Play it in your own time!

 

As we shared before, I am supposed to be getting help in cleaning our home. But it has turned into a mess and I have fallen in the cracks. There was a woman who came for three weeks, but she was woefully indolent and a liar.

We are paying a co-payment to have her clean for two hours a week and sadly she wasn't worth the money.

For the first half hour she chatted and I had to bring her gently back to why she was here. Then she bustled around and "cleaned" stuff. 

When I say "cleaned" I am being generous. We could see no difference in our home cleanliness even after she was gone.

Chris was ill and in our bed, so I said to her that she needn't worry about changing it this visit. I asked her to pay particular care in the bathroom as it was looking like it needed a good clean. Particularly the bath. And I wanted the vinyl floors washed.

With half an hour to go, she came out and sat on the living room carpet in front of our beautiful backyard and watched the birds and played Candy Crush on her phone.

Knowing that she hadn't done much I asked her if she had cleaned the bathroom and toilet. She nearly shook her head off in affirmation. I had my doubts though.

I asked her if she had mopped the floors and she said "You don't really want them washed today, do you? They still look clean!" 

When her knock off time came, I begrudgingly signed the paperwork, confirming she had been.

Suspicious, I went into the bathroom. There was my hair still in the bath, the cap of the shampoo on the floor of the shower and Chris's whiskers in the hand basin. There was a cotton bud on the floor.

I took a quick look at the toilet too. How can I put this delicately? I can't. There was grunge still at the back of it. So without changing our bed or mopping the floors or doing the bathroom and toilet, she spent a total of one hour vacuuming our very small home. I was angry. I hate being lied to.

That afternoon, I rang my aged home care co-ordinator and told her what had happened. If they couldn't replace her, I would prefer none. I didn't want her back in my house.

So five weeks passed and I heard nothing. Turns out the home care case manager for me has been off for the last three weeks and I have fallen between the cracks.

So when I get someone to help me is anyone's guess. And for me, it can't come sooner. Not that our home looks like a burgler has ransacked it. I keep it tidy and it is always decluttered.

But my home is dirty. As any homemaker will tell you- it effects how you feel. And physically with the fibromyalgia flare brought on by driving a lot last week, it sucks even more.

There's not much I can do but wait again and hope they send me someone who has a decent work ethic.

Though from what I have heard, none of them does a really good job.

But as Sacrificial HomeKeepers know, we have to ditch perfectionism and accept that anything is better than nothing. Except the home carer who used our money to play Candy Crush in my living room. 

She should play it in  her own time!

He who is slothful in his work is a brother to him who is a great destroyer. Proverbs 31:9

A boring home life

It's Tuesday morning here. I have just finished putting the groceries I got online away. It's so convenient for Chris and I seeing as we both are unwell

I have done a  load of washing and am thinking about doing some lunch. Toasted cheese and tomato sangers sounds good and easy.  

My kitchen needs to be cleaned but I am out of spoons as I didn't sleep well last night. The weather is changing as it's autumn here and we can experience all seasons in one day. It plays havoc with my fibromyalgia. It's making me feel miserable.

I am thinking of taking a nana nap before I do the kitchen. But before that I will take some Panadol Osteo   to help relieve my fibro pain. Pacing and resting are not an option with fibromyalgia: it's a necessity. 

After I clean the kitchen I will cook chow mein and rice for dinner and if I have enough spoons I will fold the day's clean clothes and put them away.

It's a boring day here and I am glad. When you think of what's happening in the world, I can truly gratefully say that God has blessed me with a good but boring home life! 

Russian roulette

 

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

It's a game of Russian roulette to take a gamble of feeling better after a nana nap. Waking up can go either way.

Are you willing to gamble reliving morning muscle pain again? Lotsa luck!

I'm a plain Jane!

Each morning when I get dressed, I wonder what the day will bring.  I have learned over the course of time that those days when I have a pyjama day, something crops up and I have to don days clothes in a hurry. So I try to get dressed early in the morning.

I don't worry with makeup and just brush my hair. I have dresses that have sleeves and some that don't. So I can dress according to the weather. Or according to my rapid body temperature. Thanks to fibromyalgia, my thermostat's broken.

Not a great fan of jewellery, I just wear my wedding ring and usually I just wear some stud earrings of a matching colour as my dress. Usually I am home, so I have some pretty bibbed aprons that I match up with the colour of the day.

Most times because of foot swelling, I go around the house barefoot, but I do have some black Skechers I wear when I go out. I don't wear socks or stockings. 

These clothes work well for me- tidy, plain and modest and easy to wear and wash. No ironing. 

