Not as I appear

We chronically ill women try so hard to do "normal" things. Like look well. Be cheerful. Be patient. Kind. Hospitable.

Our family and marriage are our first priority after God. We try so hard to spin our wheel not fast- but at a "normal" pace. By "normal", we compare ourselves to those who do not suffer from chronic illness and pain. Or are disabled.

We are very careful to keep serving our family but sometimes with the illness that afflicts us: we fail. This often gets to us and causes us to sink into depression.

Being unable to process that we simply can't act as "normals", we often berate ourselves and sink into the Pit of Despair. 

We are often judged by "normal" standards, as we simply cannot attend certain social functions like before. If we do, the pain and effort can make us tense and we can make us appear moody unsociable grumps aka the death head at the feast. 

If only "normals" would realise that we are pushing ourselves every day to live a life that not even closely is "normal" like in the days before our health failed. We get so adept at doing this, that we have become quite good at wearing masks to cover the Mask Of Pain. Hence the appearance of being in a mood. 

My fibromyalgia and other health issues have now made it impossible for me to disguise, and I have learned to acknowledge this to people and tell them in advance that my attendance or action or whatever is totally subject to how I am on any given day.

Basically, I have had to pander to injured knees, angina, spinal problems, fibromyalgia, polymyalgia rheumatica, and submit to tyrannical spoons by being totally flexible about my appointments and so on.

People may still misjudge me but that is not my problem. I just pray that the LORD will allow them to see that I am not lazy or unsociable, but am just a chronically ill woman who finds just breathing some days enough effort.

The LORD knows I am not well, but people take a lot more convincing. I am not as I appear: I am not "normal".

 © Glenys Robyn Hicks    

Put on therefore, as the elect of God, holy and beloved, bowels of mercies, kindness, humbleness of mind, meekness, longsuffering;  Colossians 3:12

It is what it is!

 

So it's Christmas Eve here in Australia. I am struck down with a vicious fibromyalgia flare. 

In recovery from going out for medical tests for both myself and my daughter, I am trying to find some spoons to take a shower before bed.

As I mentioned, Chris and I are cancelling Christmas this year. In light of how I am feeling, it is just as well.

Chris is recovering from a fall last week and is not feeling the ho ho ho either.

Apart from a traditional Christmas lunch courtesy of Lite N Easy, we will be taking it easy tomorrow.

We are going to take Holy Communion online with my sister and son at lunchtime and that will be the extent of our celebrations.

As I said in the last post, it is not an ideal Christmas, but it is what it is.... fibromyalgia wins again! 

It's OK to have a simple Christmas

As you know, I have been having problems with my heart and fibromyalgia. My blood pressure is barely controlled and I am constantly tired.

We have decided to cancel Christmas this year. I haven't even put up a wreath on the front door, let alone, a Christmas tree.

We are staying home and nobody is coming. Contrary to how I would feel in years past, this year's plan gives me peace.

We plan to play games online with my sister and son. There's nothing like a game of online Scrabble with familiar people who are well matched in scores.

None of us is able to attend church these days but that doesn't stop us from worshiping God and remembering Jesus on the day we choose to celebrate as His birthday.

Next week I will be ordering my Christmas food and I will be buying a ham and organic salad vegetables for Chris's and my lunch. I will also be buying some grape juice and matzo crackers, as we plan to take Communion online with my sister and son like we did last Easter.

It is not an ideal Christmas, but with all of us feeling unwell, it is making the best of a bad situation.

We all feel that as long as we remember that God sent His Son Jesus to bear the sins of the world and be our Saviour, then that is what Christmas really is.

Besides, the first Christmas was extremely unpretentious and simple. It's OK if ours is too...

God's got this!

 

So the specialist's receptionist just rang me with my appointment for Monday. It's midday. 

He wants to do a stress test on the bicycle but I can't because of my ligaments being torn in my knees. My last chemically induced exercise test saw them do a code blue for me as it gave me a heart attack. 

So I said no to that and to angiograms.. it's kind of freeing to know that I get to call the shots in my life... it's sad that I got to old age before I said no to doctors... anyway, he waived the $300 fee for video consultation yesterday. Medicare will pay him. So I am very happy and relieved about that...

Thanks to God, I can relax, God's got this! 

This is a great help

 

As you know, I have been having problems with my blood pressure. So I have had to plan my days to include a lot of rest without having my house looking like it's been burgled.

Not for the first time, I have integrated the Lists for a chronically ill home keeper into my day. I will be following these Lists from Sylvia Britton of Christian HomeKeeper for the next week or so.

I find them invaluable. Here's the link if you want to try them too.

Being your own doctor

So over the past few weeks, I have been having problems with my blood pressure. I currently am on  seven different tablets a day to lower it and my doctor has been trying to improve the results by switching around how I take them.

So along with my other blood pressure tablets, he had me taking my Physiotens .4 in the morning with my other Physiotens .2. As well as the other ones.. all at once.

This did not go over too well with my body. An hour after taking them, I became so sleepy that I fell asleep at my computer. I then had to sleep them off for about three hours in bed.

My mouth was so dry I couldn't swallow easily as food would get stuck in my throat.and my eyes were dry, making them red and sore. I was craving water like someone in the desert...

It was aweful at times as I would suddenly come over sick and nearly retch. I got normal BP readings but I was not happy with  how I felt.

