It's a double whammy!

I am flat out resting today, trying to cope with the pain of a flare of fibromyalgia and polymyalgia rheumatica.

Honestly, it's hard enough coping with fibromyalgia flares, let alone PMR as well. And to make it more difficult it's Easter and there are no doctors available, and it doesn't seem to be urgent enough for ER.

Usually PMR fizzles out after about 5 years, but I have had it on and off for 20, often at first mistaken for fibromyalgia. 

My doctor told me that often it leaves the sufferer with neck and shoulder arthritis, but rarely, it can last a lifetime. Lucky me.

The treatment for PMR is prednisolone but I am wondering if I should take it without my doctor's permission. I have to remember that it elevates my sugars and they have  already gotten higher without it.

After a miserable night's sleep, I took a Tramadol which has helped a little. I took paracetamol as a baseline.. I will most likely have a nana nap soon.

The fibromyalgia is making my knees and back ache and where that lies off, my neck and shoulders and jaw with pounding headache take over thanks to the polymyaglia...

All in all, I am a mess and tired of feeling like this... PMR and fibro are bad enough separately, but this is the worst of all- a double whammy! 

Helping ourselves

 

I need pain relief. My doctor's on holiday until Feb 9 so I had a phone consult with his doctor wife. I told her my pain is currently off the charts with fibromyalgia, polymyalgia and both knees paining me badly. I asked for a prescription for Tramadol but she said for me to wait until he comes back!

Too long to wait when you are blown away with pain. So I am going to take some Prednisolone for a few days. I have some in the house.

How is it that people with genuine pain issues who rarely ask for help, are regarded with suspicion and treated like a druggie? it's not fair... 

Sometimes you have to go against the medicos and do whatever gives you relief.. (as in taking Prednisolone for some relief) People who are chronically ill and in pain have been known to commit suicide... I can understand why- not that I am going to... just sayin'

We are judged so harshly because of those who rort the system and abuse the drugs.. We have to be our own doctor and help ourselves.

Welcome! Come in and lie down!

                                                    

So yesterday we  had plans to visit my son and my twin sister who share a house together..I had been looking forward to it for a while.

When it was time to rise, I didn't feel well enough to go and it was only because I had to deliver some medications that I made the effort to leave the house. My fibromyalgia and polymyalgia were both flaring and my body was missing the Prednisolone...

On our way there, I kept falling asleep, only waking up when the seatbelt garrotted me... I felt weak and disoriented.

By the time we arrived after a 40 minute drive, I couldn't focus and after ordering McDonalds online for lunch, I fell asleep at my sister's computer.

We ate lunch and I still felt like my head was full of cotton wool and my muscles especially in the neck and shoulders were so sore I nearly cried.

My twin and son who has chronic pain issues from a work injury and fibromyalgia, told me to go and lie down in her bed. My sister joined me and my son went to his room, leaving Chris to watch TV and/or sleep.

I don't know how long I was asleep, but Chris came in and asked to go as he was feeling unwell with his high sugars and wanted to go while it was still daylight.

We quietly let ourselves out and took the scenic easy route home...and I slept on and off throughout the journey...

Next week my twin and I will be 70 and they are planning to come to our place. Although I am looking forward to seeing them, I know it will be a shortlived visit.  

Chronic illness in the form of fibromyalgia, polymyalgia and lupus for her, dictate our lives somewhat... in spite of the best intentions, spoons dictate rigidly and always win.

We will eat, they will leave to go home to sleep. It looks very like I will be saying, "Welcome! Come in and lie down!" 

    

             

I find that very relaxing

 

If ever a picture epitomises you and your home and lifestyle, it's this one. A lady dressed sensibly and warmly with knitted socks looks out of the window watching the birds feed from the bird feeder. 

Her cats also watch, but with ulterior motives, mentally stalking them as prey. She has a cuppa in her hand and seems wholely relaxed.

Like our home, she has a blanket over her armchair, protecting it from the cats and adding a homely touch.

I would love to visit her home as I feel like we would be kindred spirits...

Anyway, today is the first day off the Prednisolone. I tried to halve the tablets but they crumbled. So I will be going off them cold turkey. I was only on them for four days...

My polymyalgia is improving but I still have a headache. I have just taken some paracetamol for that.

The Roombas have been run, I have pulled my bed up, done breakfast, bloods and meds and a load of washing which is now in the dryer. The weather is lovely today and I really should have hung it outside. But the PMR and fibromyalgia says otherwise, so I will have to listen to my body and just go with the flow.

I have a couple of pork chops on the kitchen bench thawing for tea tonight. I will serve mashed potatoes and a salad with them.

I am going to take the rest of the day easy as I have to pace myself.. fibro is raising its ugly head again.

Meanwhile, I will sit on the couch and let the fresh air fan me as I lay in the sunshine on my couch for a bit.