I would love to have long hair but I lost a lot of it due to illness and now I find it easier on my arms to keep it short. My polymyalgia won't allow me to raise  my arms, so my hair's short.  I wear it in a pixi style which is like my clothes, easy to manage.

I would say my style is plain but tidy. And when you are chronically ill and in pain, it is enough. 

It's a good job today's clothing is not reliant on stays and corsets and many buttons and ruffles, because I just couldn't stand long enough to get it all right and I just don't have the patience. Also, I need to breathe freely and I know I couldn't with a corset! 

I really aren't that great to look at, but I look feminine and that and clean, tidy and modest is OK. I guess you could call me a plain Jane! 

A permanent thing

 

So I haven't been feeling the love for weeks now. In fact I seem to be enduring the mother of all flares with slight variations on the depth of the flare.

My polymyalgia rheumatica seems to be going but the fibromyalgia pains and fatigue and brain fog are still draining me with their presence.

I wonder when the fibromyalgia pains will abate like my PMR. But they don't. Ever.

So I was reading over the blog trying to recall how long this current flare has been going on, and it was no surprise that it has come hot on the heels of the one before that. In fact, I don't think it ever went.

I got to thinking that maybe they aren't true flares. Maybe it's one continual run of severe pain with only a slightly better day thrown in here and there. But no real breakthrough. It makes sense.

It makes sense that's why I constantly start each day in severe pain and enjoy no spoons to think of because I am in a major flare. One that never goes away.

The only difference between "flares" is that I may have managed to chuck some washing in the machine or put a couple of appliances back where they belong. So I consider myself not flaring.

The only time I get any relief is when Chris rubs my sore feet- and fibromyalgia also is to blame for that, vying with peripheral neuropathy from my diabetes.  I usually fall asleep for a little while.

Sleeping brings no real relief as I wake myself in pain trying to move in my bed. It's a viscious cycle.

I hear so much about having a rest or nana nap when it gets really bad, but any Fibromite will tell you that you often wake up worse than before and your muscles feel like it's early morning again.

If I did manage to get comfortable I think bed could easily become a permanent thing- along with my so called fibromyalgia flares. Because they definitely are for me, a permanent thing...

It's gonna be a PJ's day.

 

The rain is pouring down but it's not cold just pleasantly warm after the last few days of summer heat. Xena is still asleep on my bed.

Chris is watching TV and I have got the breakfast dishes soaking in hot soapy water. The house is tidy and cosy. Life is good.

I woke up early and left Chris to sleep. I heard the birds calling each other and watched as my beloved magpies came down searching for some left over sausage among the rice dish I put out for them last night.

Carefully opening the sliding door that opens to the garden where they congregate waiting for me to feed them, they sat only inches away from me. Gradually they are coming closer to feeding from my hand. 

The washing machine is churning away at the load of clothes I am washing. I try to do a load a day so as not to use up all my spoons in one hit, folding them and putting them away. 

People with fibromyalgia would understand the need to pace oneself in order to achieve some completion of household tasks. There's so much job satisfaction in even doing one load of washing and putting it away. 

I have some steak thawing for dinner tonight. I am planning on cooking a vegetable intensive beef stew.

With the cooler weather and rain, the menu begs for a stew...

I still haven't changed out of my pajamas and it's 1pm but I don't really care. We aren't going anywhere and I am feeling pretty laid back and a tad achy. It's the change in weather.

It was a pretty slow but pleasant morning with Chris making me some breakfast and a cup of tea. The panadol is kicking in helping me with the aches and pains of fibromyalgia that's reacting to the weather change, but I am glad to report that it's not a fibro flare per se.

So in spite of aches and pains, I am feeling pretty good today, but even so, it's gonna be a PJ's day. 

She was right!

You may remember that I had to give up knitting and crocheting as it hurt my hands too much. It was so disappointing!

I was visiting my twin sister one day and I found her crocheting a beautiful baby shawl. Now her hands are sore with her lupus and arthritis, and when I asked her how she managed and  told her I could not longer knit or crochet, she encouraged me to take it up again. 

She assured me that her hands had improved since she took up her handcrafts again, and I resolved to give it a try. My hands improved and I had better flexibility in my hands and wrists. I was rapt! I needed to do something creative and those last few months.

With fibromyalgia it is important to find something to take my mind off pain, and I find knitting or crocheting does that to some degree. I also believe it is healthy and very satisfying to be creative and I have knitted, crocheted or sewn many gifts for family and friends over a lifetime.