So I did a Google search and Viatris who make Physiotens said that the maximum dose a day was .600 and that amount should not be taken at the same time. Further, all my symptoms were side effects of the Physiotens or Monoxidine

I had a phone consult with my doctor and told him the story and said it's true  not to take the .600 in one hit, but on occasion it had been done in cases of stubborn high BP and was effective. But at what cost? I thought.

I told him I wasn't happy with how I felt so he said to experiment myself. I felt like saying.. but I am paying you to direct me but I didn't... he usually is very good.

Anyway, last night  I woke up for the bathroom and I felt weird. I could hear my heart thumping in my ears, I felt dizzy and my legs didn't seem to want to hold me up.

I ran my wrists under the cold water in the ensuite vanity, took a couple of paracetamol tablets and went back to sleep- which hasn't been that good since I changed the tablets around- another side effect apparently!

Waking up at 8am, I felt nauseous and dizzy so I thought my BP would be low- it was high at 214/88 with 69bpm. My bpm is usually 59-60. I immediately took all my tablets, except the .2 which I plan to take tonight.

I checked my BP an hour later and it was 161/82 62bpm. I went to sleep for a few hours and retook it. It was 136/73 57bpm which was much  better.

It's not the first time that I have thought it is sometimes better to be your own doctor these days.

When the fog clears, tea's on the list.

 

Recently I have been having trouble remembering things. At 70, I worry about dementia and think that maybe I am going down that path.

But in talking with people who suffer from fibromyalgia like I do, I realise that fibro brain fog can make one forgetful. Especially during flares.

Having just moved house about 6 weeks ago, I am just starting to recover physically. I have a flare that is pretty constant with no spoons and I do forget things. And words mid sentence.

I don't think me forgetting to order tea in the online grocery order really means I  have dementia. I guess fibromyalgia flares can do that.

Looking through Marketplace the other day, someone was selling a bassinette identical to the one I had for my 4 children. It brought back memories like they were only yesterday.

But that didn't make me feel very at ease about my forgetfulness because dementia robs one of short term memory. But then so does fibromyalgia during a flare.

Considering all my previous times of brain fog during a flare, and my subsequent good memory, I surmised that it was not dementia, but brain fog from said flare. 

I believe when the flare abates, and the fog clears,  I will remember the tea in next week's shopping list. 

"We give You thanks"

                                          

"We Give You Thanks"

Lord, as we gather at this table
May we be truly grateful
For the bounty You have given us.
We thank you for the earth and rain,
The good harvest and the wholesome grain
That went into our daily bread
And kept the stock that kept us fed.
Thank you for the hands that cooked and baked,
And for the water that our thirst slaked.
Please accept our thanks as we honour You
For Your goodness in giving us this food.

© Glenys Robyn Hicks

By him therefore let us offer the sacrifice of praise to God continually, that is, the fruit of [our] lips giving thanks to his name. Hebrews 13:15

We're going for a run

As you know, I have had to resort to using a wheelchair when I go out.  It is not something I am happy about, but it is a necessary part of adapting to my new normal.

Along with walking, there are a few other things I have had to adapt to as well. 

I sit on my shower seat. When I get out, I sit down again and dry off. That's about all the time I can stand.

Most times, Chris stacks and unstacks the dishwasher and this has stopped me having to stand and bend.

I always use the dryer even in good weather. I miss the smell of sun-dried clothes, but it is what it is.

I do make my bed for company, but even so it is just pulled up quickly, nothing fancy. I can't stand to tuck it in and I can't bend either...

With the ageing Australian Government Package, I have a support worker come every two weeks. She changes our beds.

Also within this Home Care Package, I can order ready cooked frozen dinners from Lite N Easy. The meals are designed by a dietitian and cooked by a chef. They are quite delicious and save me from having to stand to cook and I know we are eating well.

I am grateful for all this as it allows me to still be mistress of my home in spite of illness, pain and disability. But even so, I find myself longing for the soon rapture of the Church.

It will be so glorious to not only see my Saviour, but to be able to breathe easily, feel joy and go for a run...

Not falling off the vine

 

Since turning 70 last May, I have noticed a rapid decline in our health. Heart issues are worsening, pains are hurting, fibromyalgia is making spoons are scarce and my mood is darkening.

We both are enjoying the peace in our home that has been jealously guarded and nurtured. Quite simply, we cannot cope with other's dramas.So much so that we have become reclusive.

The days when we don't have to leave our home are cherished days. And even though we make a point to get dressed each morning, we are not adverse to having a couple of Pajama Days occasionally.

In short, we are wearing out. Physically, mentally and emotionally, we are spent. I can say that we aren't spiritually spent because we pray and worship a lot. It does help.

I have been posting a little spasmodically because of excessive fatigue, and I have decided that from tomorrow onward, I will post in a diary form recording bloods, blood pressure and so on. Plus anything else the LORD puts on my heart.

Today is Sunday and I have just done the least I can do to keep our home manageable. With the fatigue being bad and no spoons, I took a nana nap and it turned into a grandma nap. Three hours.

But I woke up and felt a bit better and managed to fold some clothes that had spent their new clean life in the laundry basket...

Anyway, I had a comforting thought which I will share: there's an old saying that the aged say... "I am so ripe that I am falling off the vine!" Not very comforting. 

But the next thought was comforting- physically, yes I am- but spiritually, not so. Instead I am grafted into the Vine- Jesus and He sustains me and gets me through this painful path called life...

So, with His help, I am definitely not falling off the vine!