It's a bit unnerving

So half an hour ago Chris and I were discussing getting a new phone.

Chris asked how many points do I have from loyalty to Telstra and I said I would check on it.

Ten minutes later, this message came answering my points question.

I hadnt even checked it out at the time.

Tell me that AI Siri isnt listening in on our conversations. Its a bit unnerving...

 

The trust is gone!

Just something funny but serious happened here this week. We both have had stomach cramps and the runs and we were questioning what foods could have been responsible. Nothing out of the ordinary was eaten... well, I started using new dishwasher stuff and Chris has been helping me load it. 

Today we were doing it together and I said that it needed more drying aid in the dispenser. So Chris hands me the drying aid...only it wasn't it. It was the dishwasher cleaner... I said is this what you have been using? he said it was... I told him it was the wrong product... his response was but it is blue!.... 

No wonder we were having bad cramps... He needs to get his eyes checked. Seriously! the trust is gone... I will be loading the dishwasher myself from now on.... perhaps that was his plan?! lol

You must make a choice

In life, we don't have a say how we were born, or who our parents are, but in death, we do have a say. Either we will be in Heaven or hell. Either our Father will be God or the devil.

Based on how we want to live forever, and the decision we make to that end, we have a say- a very important choice of whom we will serve. We have to make that choice- either we serve God and live with Him or we choose Satan and suffer with Him forever.

Make the choice to love God and live for Him. And remember, your indecision and silence means you remain in your sin, a child of the devil. You cant be half-Christian... you are saved or not.

Make the choice to be a Christian today. The end of your life here demands a choice. Get saved today. You must make a choice.

Making hygiene fibro friendly

                                         

I have been ill with fibromyalgia for about twenty years now. In that time, lots of things have changed, and one of them is my personal hygiene routine.

One would think that taking a bath or a shower would be an easy thing to accomplish, but if you suffer from chronic fatigue, fibromyalgia, back problems or angina problems like I do, you would realise that it consumes a lot of your spoons. So I had to do a bit of rethinking of my daily routines. I've discovered that one of the places that takes a lot of my spoons is the bathroom.

Because bathing and drying and dressing exhaust me, I varied my time in taking a bath depending on how well I feel. If I have enough energy, I would bathe in the morning, if not I would take a shower before bed as Chris is home and he helps me get dried and into my nightie. (When you are chronically ill, you quickly get over being humbled by needing assistance- you are grateful for any help available.)

I have found that if I take a bath or shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better.

Hot baths or showers leave me too exhausted and give me angina pain, so I take showers with only warm or tepid water. While I would prefer to shower every day, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. I have decided on some new course of action to make time in my bathroom more fibro-friendly.

One of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. Here I find those telephone type showers are useful. When I get out of the shower, I sit down to dry off.

I can no longer blow dry my hair so by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Because of spinal problems and being a short person, I have a glass in my bathroom which I fill with water and use for rinsing and cleaning my toothbrush without straining to reach the tap.

I no longer wear makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occasions only; it is too painful a task to do on a daily basis. Also, my face is so sensitive that it breaks out in red welts at the slightest pressure... which includes smearing on foundation. This is called dermagraphia.

The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I am going to follow these 3 rules: I will only take a shower at night, I will only take warm water showers and I will only take a shower every other day. With the employment of a good deodorant after each shower and a fresh change of underwear each night and morning, I have found that I don't offend anyone and remain feminine and dainty.

Life with chronic illness is complicated, but at least I manage to stay clean while living it!

© Glenys Robyn Hicks

So teach [us] to number our days, that we may apply [our] hearts unto wisdom. Psalm 90:12

Help until He comes

Today was a busy day in that I was organising aged care help for Chris and I ... we arent coping all that well... lots of phone calls that had me on hold for at least an hour each 

After nearly a whole day on the phone, I am happy to report that we were approved for help. Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

I am hoping that God takes us Home soon. That is the best thing to dwell on. But meanwhile, while we wait, my house could do with a deep clean, our toenails are feral and we need them properly done. We cant take a bath and we help each other shower but a grip bar and telephone type shower have been promised to us under home maintenance, and that would stop the suffocation feeling of water pouring over our head when we can't breathe at the best of times.. 