I also enjoy blogging and so I thought to create a new one, highlighting a lot of those creations, mainly to remind myself of happy hours making and giving each one.

Currently I am working on making baby shawls and jackets for my grandchildren to use for their own children when the time is right... an heirloom gift or legacy if you will.

With being 71 years of age, I obviously don't know how long I will be able to continue doing this, so I am working on them now, either giving them directly to those old enough to keep them themselves, or to their mothers to keep until the time is right.

I hope you enjoy looking at my creations...

Keep clicking and stitching,

Glenys                    

 https://nanasclicksandstitches.blogspot.com/

It's a double whammy!

I am flat out resting today, trying to cope with the pain of a flare of fibromyalgia and polymyalgia rheumatica.

Honestly, it's hard enough coping with fibromyalgia flares, let alone PMR as well. And to make it more difficult it's Easter and there are no doctors available, and it doesn't seem to be urgent enough for ER.

Usually PMR fizzles out after about 5 years, but I have had it on and off for 20, often at first mistaken for fibromyalgia. 

My doctor told me that often it leaves the sufferer with neck and shoulder arthritis, but rarely, it can last a lifetime. Lucky me.

The treatment for PMR is prednisolone but I am wondering if I should take it without my doctor's permission. I have to remember that it elevates my sugars and they have  already gotten higher without it.

After a miserable night's sleep, I took a Tramadol which has helped a little. I took paracetamol as a baseline.. I will most likely have a nana nap soon.

The fibromyalgia is making my knees and back ache and where that lies off, my neck and shoulders and jaw with pounding headache take over thanks to the polymyaglia...

All in all, I am a mess and tired of feeling like this... PMR and fibro are bad enough separately, but this is the worst of all- a double whammy! 

Sitting down brings no comfort

 

Over the years of chronic illness, I have noticed that what used to be a reward for spending spoons and being proactive was in having a comfortable place to sit.

Gradually the places that once gave me a comfortable sitting have become objects of pain. My armchair, couch or sofa, typist chair, dining chair and car seats have all become places of torture and there's no reward or rest found in them.

Like wise, my bed also yields no comfort to my fibro effected muscles or my spinal pain.. it can't be the furniture's fault.

I think the fault lies in my allodynia which is pain on the lightest of touch. It is often a part of fibromyalgia and/or diabetes neuropathy. There is no cure.

I cannot take many tablets that are commonly prescribed for fibromyalgia, such as Lyrica so I have had to find something that helps with the pain. 

With both peripheral neuropathy from diabetes and fibromyalgia, and with constant knee pain, I find the only time I can completely relax is when I am lying on my couch and Chris is rubbing my swollen feet. The swelling is from heart failure.

The massage seems to distract the nerve path that interprets pain and replaces it with a pleasurable sensation, allowing me to often drift off to sleep.

I know it's sad that a foot rub is the only help for me at this stage of my life, but it is what it is. And it is good for me as sitting down brings no comfort. 

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.

Here’s what works for my fibromyalgia blogger friends

• Cynthia from The Disabled Diva shares her top tips
• Shelly from ChronicMom blog shares her #1 recommendation
• Australian Sacrificial Home Keeper on tricks to help cooking  
• Mandy and Michele on their preferred medication
• Lee Good, who is discovering what works to help Fibromyalgia at Fibro Files 
• Katie from Painfully Living shares what’s worked for her
• Sue at Rebuilding Wellness blog shares her top tips
• Carrie shares her top tips at My Several Worlds blog
• Bettina shares what works for her in the hope that it will work for you
• Nikki from the Brainless Blogger shares her top tips
• Bethan from Hello Fibro Blog shares what she’s learnt since diagnosis
• Cynthia from My Inspired Fibro Life shares her tips
• Donna over at Fed up with Fatigue writes about the beneficial fibromyalgia treatments she’s used since diagnosis

It was good while it lasted!

So yesterday I woke up without the usual muscle pain and fatigue that characterises fibromyalgia.

I sensed that I had some spoons in abundance and I was in a quandary as to how I could best utilise them without giving myself a flare the next day.

I decided it would be sensible to pace myself which is what I did at first... I say at first because like all good intentions, they can fall by the wayside. And they did.

There was so much I had put on the back burner and left undone. But then it was a long time since I had any energy and to be honest, I was so used to living with chronic illness and fatigue that feeling energised seemed "abnormal"

So I started a load of washing and cleaned out Xena our cat's litter tray. Then I hung out the finished  load of whites... also something I have had to forgo due to no spoons and pain.

