Something I hope and pray for.

 

Another issue to afflict me. An exacerbation of my lymphedema  I have been in hospital to treat my cellulitis in the legs. I was on IV antibiotics but after 24 hours they sent me home.

I am now on oral antibiotics which are very rugged on my stomach. But I need to persevere.

As Chris is unwell, I told him to stay at home. There wasn't really a lot he could do for me and thanks to mobile phones, I was able to keep in touch with him.

My doctor has told me to try to keep my legs elevated to try to encourage the swelling to recede, but she has also said that lymphedema usually is a life long problem.

My aged care personal assistant/cleaner can't come to the house if I am not there so I came home to a mess. Chris is not well enough to do much and can hardly stand up since his stroke.

At least I know that I do not have any blood clots in my legs. They did an ultrasound because my legs were hot and swollen and very sensitive to touch. They did hurt with the swelling, lymphedema and of course severe fibromyalgia.

I am planning on having an early night as they have told me to rest. Which is all very well until you see my messy house.

Tomorrow I am planning to shower and get some water on my affected limbs seeing as the doctor said I could do that. To make that happen, I will be praying for strength in the morning. A shower is very taxing these days.

I will bid you goodnight then take my final antibiotics for the night and head to bed. 

Tomorrow is another day and with God's help my legs will be a bit better. I just want some improvement- and it is something I hope and pray for.

It's my new normal...

                                                                               

Lately I have been extremely tired and in pain. My fibromyalgia has flared, my knees are sore and my lymphedema has caused my legs to swell so much that the skin has burst in places and is leaking clear fluid.

I am on strong antibiotics to prevent cellulitis and the doctor has told me to rest my legs by keeping them elevated.

So I have had to think about what needs to be done daily just to keep the domestic wheels turning. Chris is battling his own health issues and cannot help much.

At the very least I need to feed us daily and keep up with the washing of clothes and dishes. And feed the cats.

So in the morning I rise, feed the cats and birds, feed us and test our sugars and inject our insulin and take our tablets. I check emails, budget and repeat prescriptions...

I pull the blinds up and let the sunshine in and if the weather is OK, I open the windows a bit.

I do a quick ablution and get dressed. Then I put on a load of washing. I rest my legs by having a foot rub on the couch to encourage the fluid to go up towards my heart.

About 11am I put the kettle on and change the clothes from the washer to the dryer. I later sort out his and her clothes and we live out of the laundry tub.

We have a cup of tea. I decide what to have for dinner and take some meat out to defrost. Then back to the couch which usually ends up with me taking a nana nap. I just can't seem to stay awake lately...

So with extremely limited energy, I start dinner around 5pm. And I have found cooking in cookie sheets so handy when you literally can't stand for long. I found a website here that is so helpful. 

While dinner's cooking, I feed the 3 cats again then I take our blood sugars and inject us. We then eat and usually I clear the table and Chris loads the dishwasher if he has energy.

I go around pulling blinds down and turning lamps on to give a restful ambiance. Then I turn our electric blankets on low. Then I dispense the night medications and put my swollen legs up.

I know it doesn't seem like much to women who enjoy good health but it is a lot for me to do each day.

I go to bed about 10pm and listen to the Bible on YouTube. I like Sir David Suchet's readings. Most times I fall asleep pretty quickly.

I usually wake about 7am and start the day much the same as described. It's my new normal...

Catching up and Staying put.

 

You may recall our rented home was up for sale. Well, it finally got settled last Thursday and we are allowed to stay on as tenants.

This was so good as we have now acquired another cat to join Xena and Milo. He started out as a skinny manky stray but his quiet ways and lovely face won our heart. And being a cat lover, I fed and befriended him.

Eventually he invited himself inside and captured Chris's heart as well. We didn't know what gender he was, so we named him Ginger. We thought he was a feral cat but I looked into our local FB groups and lo and behold, in the lost pets section, who should be staring at me on the page than our little Ginger.

So I messaged the owner and she confirmed it was him. He has blossomed and she loved the video we posted of him. She said he looked happy and told us he was an almost 3 years old neutered male, was called Joey and had run away when moving house last January. 

She also told us that as circumstances had changed she could no longer keep him, so we could keep him! We did! He has the sweetest nature ever! 

I have finally weaned off the Prednisolone. I have gained weight while I have been on it, but the pain relief it gave almost made it worth it. I still have polymyalgia rheumatica and also fibromyalgia, which isn't helped by Prednisolone. It seems that pain will always find me.

