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!

It is what it is!

Many of you will know that my husband, Chris is facing serious health issues. He has recently been diagnosed with heart failure.

With fluid on his lungs, he feels like he is suffocating when he lies down, and so he sleeps sitting up in the recliner.

The fluid tablets don't seem to be moving much fluid off his badly swollen legs and feet either. His feet are so swollen that no shoes will fit him.

I was able to buy him some orthopaedic slippers that come apart and are fastened around the feet, ensuring a comfortable fit. They are quite warm as well which is a bonus in our autumn chilly mornings here.

We have many cardiologist and doctor appointments and tests in the coming weeks and  it really effects my fibromyalgia badly. But we keep on keeping on because we don't have any choice.

After a day out for medical appointments, I am usually running on no spoons and that is when Chris looks after me.

He makes me a cup of tea and turns my electric blanket on. He encourages me to rest and chooses an easy slow cooker meal for dinner. I usually cook that on the day whilst we are out.

I allow Chris full reign of what he wants to eat as his appetite is not as good as before he got sick. So you will find us discussing menus the day before.

I do all organising for his appointments, ensure his medications are made up, sort them out for the week and drive him to said appointments if he doesn't feel up to it.

He in return guards my health and makes sure I get uninterrupted sleep as I don't sleep soundly due to fibromyalgia pain.

In line with this, we now share separate bedrooms. Our marriage is as strong and loving as ever, but due to illness we both have found we sleep better apart.

It wasn't what we really wanted, but it is just part of our own new normal. We still sit together watching TV and we hold hands all the time. But with health issues causing insomnia, it is the only way we both can help each other. It is what it is.

When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Proverbs 3:24a

Our home is so nurturing

Yesterday we went to the doctor who doubled Chris's fluid tablets as he has fluid in his lungs. He doubled one of my blood pressure tablets taking the total to 8 different types a day. 

I have fibro fog really bad and forgot to bring the repeat prescriptions we needed to get made up, so we came home and now have to go again today. 

On the bright side, we have been staying home most days and we both are feeling really content with the house we are renting. We both feel the LORD picked it just for us- it is perfect and nurtures us both. 

A lot of time is spent lying or sitting on the couch aka "the beach",  and the big window leading to the back garden is beautifully showing the birdlife. It is like a screen saver- it is never still and always changing with a bird or butterfly passing by. So exceptionally soothing for us both at this season of our life.

1. Today I must do a load of washing
2. Go to the chemist
3. Cook a stew for dinner tonight.

And my people shall dwell in a peaceable habitation, and in sure dwellings, and in quiet resting places; Isaiah 32:18

It's alright for them!

Since Chris's discharge from the Emergency Department for heart failure, I have been suffering the Mother of all flares. My fibromyalgia has hit an all time high.

No doubt this has been from the stress and anxiety I have experienced since his diagnosis and the blase  doctors who laughed and joked when I asked what his prognosis was.

They made light of my anxieties and wouldn't even engage into any conversation about what exactly was happening to Chris's heart and why. 

I was thinking of making a complaint against them but Chris doesn't want me to.

Their blase attitude to Chris and I reminded me of trying to get my diagnosis of fibromyalgia. The doctors I saw all gaslighted my complaints of symptoms and the anxieties I felt.

It is wrong that they do this to their patients and their family. They should have a little respect- after all, it's not knowing what's going to happen that makes patients anxious, but they often are dismissive and arrogant.

And why not? because it's ok for them to be so nonchalant: it's not their life and marriage potentially going down the toilet. So it's alright for them! 

In for a bumpy ride

 

Life has its good and bad days. They say we all need some rain, but lately life has poured out a torrent of rain in the form of new health issues for Chris and I.

A diagnosis of severe cardiac issues for my husband and worsening arthritis that sees my hands now locking in two trigger fingers has given us both some new challenges.

Unable to drive at the moment, I will have to be chauffeur to Chris and take him to his many tests and doctors appointments mapped out for us.

I don't particularly drive well  because of pain issues with my back, knee and now my thumb won't bend and I am afraid that I won't be able to hold the steering wheel properly. And all the more challenging is that my trigger fingers and thumb are on my right hand.

I have been stocking up on grocery shopping and keeping up with prescriptions that we need in order to not have to leave the house much. It will be enough for us both that we need to get to hospitals and the doctor and chemist weekly.

In my old age I find I cannot take stress as well as I used to and this has created the Mother of all Flares in my fibromyalgia. I truly am afraid for my husband.  But I must stay strong for him and he will never know how anxious I am.