We cant drive most times and we will need transport for a personal consultation with our doctor and the help they offer is needed now.  Nothing to do with lack of faith or not watching- but we have to be practical. 

Heart failure is a beast that stalks us both and is a progressive disease. Peripheral neuropathy in our feet and legs is a constant pain that stops sleep.  A physiotherapist may be able to help or offer exercises to alleviate it.. all things that need attention now. 

Including last but not least, changed bed linen that can be done without banging gnarled fingers and hands... and while we look with anticipation and longing to be Home, the daily necessities of life are calling. 

We rely on God to help us and are grateful that He has blessed us with the help we need...until He comes. Our life style is always if the LORD wills.... we consider ourselves blessed that we are eligible for the help that's come our way, until He comes! God willing, it will be soon. But if not, we will be accepting help to keep going until He comes.

 © Glenys Robyn Hicks

" So teach [us] to number our days, that we may apply [our] hearts unto wisdom" Psalm 90:12

Time on the phone paid off

After nearly a whole day on the phone, I am happy to report that we were approved for help. 

Our aged care home package will start in 3-4 weeks. It includes transport, home maintenance, podiatry, and grass cutting. 

Later on as we get older it will include meals on wheels... but as long as I can cook, we would prefer our own cuisine. 

Once a year someone will come and wash our windows for us. The is all part of the Australian Government's plan to keep seniors in their own home instead of a nursing home.

I had to access three different goverment bodies today via phone with a waiting time of an hour or more, but with the ability to be approved so quickly and for the blessing it will be, the time on  the phone paid off.

 

I can't believe it!

 

The last five days have been a dream come true! I have been sleeping better and I have woken up with spoons!

I have been very careful to keep pacing myself as I don't want to get a rebound flare due to burnout. So far, so good!

It's been about 22 years since I have felt this well. I am very grateful for the respite from pain.

So unusual is this new found energy that sees me operating as a "normal" person, that it feels "abnormal"

But today, I will enjoy this new energy and thank God for it. If it wasn't me I would want to know my secret- no secret.. but in any case, I can't believe it! 

Spoons are a distant memory.

 

Lately I have had a flare of my fibro flare. It's resulted in the most epic fatigue that it seems just breathing is an effort.

It's actually been going on for months. I keep referring to it as a flare, but today I realised it's a flare that never gives up. It's eternal- with no discernable beginnning and no end in sight.

I can sleep for 12 hours and still have no energy. 

We eat good nutrional food. I cook everything from scratch, but the ennui and corporeal exhaustion still remain.

I often think if I just have this or another cup of that, it will help me regain some spoons, but unfortunately nothing seems to help. I never got my first wind, let alone catch my second! 

My doctor is going to run some tests especially focussing on my thyroid and iron levels. I personally don't think it's that. My iron levels have been consistently high and my thyroid level is normal and has responded to my Thyroxine which I take for hypothyroidism. But I will do the tests anyway.

No, I think fibromyalgia is the culprit for my physical exhaustion. It seems now to be a way of life. 

Spoons are a distant memory.

That to me is true love

 

So I have had such a flare up of my fibromyalgia that I went back to bed leaving a kitchen full of dirty dishes. Dishes that sat on my draining boards and in my sink.

I just needed to recoup some spoons and I was hoping to awake with at least enough to clean my kitchen.

You can imagine my joy and surprise when I woke up a few hours later to find that Chris had run the dishwasher and wiped down my kitchen benches! 

Now those of you who suffer from chronic illness, especially fibromyalgia know that we can become victims of the rollercoaster of emotions. Grateful tears ran down my cheeks and I rushed to Chris and hugged him tightly. 

He was surprised at my emotional response to his help, but it wasn't just a helping hand in home duties. It was a feeling of nurture and love. Especially when he is battling with severe health issues himself.

It was an act that solidified our union as a team, our home as important, and his wife as cherished. And this cherished wife was very aware and very encouraged. Why? you ask. 

Because I know exactly how many scarce spoons it took him to do this. And that to me, is true love.

Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.