From my view on the couch, I can watch the clouds and I find that very relaxing...

It still is that for me!

 

Yep, it's still Safeway for me!  With fibromyalgia brain fog and old age, tell me the new name of a place or person I knew, and it is lost forever... they will forever be the name I first called them!

So I had a phone consult today and the doctor wants to wean me off prednisolone after only four days.. it hasnt really done it's job quite yet, so I am going to spin it out for a few more days ...

Today I have washed some minkie blankets off our beds, ran and then emptied the Roombas, cleaned the toilets and ordered online medicines and groceries.I  did some rounds of crochet in between tasks..

Chris loves bangers and mash so that's what I will be doing for tea tonight..

The Prednisolone fills me with fake energy, but I don't care... I will milk this Polymyalgia rheumatica situation for all it's worth!  I know I won't be long on the meds so I may as well turn the antsy feelings for my good...and get the benefit of some pseudo spoons!  

For those who don't know... in Australia Safeway Supermarkets took on the name Woolworths many moons ago: but as I said, it still is that for me!

A spoon is a spoon!

 

So my polymyalgia rheumatica has kicked in again, and coupled with a fibromyalgia flare, the pain is just excruciating.

I have decided the pain warrants some Prednisolone so I took 25mg of it these last two mornings. It makes me feel a bit antsy but I can now bend my neck, lift my arms to brush my hair, and the pain around my temples and headache has gone, along with the TMJ.

It is risky taking Prenisolone, but I had to weigh up the pros and cons and decided that I simply couldnt bear the pain any longer. 

A happy consequence of it is the fake energy has made me channel it into housekeeping and my house hasnt looked better! 

Today I have run the Roombas, washed the clothes and cleaned my kitchen. I am going to do sausages in the slow cooker for dinner tonight.

The steroids are elevating my blood sugars as I am diabetic. It's making me feel drowsy. I can see a nana nap in my future if the Pred will allow me to sleep.

I really dont care where I get my energy from these days: fake energy from steroids is good. After all, a spoon is a spoon!

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.

 

We have gone mad!

It may seem strange to some, but even in the worst pain, you will find me playing Candy Crush in an effort to distract my mind from the pain.

The rheumatologist suggested to my daughter who suffers from fibromyalgia and pain post chemo, to use it as a distraction from the pain. She was one of these mind over matters kind of doctors. We were not very optimistic to be honest.

As a sufferer of not only fibromyalgia but ankylosing spondylitis, spinal canal stenosis coupled with bad arthitis and angina, I thought it may help me. It helps a little. But Tramadol would be better!

My doctor won't let me have them. Even though he knows I only take them as required for high pain days like today.   He gave it to me when my second knee tore and it helped my fibro pain so much. Then he closed shop!  

I  know there have  been many who abused pain-killers but when  basic pain relief is available only with a chemist's approval such as Panadol with codeine, it makes life more difficult for the person like myself,  to get any relief at all. 

With fibro flaring and another episode of polymyalgia rheumatica, I have been tempted to take some of my Prednisolone, but I am worried about the side effects. I tell you truly, I am feeling desperate.

So even though you may see me playing Candy Crush or online a lot, I can honestly say that it's for  medicinal purposes. I will be a Candy Crush addict any day if it will relieve the pain.

Just don't tell the do-gooders. If they think we are liable to become addicts, they'll make FB take it off their site! You fellow pain sufferers know they will. We have gone mad in our correctness!

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! 

So what's on your plate?

I am trying to balance a plant based diet with red meat. I have a diet full of salmon and other fish, chicken and red meat, with about 50% per meal of plant based food. 

As I am a chronic kidney stone maker and have too much uric acid in my blood, I can't eat too much calcium oxalate. So I can't go on a totally plant based diet. 

When I had the Nutri Bullet/Ninja I drank vegetable based smoothies daily and I had 5 stones in 6 months. The uric acid mixes with the oxalate forming uric acid crystals. So I have to take allopurinol daily. 

It's a delicate blend- the vegetables and the red meats. It's a fine line I walk daily, trying to eat right. I have 120lbs to lose, by the way. Not easy. 

Today I am going to the doctors and I am going to ask him if he can allow me to start my Prednisolone again for my fibromyalgia pain. Also for my arthritis in both knees.

There's only so much you can bear and I need some respite from the pain. Coupled with dietary and weight issues, it's not fun.

Today I am asking how you are doing with your chronic illness and weight. So what's on your plate? 

Like, sure that will work!

As you know, I really love watching the many birds that come into our back garden, and I feed them all the time.

Xena our cat also watches them, but I am not sure what her motives are! Anyway, they have gotten used to her sitting watching them and they eat freely in front of her.