My hope is that his appointments and tests are evenly spaced out because after a day of driving, my muscles rebel and my spoons are gone and I am done in. I simply must pace myself, but medical matters can't be organised like a new haircut or a dental visit.

For those of you who are believers, I would be grateful for prayer for strength and driving ability. Especially seeing as it is really going to rain and we are both in for a bumpy ride.

Is a little compassion too much to ask for?

 It is so difficult to adjust to a new normal after a diagnosis. After many years of wondering why I had all over pain and tiredness, I finally got a diagnosis of fibromyalgia.

I was relieved that I had a name to put to the painful syndrome that sucked the life out of me and added to my woes as a sufferer of angina, arthritis and back pain. And polymyalgia rheumatica thrown into the mix.

It made sense that with all these ailments, I would be finding it more difficult, or even impossible to do the chores that after a lifetime of being a wife and mother, were familiar and regular as the rising and setting of the sun.

With the newest diagnosis, came a depression because not only was I totally frustrated with having to constantly adjust to my new normal, but I was not afforded much compassion or understanding from others.

It was intimated, but not said, that I was lazy and using ill health as an excuse to be lazy. Nothing could be further from the truth. I was laid low emotionally as well as physically.

These days, it is rare to find someone who is compassionate for the chronically ill and/or aged. And it compounds the frustration and anger one can feel as one goes through the cycles of grief with a new diagnosis that limits one further.

I know a little understanding from others would go a long way to help me adjust and accept it every time I am faced with a new normal. 

Sadly, not only do most people now not want to listen about chronic illness, but they don't want to know. 

It's not a hard thing to commiserate with the trampled flower bowing under the weight of pain and illness and later, stigma. 

We don't necessarily ask for help from others, but is a little compassion too much to ask for? 

Red meats on Good Friday?

With Good Friday being on us, often the question of whether or not to serve red meat comes up. There is a tradition in the Catholic church that red meat is not eaten on Friday and the protestant churches followed with it not to be eaten on Good Friday.. 

Because I have found nothing in scripture forbidding us to eat red meat on Good Friday- or even on Fridays for Christians, I have no problem whatsoever eating it. In fact, when I was worshiping at a Pentecostal church, they held a BBQ after the Good Friday service. The answer for our house is yes we eat it on Good Friday- however, if someone is with us who has a problem with that, we abstain for their sake. Scriptures don't tell us not to eat red meat on Good Friday, but they do tell us to respect the conscience and belief of those who don't wish to. I  believe like everything in the Christian life, it comes down to loving your neighbour and fellow man. 

This year because my son is living with us and because he upholds the traditions of his childhood when his (non-practicing) Catholic Italian father didn't eat it, we will be having fish. Likewise our family BBQ for Easter is going to be at my daughters' home with fish as the mainstay,  because her husband upholds the traditions of the Catholic church. They do not eat red meats on Good Friday. 

I believe we are to respect other peoples' conscience in our decision whether we serve red meats to them. It is the loving thing to do.. Have a blessed Easter! 

© Glenys Robyn Hicks

If any of them that believe not bid you [to a feast], and ye be disposed to go; whatsoever is set before you, eat, asking no question for conscience sake. But if any man say unto you, This is offered in sacrifice unto idols, eat not for his sake that shewed it, and for conscience sake: for the earth [is] the Lord's, and the fulness thereof: Conscience, I say, not thine own, but of the other: for why is my liberty judged of another [man's] conscience? For if I by grace be a partaker, why am I evil spoken of for that for which I give thanks? Whether therefore ye eat, or drink, or whatsoever ye do, do all to the glory of God.  1 Corinthians 10: 27-31

Our back garden's like an airport

So today as I was resting on the couch with a fibromyalgia flare, I saw that a whole lot of birds had come to dine on the new round of birdseed and strips of steak leftover from dinner last night.

We had galahs, parrots, minor birds, pigeons and even a duck. They were flying in and taking off so much that our back yard looked like an airport.

Chris took a video but because he couldn't get too close to the back door without frightening them, the video isn't as clear as we would have liked. However, you get the idea.

With it being a cold rainy day today, it was the perfect day for a lie on the couch and as always, the picture window/door provided a wonderful view of the birdlife.

It's pretty cosy here though with the fire going and dinner bubbling in the slow cooker. Once again I am grateful for this house which nurtures us so much, especially during times of lockdown or recovery from fibro flares.

The view from our couch always changes like a screensaver, even if it's just a couple of butterflies flying past, a duck waddling in the yard or our back garden looking like an airport.