going to happen unless our backs are up against the wall. We have spent a considerable amount of time defending our reasonings and copping flack for our choice.

The government is getting more strident in its call to be fully vaxxed and more and more punitive measures in restrictions are coming into play. So much for vaccination not being mandatory: it is really.

My adult children have decided to get vaxxed against my advice and  so has my teenaged grandson. It is their and his parents call I guess.

Then yesterday my grandson got his second Moderna shot and ended up in ER with heart palpitations and fast heartbeat. He is now home, but they said it was a reaction to the shot. He's doing better today.

Furthermore, his paternal grandmother in her 70's developed a deep vein thrombosis two weeks after her  Astra Zeneca jab. But the hospital denies it was the vax. Of course.

My son has been double vaxxed and he and his partner have tested positive for Covid. The only non Covid related whammy for me this week was my other son succumbing to his back injury and being too afraid to go to hospital because of the chance of getting Covid as well. He hasn't been vaxxed.

Chris and I both have existing health issues that need a specialist's input before we are to consider it. So says our doctor. Otherwise we could get an exemption, but would still be limited in our freedoms and seen by the general public as a threat.

All this has ended up with a major fibromyalgia flare which is exacerbated by arguing our case with newly vaxxed family preaching vaccination benefits at us with evangelical zeal. It's all too much.

So today I am not answering phone calls but am going to try to rest as much as I can which should be easy with the measly amount of spoons at my disposal today. 

I want to not think of Covid and vaccinations at all, but I want to take a Tramadol for my considerable body pains and maybe go back to bed.

But first of all, I am going to boil the kettle and make a really large cup of tea. This should help the Tramadol work faster. Tea always is welcome for me and during a fibro flare, it is invaluable as a comfort drink and pick me up.

These days, the only problem with that is that I can't find a big enough cup to satisfy my thirst and tea cravings. To be honest, at the moment, I feel that I not only need to drink tea with gay abandon, but would love to be bathing in it.

They have me well trained

So yesterday was a lovely day. I got up and was making breakfast when I heard the familiar song of the kingfisher calling me. He was sitting on the back porch and was waiting for me to feed him. They have me well trained.

So I grabbed a piece of bread and quietly opened the glass sliding door and threw some pieces towards him. He swooped on it before it had hardly hit the ground, and flew off.

Soon some magpies came a callin for a feed and I grabbed my phone and took a video of them to show you. The mother magpie was joined by her baby and later on the father came with another baby and Mother started feeding him as well.

I know I have told you before how much I love this place, and it's days like this that make me happy. We have just signed another 12 month lease to rent this home and I couldn't be happier.

There's nowhere nicer to recover from a fibromyalgia flare than here. The sun comes around to the back of the house and hits the couch where I like to lay. With just the wire door closed, the sounds of the birds and the stream running in the background, all bathed in warm sunlight, creates the same feeling as lying in the sun at the beach. In fact, Chris and I call it "the beach"

Usually we have a wide variety of rosella, parrots, galahs and corellas come into the yard for the parrot food we put out in the bird feeder for them. But it's been out of stock at the moment because of Covid shortages, so we haven't seem a lot of them recently.

Nothing goes to waste in our house. It all goes out to feed the birds. And they are very grateful. They sit and call for me to feed them and then after they have their beaks full, some of them linger, do a little dance in a circle and almost curtsy to me. 

So I think they are grateful that we are attentive to them and feed them on cue. I love them- and one thing I know for sure is that they have me well trained. 

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.