Of all the birds, my favourite are the kingfishers and I always leave a treat for them on the actual porch. The others eat further down near the bird feeder, but the kingfishers always come up checking for treats.

It started out with one brown kingfisher, but now there are about four brown ones and two black and white.

No matter where they are, I have my "love glances" from the LORD. He always causes me to turn round or look up just as they appear. He is so loving and good! 

It is winter here and we have rain which exacerbates my fibromyalgia. So today I am planning on just doing my dishes and cooking. Pork chops with mashed potato and salad are on the menu for tonight.

My knee is still so sore and I feel like my polymyalgia rheumatica is coming back. I am toying with the idea of putting myself back on my Prednisolone. We will see.

With opioids being so restricted and my paracetamol aka Tylenol being practically useless, I am going to try to distract myself watching the birds and taking my mind off it. Like, sure that will work! 

I am very grateful!

I am feeling excited today because I actually feel human. I even have a few spoons! This is so unusual that I feel like throwing a party! 

The Prednisolone has helped me get over my polymyalgia rheumatica and fibromyalgia flares and I am weaning off them. My blood pressure is coming down too.

It probably is because Chris had a good report from the doctor on Wednesday. Fluid in his lungs, on his legs and feet is gone. Bloods are better as are his sugars. Just high BP but not overly worrying.. He's sleeping in bed again... so. very. grateful! 

Those of us who are chronically ill know that stress exacerbates our illness and it certainly was the case the past fortnight. 

I am keeping up with the dishes as I mentioned a few days ago and I am pleased to report to you that they are still under control.

Today I have done a load of washing and I am presently washing and bleaching all my towels as I have been chucking them in the washer without sorting the wash and they are a horrible grey colour.

With the dryer my spoons will not be taxed too much. I am doing roast chicken, roast potatoes, and vegetables for dinner.

An old hand at pacing myself so as not to burn out for tomorrow, I will be resisting the urge to do more than I should.

In the recesses of my mind, I can vaguely remember that feeling of joie de vie that comes with youth and health. It's almost how I feel today. I am very grateful.

Hand over the Prednisolone!

I was too afraid to take the 5mg Prednisolone x 3 tablets the doctor gave me Monday for my polymyalgia rheumatica flareup and arthritic deformed hands...

He said to take it for a week and see how it goes, but I was so scared of the side effects that I wondered if I should avoid it. I know it will raise by blood sugars and I am diabetic. Also, I know it will raise my blood pressure. But still, the pain is rising so much that I really don't know what to do...

I have temple pain with the PMR and I am scared it may go into giant cell arteritis. I had them in my hand that morning, chickened out and put them back in the bottle....

I had a phone consult with my doctor later today and I discussed what was worrying me about taking Prednisolone. We discussed the risks and he asked me to try it till Monday when we both go to see him. My ESR was very high (50) so he is pretty sure it's PMR back again. So this morning I took them.

It's evening now and I am exhausted but feel a bit edgy so I am not in bed yet. I know this will sound untrue, but this arvo I have been able to move my thumb and bend my fingers for the first time in months! I hope it continues...

Twelve hours in, in the midst of this battle with pain, it seems like a miracle cure! I am a new fan. I am glad now that I weighed up the pros and cons as I weighed my burgeoning body.

Unable to hold a cake knife, I shouted to my husband, "Hand over the Prednisolone and no one gets hurt!” as I reached for another piece of comforting cake.

Just keeping my head above water

 

I have copped a double whammy with both a flare of my fibromyalgia and polymyalgia rheumatica.  The pain and fatigue are overwhelming.

No doubt this was caused by Chris's diagnosis of heart failure, my daughter's impending leukaemia specialist test results, my grandson going to prison and the pain this has caused to us as a family.

I am feeling extremely unwell and was hesitant to take the Prednisolone my doctor ordered, but after a phone consult with him today, we discussed the risks v advantages and decided the risk was worth it.

Although I am feeling exhausted, the Prednisolone has given me a high that precludes going to bed for a nana nap. I have just sat up in the loungeroom watching and feeding the birds.

I have a sink full of dishes to do but no energy to do them. The only reason I am blogging now is that I am sitting and it takes very little of my limited spoons.

Recently, adapting to our new normal, our dryer was placed on top of our front loader washer and this has helped me so much with not having to stoop too much with my sore back and hips.

If I was well, I would have hung the washing out to dry as the last few days have been lovely warm autumn days here in Australia. But I have to use the dryer as I can no longer peg the clothes out or stretch my arms above my head.

When I finish talking with you, I am going back to my couch aka "the beach".  I will be doing steak, chips, eggs tomatoes and baked beans for dinner. 

Spiritually I am doing fine, it's just the physical that pulls me down- and I am exhausted just keeping my head above water!

It never rains, but pours!

 

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

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

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

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

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

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

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

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...