I rummaged through the fridge and cleaned out the out of date food. Then, remembering to pace myself, I made a cup of tea for us both and decided we needed some cookies to have for afternoon tea.

After I made a batch of cookies for the afternoon, I brought in my washing. It dried quickly because the weather has been rather warm.  Too warm in fact.

By the time I came back inside, I was wilting. My spoons were dissipating! Quickly! 

My muscles and back started paining me and it hurt to turn my neck thanks to polymyalgia rheumatica.

I left the clothes in the laundry trolley and kissed thoughts of ironing my pillow cases goodbye. I had so wanted to do that too... just one of the jobs that I had to put on the back burner, put back again..

Chris made me a cup of tea and I took some Tramadol. I only use them for top of the range fibro flares and knee pain.

As I sat sipping my tea and waiting for the Tramadol to work, I realised that I hadn't got much done in spite of some spoons. 

Xena had a clean litter tray. We had some cookies to wash the tablets down. The fridge had no science experiments but didn't get a thorough clean. And I hurt so badly for so little! 

If I ever get another day with some spoons, I will not bother to hang the washing out... I nearly always use the dryer since fibromyalgia found me. And I know my poor old broken knees will thank me for not walking so far up the back garden to the line.

I guess I can sleep on unironed pillowcases.. it has been known  to happen! And as the pain relief finally kicked in, I decided that you can't really win with spoons. They are devious little dictators!

Chronic illness is not for wimps and I refuse to give in to depression. I think all things considered, I do a reasonable job of keeping our home nice. 

Still it was great to wake feeling refreshed and alive! It was good while it lasted! 

He's getting very rusty!

 

So I have been hobbling around with both knees paining me badly and hot as fire.

Last Wednesday I emptied the kitchen garbage bin in to the big wheelie bin for the rubbish collection. 

Wearing my nightdress and short dressing gown, I realised that if I bent over to pick up some of the rubbish that had fallen out, that my neighbours would probably get a good view of my bottom.

The remote garage door was up to allow me to pass behind the car, so I decided to be merciful to them and I bent at the knees to be more lady-like. Big mistake!

Both my knees popped out of alignment similtaneously and I actually gave a short scream! I staggered into the house and had a cry as I searched for my Tramadol which I keep for major fibromyalgia flares.

I  nursed my knees all week and they still are sore and hot and threaten to pop out of alignment at the drop of a hat.

It's hard to do much with knees that both have no ligaments to support them and no end in sight as surgery is too risky with all my co-morbidities.

So as long as I can keep shuffling I am OK but even so, it's more difficult by the day and I walk like Tin Man on the Wizard of Oz. Only now he's getting very rusty! 

 

I am not lazy!

 

So I am often low on spoons and it necessitates a hands on approach. I must pace myself and rest up in the hope that I can find some spoons from somewhere in order to do the needful.

Usually by the end of the day, you will find me resting in my recliner rocker or in bed. Especially when I have a fibromyalgia flare or a bad day with breathing difficulties.

Apart from the usual taunts such as "but you don't look sick" and the need to validate my need for rest, I find that the latest taunt is "you are so lazy!"

But appearances can be deceiving. If I were truly lazy I wouldn't even be resting or pacing myself in order to do a household task or cook a meal. I wouldn't even be entertaining the thought of cleaning or cooking.

People presuming to know my situation are often getting it all wrong.  And it used to hurt. But these days, I have decided to let it run off my back like water off a duck. 

I no longer let those unkind remarks get to me... Chris and I know the truth and that's all that matters.

Like looking well when I feel like death warmed over, resting to enable a task to be done does not mean I am indolent or don't care about my husband or my home.

Taking care of myself in order to take care of others may appear selfish. But nothing can be further from the truth: I am not lazy! 

The power of a nana nap

 

So over my last 25 years of chronic illness my level of energy is often very low. Heart failure, pulmonary hyertension and particularly fibromyalgia rob me of my spoons and dictate the need to sleep.

I have found that it is best value for me to take a short nap- a nana nap of no more than 40 minutes. If I sleep for longer than that, I find I can't sleep soundly at night.

First clue for a night of non restorative sleep for me is the inability to go to bed at a reasonable hour- for me it is 11pm. I simply feel too stimulated to relax and go to bed. 

Being a night owl for me means pain tomorrow. I simply can't function properly if I have gone to bed late, even if I stay in bed till later.

Apparently this has something to do with our circadian rhythm and my rheumatologist told me that every hour we sleep before midnight equates to two more than after midnight...