My lymphodema is still bad with my right arm swelling a lot. My sugars are coming down too since I started on insulin injections.

On the bright side, we have a great-grandson due any minute, a great-granddaughter due in July and another great-granddaughter due in October. I have already given each mother a crocheted shawl and a knitted jacket and am glad that I managed to finish them all before the latest health challenge.

We had a small baby shower for the girls and I am so glad it was done before these last few challenging months. I made a gender neutral hamper for the baby due in October as it was too early to know the gender. It was a happy day.. 

Apart from crocheting these bibs for each baby, the girls's gifts are done... and so we are caught up and staying put! 

 

Back to basics

As you probably know, life has been really hard for me both physically and emotionally. Chronic illness is never fun.

But life must go on and that life for me is as a wife, and home maker. So it is normal that I would sit and ponder on how I can best use my few spoons or energy and continue to care for us both as well as our pets and home.

I have had to prioritise our basic needs in order to keep our home clean and our bodies clean and fed.

For me I need to daily organise our meals and medications and feed our cats and birds. 

In order to do that, I need to menu plan and then shop online for supplies.

I also need to do a load of washing each day. With polymyalgia rheumatica and fibromyalgia still hurting, I use the dryer.

To keep a roof over our head and utilities and food coming, I have to organise our budget and pay the bills.

I need to organise our medications into pill organisers and get any repeat prescriptions dispensed.

If this necessitates a doctors appointment, I have to make a booking for a phone consult. Every second day we shower and help each other..

With my Aged Care Home Package, I have a cleaner come for 2 hours a week and she does what I simply cannot manage anymore. She changes our beds, cleans the kitchen benches and stovetop, dusts and cleans our showers, toilets and floors.

The day before she cleans, I change the tablecloth, clean out the kitty tray and wheel the bins out for collection. The cleaner brings them in for us.

Every morning I run the Roomba to pick up crumbs and cat's fur. Then with my spoons almost gone, I lay on the couch and Chris rubs my feet to get the lymph fluid off my ankles. And I sleep.

I refuse to feel guilty for needing to sleep or for keeping my swollen legs and feet elevated. I am doing the best that I can.  I am not lazy, just a worn out old Sacrificial Home Keeper trying to get back to basics.

I am comforted!

 

I am on fire with pain. Literally from the top of my head to the tips of my toes. I don't believe I am being punished for my sin. Jesus took that for me...

But I do believe that we live in a fallen world and I am genetically weak with many inherited maladies from both sides of my parentage.

At nearly 73, I am unravelling. It is just the facts.. my body is failing me. I am in agony and I cannot get medications that will successfully keep the pain at bearable limits. This is because some who abuse opioids have closed the door on help for everyone who truly needs it.

They don't believe that I need pain relief, but here is a brief description of my pain in mostly every area of my body.

My head: PMR temple pain and headache. TMJ causing jaw pain and earache. Fibro brain fog.

My neck: Polymyalgia rheumatica pain (PMR) Hashimoto's disease.

My skin: psoriasis and rash on shins from lymphedema of left leg 

My shoulders: fibromyalgia and PMR muscle pain. Lymphedema in my right arm (from the angiogram)

My heart: angina, costrocondritis. Hole in the heart. Ongoing IHD

My blood: antiphospholilipid syndrome. (Sticky blood)

My lungs: pulmonary hypertension. Only my left one working.

My stomach: gastroparisis, GERD. Navel hernia repair done with mesh which is tearing away from flesh

My pancreas: failing due to diabetes 2

My kidneys: failing and dropping at Stage 3- recently 56 today 45. Makers of 50+ kidney stones

My arms: muscle pain with tearing ligament pain. 

My hands: deformed from osteoarthritis. Trigger finger on left pointer finger.

My back & hips: PMR, fibromyalgia, spinal canal stenosis, ankylosing spondylitis, Scheurrmanns disease. No lower discs left. Coccydynia 

My knees: lymphedema, ligaments torn and a fabella in the right knee. Arthritis.

My legs: fluid from heart disease and lymphedema.

My feet: arthritis, peripheral neuropathy from diabetes, heel spurs

Each day brings more pain. The level fluctuates, but it never goes. And I am still treated like a drug abuser when I ask for pain relief- and this is all verifiable by medical tests.

In fact, the only "help" I have gotten is through a pain management clinic where I was told to play Candy Crush to keep my mind off it. It is a joke. 

