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. 

Comfort from my kitchen

The weather has been shocking today and is forecast to be the same for four days. It's been so windy today and last night that I thought our tin roof was going to come off. It seemed to be lifting off. The rain just keeps pouring down with occasional hailstones. I think we are getting some of the tornado that came to Sydney.

I have been suffering from severe fibromyalgia pain, coupled with arthritis in my spine, fingers and knees. I have tried not to go to bed as I don't like sleeping my life away, but I will  have an early night.

Today seemed like the perfect day to warm up with some comfort food, so I made a slow cooker full of Jewish Penicillin.   Not only is it nourishing, but tastes great. I find it so comforting on days like today.

I had planned to do my overdue dishes today, but my spoons were vanishing as fast as my soup. Chris stacked the dishes for me and they are going to be waiting there till tomorrow now. I am planning on taking some Tramadol and go to bed about ten. 

I know I write a lot about fibromyalgia flares, but I think it's just the same long drawn out flare. Maybe this will be my new normal forever! I hate to think like that, so it's off to grab another bowl of comfort from my kitchen! 

Tyrannical spoons

I woke up with high hopes of doing some baking this afternoon. It's been a few months now since I bought a food processor and I wanted to make Chris some sultana muffins with it.

But life had other plans and I had to handle some juggling of bills and made the necessary phone calls and then I took a shower. That's where the day spiralled out of control.

It took me forever to get showered and by that time, all my energy had been sucked off my spoons. I have barely enough to cook dinner.

My fibromyalgia seems to be always there, no longer flaring but constantly making me aware of every movement. Even my eyes seem to ache. Apart from physical torment, it now teases me with fleeting glimpses of spoons that disappear as soon as I flex a muscle. Most disappointing.

So apart from a few dishes washed and sorting out what to have for tea, nothing much as been accomplished.

She's a tyrant, Fibromyalgia. She dictates my days and even my nights and tantalises me with false promises. Ah well, it is what it is.

"The best laid plans of mice and men go awry!" comes to mind as does the scripture that says "a man's heart plans his way, but the Lord directs his steps!" 

So today is not a day for baking. Thanks to my tyrannical spoons.

One leg out, one in!

So today we signed a new lease for another year at our little country cottage. We love it here and if one has to be in lockdown like we are, there is no better place for it. 

Because we have cold winters here, we have bought an electric portable heater with realistic flames like the one we have in our living room.  So as we still have cold days in October, I am hoping the heater comes soon. The cold is the only down side of living in this little cottage. 

With my fibromyalgia, I feel the cold especially and some days I feel like I can't warm up. Sometimes I go to bed with my electric blanket just to warm up.

Anyone who suffers from fibromyalgia know that our thermostat is broken. We act like someone who has a fever: we are hot, then cold, then hot again. It's a conundrum as well as a nuisance. Like so many symptoms of fibromyalgia, there's no real explanation as to why.

I used to think it was because I am on blood-thinners for my antiphospholipid syndrome and stents. That was until I joined a really helpful online group for fibromyalgia sufferers called Fibro Blogger Directory. 

There the other members shared about this and many other fibromyalgia symptoms and I quickly learned that I was not the only one with a broken thermostat who slept with one leg out and one in the covers.

 

Sometimes you have to be your own doctor!

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

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

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

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

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

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

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