I have been purposely taking a break in a short nana nap for a few weeks now and I find I am waking up feeling strong enough to do some chore or another that I haven't been able to get to...

If I go to bed and sleep for a few hours, which is easy to do when one is chronically fatigued, I often find I wake up feeling disoriented, giddy and generally out of sorts.

If I sleep a lot during the day, I obviously can't sleep properly during the night. So by having a planned nana nap as opposed to a long sleep, I find better value and easier deeper sleep at night.

In order to influence my body into having a nap as opposed to a full long sleep in the day, I now lay on the couch. Chris rubs my swollen feet and very soon I drift off to sleep. And for some reason, my body only sleeps for about 40 minutes. If I actually go to bed, I will sleep up to 3 hours...

By planned sleep routines, I can release more of the power of a nana nap.

Xena's still upset with me!

For those of you who follow my sister blog, Morning Cuppas With Glenys, you may recall that recently I had to rescue a sparrow from our little white cat, Xena's mouth.

Although it's been 2 weeks since that rescue, my relationship with her has gone south! She ignores me. When she lays on the floor in front of me, she keeps her back to me and if she walks past me on my computer desk, she presents her bottom to me as she passes me to drink from her drinking fountain on my desk.

I can't work out why she's so upset and why her grudge has continued for so long. She is well fed so the bird affair must have been for sheer pleasure of the hunt. And although the hunt was successful, she didn't get to enjoy the fruit of it...

Maybe she was trying  to please me by bringing this poor bird home like the time she brought home a dead mouse and laid it on my back doorstep.. perhaps my rejection has hurt her feline feelings...

With a very nasty fibromyalgia flare and extreme fatigue, I have been having frequent nana naps and she does still come into bed with me...

But the feeling of companionship is lacking now and I want it back. But how does one say sorry to a cat?

I fear that our relationship is permanently damaged and I am fully expecting her to put out her tongue at me to air her feelings..

I am checking her little claws as she sometimes accidentally scratches me in the night when she's curled up beside me. 

Come to think of it, maybe it's not accidental- maybe she's still fuming... I will never know. What I do know though, is that Xena's still upset with me! 

I am looking up!

So the trip last Wednesday to pick out a bed and walker and then to finish some errands that were necessary saw me with a major fibromyalgia flare.

I had to go in person to chose the adjustable bed that will hopefully help me sleep better and bring down the swelling in my legs and feet. It was necessary to try out the various mattresses and models to make a good choice.

In the end, I chose a non divided queen size medium mattress with a padded bamboo topper. This should help with the fibro muscle pain and still support my sore back. 

After that I had to try out various walkers and walk around with it. It was exhausting.

This pulmonary hypertension is literally sucking the life out of me.  It is harder than ever to walk as my breathing is effected. That, plus the hole in my heart is leaching the oxygen out of my blood cells..It makes me suffer from dizzy spells and I have to grab onto something to stop falling over ..

So today and yesterday I have been sitting down a lot. Normally I sit in front of our kitchen window which is very sunny and has a good outlook. I love watching the white cabbage moths and the birds in our back yard. It sooths me as it's very relaxing. 

It's easy to be depressed. But I don't want to stay there. While there's life, there's hope. And speaking of hope, I have been praying and thanking God that I am His child. The hope of Jesus coming for His Church, His Bride in the Rapture is a real hope to cling to.  

His love and His promise to keep me and bring me to Himself keeps me going. And as I sit here in the window sunlight, you can be sure I am looking up.

I'm in love with my new maidservant

As you probably know, I cannot bend anymore. Thanks to back issues and torn knee ligaments, bending is a thing of the past.

I had a front loader and it was so difficult bending to load and unload it that I opted to sell it and buy a top loader.

As I am 4' 10", I have problems getting garments out of large machines, but I need one large enough to wash my doona and pillow in.

I ordered a 8kgs Haier machine and I am so pleased with it. It is large enough to wash bedding and yet small enough that I don't need a step ladder to reach inside it.

Muscle pain from fibromyalgia and polymyalgia rheumatica is lessened with washing with this new machine as I am not bending as with the older one or stretching to fetch a left over sock in the tub...

It probably is silly to some people that I post about my new maidservant, but it has saved me quite a lot of pain and expense. To wash bedding, I used to have to go to the laundrymat, which is very pricey these days.

It actually is a thrill to be able to add the leftover facewasher or something into the already started load and I love watching the clothes move smoothly around the tub. Unlike the front loader which just made me ill if I watched it too long...

I didn't realise how much I missed the simple pleasures of watching the clothes come clean. I guess you can say I'm in love with my new maidservant!