Having patience with yourself.

  

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

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

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

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

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

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

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

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

Planning already

This year because we finally have a larger home, I am hosting Christmas Day lunch.

As always, I need to plan and pace myself because of my chronic fatigue, so I am looking into buying my foods and gifts early.

Currently I am investigating if I can freeze a joint of ham and one of pork. Also, what type of ham is the nicest to buy?

I know I am going to have a fibromyalgia flare by Boxing Day, but it will be worth it to have some good memories.

Sometimes you just have to push yourself or you never do anything. I am looking forward to it! But to minimise any major flare after Christmas and leading up to it, I am planning already!

Between my nana naps!

 

Today is Saturday morning here. I have had a busy week with doctors appointments and physio for my daughter who is doing really well. 

My son had a possible cancer in his bowels, but the first test was a false alarm and to be honest, it made me anxious. I didn't realise how anxious until he was cleared. 

This son was born with a forceps injury to his eye- it looks normal but he has very little sight in it. He has developed a pterygium or sun damage in his good eye and has surgery next Friday to remove the growth because it is growing across his eye and may interfere with his vision. I will be glad when it's done and his eye has recovered. 

All this has given me the Mother of all Flares. My fibromyalgia is killing me at the moment and I am taking frequent naps to cope with it. I have a few housework chores to do and some folding up of clean washing. I will do it- in between my nana naps! 

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. 

I am too tired to shout!

Today is Monday morning. I have to do some washing and restack the dishwasher. I have run Sadie the Roomba and am about to do bloods, meds and breakfast. 

Later on at 11 a man is coming to do some flatpacks of furniture for us. I am hopeless at this and Chris can't do it anymore. It's a coffee table and TV lowline unit. It's $40 an hour but we had to factor that in when we bought them. It is what it is! 

At 2.30 we have to pick Dianne up and take her to a doctor's appointment. Then I have to go to the chemist and get her meds made up. 

It's supposed to rain for the next 10 days and the rain has been consistently heavy and constant. I think we are going to need an ark soon.  It is making my fibromyalgia worse, and I am pushing myself to get Di to doctors and physio. 

I will neverthless be busy with doctors and physio for the rest of the week and possibly next two weeks or more. I am glad Di's knee has been done though. It's all over bar the shouting! With no spoons at all, I am too tired to shout! 

Out of my comfort zone.

I am so exhausted right now. We have just moved house and as expected, I have welcomed a new fibromyalgia flare.

Having fibromyalgia for 23 years, I knew it would end like this, but in life some things are unavoidable and you just have to go with it.

So I sit here writing to you, trying to wind down enough to actually fall asleep. I have succeeded in making the home functional but there's much to still be done.

It will have to wait until tomorrow. As long as I have clean clothes for tomorrow and some clean cups and plates, it will have to suffice.

I hate moving so much, but I do love the house we have moved to and I am hoping the next tenants feed the birds and stray feral cat who comes to dine. I will miss them.

Wednesday I need to go to our doctor, so we will hand the keys in to the real estate then. Then they can inspect it and show prospective tenants through.

It looked lovely after the cleaners had been yesterday and the carpet cleaner's spray was perfumed so nicely. It was hard work for me to get to this point, but as I said, it was necessary. 

I cleaned and packed like a pro and we expect to get our bond or security money back with no problems. My muscles are so weak now but I think the results of my effort should pay off even though I was out of my comfort zone. 

 

On a wing and a prayer

We have been busy looking for another home to rent. It's been a nightmare. There aren't many homes to rent and when we apply, we are vying with about 20 other people for the same home.

Most days we have to go to look at these houses and as we are in the country, it is at least an hour's drive each day. I am exhausted.

So much exhaustion is hard to take, especially when it brings on a fibromyalgia flare. But as in lots of things in life, it just has to be done.

I think the most stressful part is actually securing a property to move in to. The actual move is not so bad, and this time we will be paying my grandson to help us move.