In spite of all this, I have had comfort from the LORD. He has helped me to seek truth and set the evil one to flight in moments of doubt. It is easy to wonder if one is being punished during a trial of pain and illness.

Sometimes I haven't even been able to formulate prayers and yet He has calmed my heart and made His Presence felt in giving me a peace.

He has led me to rest in Him, allowing me to drift into a sleep that has seen me restored and refreshed enough to cope during even the most painful of episodes.

His Holy Spirit has reminded me that this too will pass and that Jesus is preparing for me a place of eternal joy and health. And that the suffering I have now will fade in the beauty of His Presence and Holiness where nothing will cause tears and pain and where there is no death.

I have truly felt His Love for me wrap itself around me like a cloak of protection and ownership. 

Sometimes He will bring a song of praise or worship to mind, and I will praise Him in spite of it all. For He is worthy.

Through illness and pain, I have felt a Father's concern and love and I have held on to His Promise that He will not leave me comfortless and will come to me..

The pain is relentless, but so is God's Love and Presence. 

It is true: I am not alone. I am comforted.

© Glenys Robyn Hicks

 I will not leave you comfortless: I will come to you. John 14:18

Especially during this rough ride..

 

It has been a rough ride over the last few weeks. Medical matters. Living matters. Family matters.

All the stuff that makes up our life at the moment has graced us with both good and bad events.

Firstly, our new doctor has taken my lymphedema seriously and ordered antibiotics for the bad infection that has overtaken my legs. Ignored by doctors until last week. I have had this infection for 5 years! We are so glad we have at last found a decent doctor..

So three days running, we have had to leave home and see doctors and have blood tests. Not a big deal, most people would think. But with struggles to get enough spoons to shower and get dressed, then to actually get there, it is indeed a big deal...

My kidneys are failing with diabetes.. 56. My infection in the legs is sky high. I have been given Clindamycin. I was also given statins which I tried and the muscle pain escalated 100%. I am not taking them. My fibromyalgia muscle pain is more than enough pain! 

The day after the doctor visits, Chris saw the opthalmologist for a review on his sixth cranial nerve palsy. He is no longer seeing double and has been cleared to drive again. We are praising the LORD that Chris's stroke was not too disabling. We both know it could have been much worse! 

And so, this weekend I have been bed ridden. Breathing is enough with the fibro flare and I have had trouble keeping awake. So I slept. and tried not to dwell on possibly having to move out from here..

I am actually posting this at 2am. My circadian rhythm is all out of whack. But I will be needing to try to sleep again in a minute or I will be no good for tomorrow...

Anyway, I just wanted to let you all know that God has answered our prayers with Chris's eyes. Just another chapter of our life when we can see that His Hand has always been on us. Especially during this rough ride..

I feel sick at the thought

 

So a couple of days ago, we had a visit from a real estate man with the news that the owner of our rented home is selling.

We have been here for 16 months. Our bodies are still feeling the effects of the move. So receiving the news made me feel physically sick.

Chris has recently had a stroke and is recovering slowly from it and I have grossly swollen legs and right arm from lymphedema.  We need this move like a hole in the head.

It was strange that I had just said to Chris that morning that I feel like this is the nicest home I have lived in and that I have emotionally unpacked my suitcase... then this.

I have been praying that the home is sold to an investor so that we can stay here. But I can't see them refusing a sale if it's not.

Then of course, maybe the LORD has something planned in moving that we don't know about yet. So I have prayed in the sense of  "not my will, but Yours be done!" 

I am currently having the heat of lymphodema, polymyalgia rheumatica, angina and back pain, all marinaded in a fibromyalgia flare that has me wanting to stay in bed a lot.

Also, the worst of this is that we are in limbo... we might stay. or we might go. 

I can hardly type the word go... because truthfully, I feel sick at the thought.

Acceptance brings peace and patience

 

Over the past 30 years that I have been chronically ill, I find my tolerance for drama and fighting is almost zero.

It's not that I don't like people, it's just that the more you are surrounded by them, the more involved you become in their problems and their dramas unfolding. These days, I prefer solitude and sharing my life with Chris and our cats.. as for people's dramas etc, I pray for them.

These days, I am so grateful for our home which is a haven to Chris and I.  On the days that I don't have to leave my home, you will find me enjoying the peace of homelife. Our cats, Milo and Xena give us  not only joy, but peace. I love their purring near me. It's particularly soothing.

Throughout the day you will find worship music playing low accompanied by the noise of the kettle as it boils the water for a cup of tea. It's going almost constantly.

