Friday, 14 May 2021

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.

Tuesday, 11 May 2021

I can't keep doing this to myself!

When I have a bad flare of fibromyalgia and/or polymyalgia rheumatica, I feel so sore and tired that I often let the dishes build up.

We all know that when you put one cup or bowl in the sink, they suddenly start multiplying and pretty soon you have a stack to tackle in washing up.

With Chris quite ill at the moment, I am loathe to ask him to help me so this problem is absolutely on my shoulders alone.

Last week the lady who comes to clean our house once a fortnight, washed and put away my dishes and it was so nice to see an empty sink and find a clean cup without a search party and ensuing  mammoth cleaning marathon.

I was so impressed that I have kept it up, washing up as we use the crockery. In fact, the first day after she helped me, we got up and thought we were in the wrong house! There was a clean sink and kitchen.

It's taken me 52 years of being a home maker to finally realise that by procrastination- I mean of the long duration type, not once in a blue moon- is a killer not only of productivity but peace.

It's been a week now since I have turned over a new leaf and I have found that it is less draining on my energy levels and is achievable.

I know it's only been a week, but for a chronically ill old chook with longstanding procrastination habits, it's a long time.

It probably sounds pathetic to all the "normals" who say, "Well it's only washing the dishes!", but to a spoon challenged tired sick sufferer of continual pain, it's a big deal!

Another plus is that with the kitchen clean, my spirits have been uplifted and I am far more likely to grab the pile of clean washing and fold it. It sort of has a domino effect! 

Whatever, I feel better for the discipline and look forward to waking up to a clean kitchen now. Besides, with the realisation that housework is spiritual, I find I function best in a tidy house and will make every effort to keep it up and not have a mammoth dishwashing session. I can't keep doing this to myself! 


Friday, 7 May 2021

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.

Thursday, 6 May 2021

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!

Monday, 3 May 2021

Cooking with fibro plus fibro bloggers' tips!

In trying to come to terms with my sore hands and lack of energy with my fibromyalgia, I have come up with some new tricks to help in cooking meals.

I have gleaned all the catalogued convenience foods available online and I have found some things that I don't have to peel or chop.

Getting my meat already diced and my vegetables pre-cut and peeled is more expensive, but if it means that we can still enjoy nutritious meals, then so be it.

My freezer has diced onions, pumpkin pieces, diced carrots, broccoli and florets of cauliflower as well as pre-cut chicken, stewing steak that has been diced and diced bell peppers. I no longer peel and chop and mash potatoes, but I use the frozen potato with butter added. It is worth the expense.

I have a jar of minced garlic so that I don't have to peel the cloves. Our pantry has spaghetti, penne and rice that cooks in the microwave in 90 seconds. I use that because I no longer can hold the colander to drain it. Our fruit is canned as I can't peel apples or oranges.

I keep our butter in a dish in the pantry because I cannot hold the knife to cut through hard butter or to scrape it. My diet lemonades now come in bottles because I cannot manage the pull rings and my tomato sauce is in an easy pour container for the same reason.

I am grateful for anything which will save my hands, like my electric can opener and my dryer as I no longer can hang washing out to dry. You don't realise how hard pegging something on is until your hands are too weak to push on the pegs.

But one simply has to go on and like all good Sacrificial Home Keepers, I do. It just takes a bit more planning and a lot of research to keep at it when you are an old hand in need of new ones.

Saturday, 1 May 2021

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!

Monday, 26 April 2021

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

Thursday, 22 April 2021

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

Sunday, 18 April 2021

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! 

Thursday, 8 April 2021

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.