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.

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! 

 

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!

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? 

When I do, I don't!

 

When I was a young woman, I ironed clothes as soon as they were bought in from the line. It was something as regular as clock work.

Gradually as the babies came and later on, spinal problems, it dwindled until I only ironed what was strictly necessary, that is- what was seen.

Twenty three years ago, my iron was kept in the linen press and only saw the light of day for service on a high holiday such as a wedding or funeral! 

As fibromyalgia overtook my life and abilities, my iron was boxed for posterity and now serves as a door stop to keep my back laundry door open when the dryer is in use!

Life for a sacrificial home keeper is difficult enough with what absolutely must be done to keep a home. There are things that must be done daily and goodness knows, there are little enough spoons or energy to do that, let alone lift a heavy appliance and stand or sit to iron clothes.

With sleep a precious but scarce commodity, coupled with tearing sore muscles, we must keep our home making simple. Ironing is simply too taxing on the chronically ill woman to seriously consider as part of a daily routine.

At first, I was particular about how I hung my washing out, in order to leave no creases and so minimise the visual effect of unironed clothes. But over recent years, polymyalgia rheumatica and arthritis vyed with fibromyalgia for first place in pain stakes.

I could no longer lift my arms to peg the washing out, and I was forced to make use of my dryer every time.

By doing just a load of washing a day, it doesn't build up and I find with less clothes in the dryer, that they come out almost wrinkle free. I try to grab them as soon as the drying cycle is over. All they require is a quick shake as I fold them and put them away.

Don't get me wrong! The OCD and perfectionist in me baulks at having to do this, but the practical and pragmatic inner woman says it is OK. It is simply my new normal.

There's plenty of tasks each day vying for first place in sucking on my limited spoons, so when I have a few spoons and I am tempted to drag my iron out of its' box: I don't!

Today's lists are:

• Clean kitchen
• Do a load of washing
• Cook chicken garlic breasts and mashed potato for dinner

Help is on the way!

So last week I got a phone call from the Aged care people to inform me that they can send a woman to clean for me. She will be wearing a mask and social distancing they tell me...

She is coming today early in the morning, so I have gotten up, dressed and breakfasted and stripped off our bed for changing. My fibromyalgia is flaring, but I have had to ignore my sore muscles and look to the next few hours when the cleaning lady is here.

You can't imagine the relief I feel as we can't manage heavy cleaning anymore. Vaccuuming, mopping and bath/shower cleaning knock us both out. As I have said to the Aged care people, I can do things at waist level like cooking and washing dishes. 

I no longer use the clothesline to dry my washing which is a shame because there's nothing quite like fresh laundry that's been dried by the sun. However, since my polymyalgia rheumatica bouts, I have trouble raising my arms: it even hurts to brush my hair. Which is why I now wear it short. It's manageable.

Today is the day I refill our medicine containers and that means that later on I will have to get to the chemist to get prescriptions refilled. I also need to buy electrodes for the glucose monitoring machines.

Our sugars are still too high, even though Chris is now on 20 units of insulin twice a day plus his oral medications. I have been put on Januvia 50mg a morning with 2 diamicron tablets. We are not winning this battle against diabetes 2.

So I am looking up dishes to make that are low GI and trying to learn about reducing blood sugar. And although it seems like I am taking steps backward, at least I am winning in the cleaning stakes because mercifully, thanks to Centrelink, help is on the way!

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...