With the fifth wheel and tow vehicle sold, we are in a position to get someone to do the move for us and it's especially important with our failing health to enlist help this time.

We are going to miss the birdlife here for sure, but with us being in our 70's, we have decided that we need to be closer to family and hospitals if we have an emergency.

This house is old and has no insulation and is incredibly cold and it's our winter now. With the price of electricity going up on July first, we won't be able to afford the heating in our all electric dwelling.

We are feeling the cold and are looking forward to ducted heating again.

Today there's no house viewings as it's Saturday. I have used the time to catch up on washing and I have two slow cookers going with different meals in them.

I am contemplating using Prednisolone for a few days so that my neck and jaw pain (TMJ) abates. I don't know if it will help my muscle pain in my shoulder and upper pain, but it can't hurt.

Today is the first day for awhile that I have been able to post as my muscles feel like they're tearing. But I just wanted to touch base and tell you what's happening in our part of the world at the moment.

Next week is another day of house hunting and tonight I feel like I am running on a wing and a prayer.

 

It was a good day!

It's Monday afternoon here. I have cleaned my kitchen and done a load of washing. My step-son and his wife came and checked out the fifth wheeler we have sold. We can't even get up in it anymore.

She made the bed up again like in the photos and step-son vaccuumed the floor. It is so nice and the buyer is going to be getting a bargain. He plans to use it as a static van to live in on his property. He's been on the phone organising a transport company to get it for him. He's interstate. 

Hopefully, it will be gone by the end of the week and our bank account will look a lot healthier. Next we will be selling the tow vehicle and buying a new car and moving. So that's what I am doing this afternoon: looking at home rentals. 

I am cooking pork BBQ ribs for dinner. Yet with only a few things on my list of things to do, I am incredibly tired..thanks to fibromyalgia.

Yesterday was Mother's Day and Chris brought me a cup of tea this morning and said Happy Mother's Day. I said I aren't your mum and he replied but you mother me!  So cute. I giggled.

Each of my kids rang me so all in all, it was a good day! 

Making the most of my spoons

So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.

 

Our little haven

 

So yesterday was a day of horrible fibromyalgia pain and fatigue. I felt a little down so I came to my couch and sat next to Chris for a cuddle and rest. 

We love feeding the birds that come into our back garden and all through the day, our garden is like an airport. Birds of all types come to dine and drink and it is so restful and fun to watch them.

They have their own little antics and natures and they can be quite amusing. And apart from watching their different natures and antics they have something else that we find very attractive: they have babies.

It's such fun to watch the mothers feeding their babies and to watch the babies venture further and further from her as they learn to feed themselves. They fly but are still juvenile and yesterday their mothers were distancing themselves from their chicks and refusing to feed them, much to their annoyance. 

The magpie juveniles are especially raucous and squawk even with food in their mouth. They are almost always feeding. The minor bird mummy also is weaning her chicks from her and as soon as she moves away, they follow like the duckling family juveniles do. So fun to watch.

But by far, my favourite birds are the Kingfishers which have also had babies. Whilst laying on the couch, I can see outside and I was delighted to see a mother Kingfisher with one of her three babies on our garden swing.

They were watching the porch which was covered in birdseed for the galahs and rosellas. I had thrown out some cut up luncheon meat, and they were waiting for the magpies to vacate the porch so that they could dine. Kingfishers are shy and besides, magpies are three times their size. So they wait.

It is the season for little white cabbage moths too. They are flying around the agapanthus plants and I guess they are mating because they seem to be in pairs. As are the pigeons that come for the seed.

There are three that regularly call in and partake of the parrot seed on the ground. There's a little female who just wants to eat, but there also is an amorous male who has romance on his mind. He pursues her constantly and hopes to make her his by dancing for her. 