Because of lympedema and peripheral neuropathy in my feet, coupled with severe fibromyalgia, Chris will often massage the fluid from my legs and rub my feet which feel like they are burning. He has done this for years and it is so soothing that I will usually be asleep within minutes.

Chronic fatigue coupled with aging has given me extreme sleepiness and I seem to be unable to function properly without a daily nana nap.  I no longer whip myself with false guilt, but have accepted that this is out of my control. It is what it is.

Part of living a peaceful life when chronically ill is to accept that some things will have to go to the wayside, but I try and do as much as spoons allow.

Along with quiet enjoyment of your home, and acceptance comes peace and patience with oneself.. 

Perhaps I am

 

So over the Christmas/New Year break, I have had a few disappointments. Once again fibromyalgia flares, lymphoedema and angina have plagued me when I particularly wanted to be well, and they've ruined my joy in life.

This year we weren't even invited anywhere for Christmas Day or New Year. When I asked about it, my children responded with "well you never come anyway!" It hurt because it's true, but I smiled and said "that's OK!" But it would have been nice to have been invited anyway.

Chris's children came to visit us a few days before Christmas and I was nearly demented with pain and fatigue, but I kept smiling and tried to be cheerful. I don't think they realised how much pain killers and determination went behind that smile.

I know some people think I am a malingerer because I don't look sick most of the time. And I think they believe that I am putting it on when I say how painful my life is- they have no idea the effort it takes to appear well. 

Not allowing illness to define me, I try very hard to overcome my pain, tiredness, depression and lethargy. Often it is overwhelming and I succumb to the feelings of loneliness and inferiority that drown me. 

But no one really knows that depth of suffering, and I do believe no one cares. So I will discipline myself and take control of what few spoons I have, for not many know how heavy the cloak of illness gets.

So when I occasionally do succumb to it, and mention it to others, I can see them looking doubtfully at me and judging me as a malingerer. They think I am acting and putting it on.

I do act a lot, really. Strong when I am weak. Energetic and able when I am clearly not. Smiling in spite of it all. Bearing my load stoically.

If they did know the depth of my pain they would know that I do act- I act out feeling normal. An actor who could win an Oscar to avoid being labelled as a fake. 

A good actor can bring to life a fictitious person and for me, that person is myself enjoying good health.

They say I am an actor- perhaps I am...

A longing for a cup of tea

 

As you know, I have been put on insulin and my sugars are still unstable. My doctor and I are trying to get my sugars stabilised and it's been a bit of a nightmare, to be honest.

On top of this, my fibromyalgia has flared majorly due to us entering our spring, bringing changing weather and muscle pain that is unbearable.

My knees are totally killing me as well and there's not really much I can do. The lymphoedema is progressing nicely, making my legs and arm swell. Again there's not much anyone can do.

The sugars are peaking and at times like these, I feel like I am having a panic attack. It's not, it just feels like one.

My fingers are sore from constant blood glucose testing and I have bruised my stomach where I have injected. This probably so because I am on blood thinners.

I have a raging thirst with the sugars being high and I usually drink loads of tea over the day. I have bought zero sugar soft drinks and cordials, but the horrible after taste mingles with the fruity breath from the burning sugars, so I have been cutting down on them too.

At the moment I am trying to train my taste buds to go without sugar and though getting a big urn for instant boiling water was something I wanted to do, I have put that too on the back burner.

It will stay there until or if, I find a sweetener that doesn't leave a bitter after taste. I hope it's soon because I have a deep longing for a sweetened cup of tea...

Dusting off my wheelchair.

 

Last week my knees both popped out as I was gingerly walking up the passage to answer the door.

I can't tell you how painful it was, but what I can say is that it reduced me to tears and I am not a woman given to crying.

As you probably know, I have ligament damage to both knees which due to co-morbidities, they cannot be repaired.

Chris immediately brought me my walker and after getting my breath back, I limped to the kitchen table and sat down.

It's now the final straw in the pain stakes. With heart and lung issues, plus severe fibromyalgia and polymyalgia rheumatica, and now my latest challenge, lymphoedema, it all became too much.

I have my wheelchair in the garage. I havent used it much but it will have to be used now. My mobility aid scooter is OK but I cant take it into the shops.

Chris read my thoughts and is out in the garage, dusting off my wheelchair...

Stopping perfectionism in its tracks.

 

In my early days, I used to be a perfectionist in my homemaking. I dusted and vacuumed the house every day. Clothes were washed, dried, folded and ironed the same day.