He fans out his tail feathers and hops towards her, then takes a few steps back. He repeats this courting gesture until she tires of him and runs a few feet away. But he is insistent and pursues her over and over again. I hope that he wins her heart as it is such fun to  watch the young birds as they leave the nest under their mothers supervision.

We have a bird bath/feeder in the back garden which we used to fill with seed, but now with torn meniscuses in both knees, I cannot get down the steps to fill it, so they get fed from the back sliding glass door. I just toss the food onto the back porch. They don't care where it is. 

They are quite used to me now and I have them almost eating out of my hand. So much so that as soon as I open the door, they come flying in to the garden from all directions, calling each other.

We have water in the bird feeder and in a plastic container in front of the steps. They bathe and drink and sing and they enjoy our back garden as much as we do.

It's a lovely place to recoup one's spoons during a fibromyalgia flare. The daily scenes are so peaceful and we love our little haven and we know the birds think of it as their haven as well. Their constant visits and frequent broods of chicks speaks of a place of plentiful food, water and safety.

We are grateful God lead us to this little country town- it is a gift from Him: our little haven

I just have to pursue it.

 So with a horrid year last year, I was quite happy to see the end of it. I messaged my friends and family and wished them a happy new year, then turned my phone off and went to bed.

It was only 11 o'clock, but I was exhausted and had no spoons left. The weather was really warm and I decided to forgo my electric blanket. With the help of a Tramadol, I managed to quell my fibro and back pain and soon fell asleep.

I woke up at 2am and realised that it was January 1st. Not that it makes much difference what year or day it is- for Chris and I one day is much the same as another. We stay home mostly.

This year, I am training myself to live in the moment. That's all we are promised anyway. I have worried about what lies ahead this new year, but I am going to stop thinking too far ahead.

I plan to read more of the Bible and saturate myself in uplifting read and videos. I am going to try to live with hope and not dwell on negatives.

The eternal optimist, I am going to believe that I am going to have less fibro pain and get more done. I mean, if one thinks only of horrible things it will ensure that I just exist and don't live.

I don't want to endure next year, but enjoy it. It's a big ask, but it is possible. I tell myself it's possible to live an abundantly happy life in spite of pain. I just have to pursue it. 

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.

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.

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. 

Finding beauty in a horrid day

I had trouble waking up this morning. My fibromyalgia has made me feel like I have been run over by a truck. However the day has not been a total loss.

I did a load of washing and now have to put it all away. I am not sure if I have enough spoons left for that because I also washed a whole stack of dishes and I am not sure if I have enough energy left to cook. 

I am still in my PJ's. I just might need to take a nana nap or rest at "the beach" so I can recharge. We will see...

The weather has been nice today and I left the back door open and listened to the birds and the stream running. The sun was shining on the water and the birds were calling and coming down to eat the seed and watermelon I left on the back porch for them.

It's important to try to find something lovely in every day, no matter how bad our fibromyalgia is to bring a balance of goodness and beauty in an otherwise horrid day.

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! 

 

Making better use of my spoons

 

With limited spoons (energy), I have to be more mindful of my time on Face Book.  FB is a useful tool for keeping in touch with relatives who may or may not bother to keep in touch with us. This saves on phone calls as most of Chris's family are in England.

As a chronically ill woman with constantly flaring fibromyalgia as well as other chronic illnesses, I do 15 mins of housework, then I play Candy Crush as I rest. It's a great motivator and a good reward and rest break wherein I don't have to think too much and it helps de-stress me

However, I realise that while I do 15 mins in the house, I often spend an hour or more on Candy Crush or reading memes. By the time I realise that I haven't managed to do what I planned, my spoons are gone!

I find FB often depresses me and when we had the 3 days without power recently, I felt less stressed. So for me, I have learned to use FB and not have FB use me. 

Although you will find me there still, it isn't at all as many times as before. Who would have thought that an inconvenience like a power outage would actually be a blessing? It's taught me how to be making better use of my spoons!