With the advent of spinal problems, kidney stone surgeries, and later heart surgeries, the perfectionism wained.

After my children were grown there wasn't so much work to do. With the advent of fibromyalgia and now lymphoedema, I am lucky to be able to stand long enough to cook a meal- let alone iron stuff that nobody sees much now that I am a full- time couch potato! 

In spite of everything and with help from my Home Support Package, my home is still clean and by constant chipping away at tasks, it looks reasonably clean and organised.

I still have pride in a job well done, but the push to produce and the motivation is almost gone.

Illness has a way of stopping perfectionism in its tracks. 

Bells and whistles

 

I was deep in thought on my computer this morning when something started beeping in the house.

Chris called out to me asking what went off. I did a mental check going through the chores I was currently doing. Or I should say, that my appliances were doing for me.

My washing machine was still washing. I wasn't using my oven. My robotic vacuums were fully charged waiting to be instructed on when to start cleaning. My dryer was not in use. The air fryer was not in use....

I asked Chris if he had left the fridge door open... he hadn't. There was only one thing it could be: the dishwasher. It was! 

It was such a relief to locate the beeping sound. Doubly a relief that the dishes were washed. Now we could find a clean cup to have a cup of tea.

I have had many painful conditions attack my body at once- fibromyalgia, PMR, TMJ and knees that keep wobbling out of place and my lymphedema is so active that I can't wear my usual slippers. My feet and legs are too swollen.

Along with these painful conditions has come the need to sleep around the clock. So I have been remiss in keeping the dishes washed and ready and although I have been washing our clothes, we have been living out of the laundry basket. 

I know that's not ideal, but chronic illness and consequent no spoons has dictated my pace. When one has constant chronic pain, one's attention span is short and the beeping helps bring my attention back to the task at hand. As always, I needed a clean cup to make my tea this morning.

But I digress- back to beeping- I am glad my applicances bring me back into focus and come with bells and whistles..

I think it was well worth it

 

As you know, I love watching the birds that come in to our back yard. Naturally, they fly off as soon as they notice us sitting watching them.

We don't have a vertical blind which would make it private enough to watch them without them seeing us. So I had to come up with something that wouldn't damage the house but does the trick.

Anyway, first we tried cling window dressing that was mirrored from the outside, but clear inside. It should have worked but was not very good quality and my granddaughter gave up.

When I was looking for something clingy for the window, I came across these decals. So I got some.

Putting them on was difficult for me... Chris has vertigo and couldn't help me and I didn't want to ask my granddaughter to come all the way up here to put it up again.

Anyway, it works a treat. The birds come and go and give us much enjoyment.

It was very difficult for me to apply, especially the bottom decals... my spoons evaporated quickly and my muscles complained loudly.

The next morning, I woke up with the mother of all fibromyalgia flares. My back hurt, my bottom muscles screamed, my neck and shoulders ached abominably, and my arms and wrists felt like they were tearing and my knees were hot to the touch and refused to bend..

Because of my lymphedema, my legs were propped up on pillows while I slept. I took some Panadol Osteo to help with the pain and only cooked a light dinner. 

I can now sit at my dining table and watch the birds which relaxes me so much. 

Notwithstanding that I had a fibro flare over putting the decals up, I think it was well worth it.

I think I've earned it!

 

You may recall I posted about my new wheels- my motorised scooter coming.. well it came this week! 

I have had a burl around the block and am very pleased with it. But I have had problems with health again and it's been hot, so I haven't been out a lot on it yet.

I have been waiting for it since December 11 last year. As it turns out, my case manager for my Aged Care package went on holiday and it was sitting in the warehouse waiting for her to clear it for delivery.

It's no use complaining and I am very grateful that I have it. My knees have been paining me very badly lately and my angina is causing my problems.

Adding having only one functioning lung and a hole in the heart and my swollen legs thanks to lymphedema, I guess I have earned it... lol 

Some more to add to the mix

 

I have another couple of issues to add to the mix. Lymphedema with skin changes similar to this picture above.

I also have sugars over 17 fasting and it's making me feel dreadful.

I have just changed doctors since the move and she has gone on vacation for two weeks. I need to go on insulin.. 

I have been putting castor oil on my legs and it seems to be stopping the scaling which hopefully will stop the legs getting infected. My right arm is also affected...

To add the final nail in my health, I have been suffering from costochondritis which is very sore.

With a fibromyalgia flare happening as well, I am truly feeling dreadful. Prayers would be very much appreciated.