A common thread

 

I recently saw this beautiful painting that evoked happy memories of both my childhood and my mothering days.

With a large family of seven to wash for, I usually washed three loads of laundry daily and hung it out.

So many years ago,  and a time when the days were long but the years were short. Now mostly a distant memory. I now longer can hang my clothes out.

Fibromyalgia and polymyalgia rheumatica has put paid to hanging the washing on the line. Flexing my sore muscles is so painful these days. I am forced to use the dryer.

I really loved the smell of line dried clothes and delighted in this painting with the children in the yard. 

Hanging the clothes out to me is synonymous with family life. It speaks of service to family, activity and life.

Globally, I think we can all concede that washing on the line is a common thread that unites the human family.

When you got no spoons everyone has to help!

So my respite from pain has come to a sorry end. I have been hit with the Mother of all Flares. Just breathing is too much effort and sleep is brief and light. The truck that hit me didn't even stop. 

I have been pacing myself majoring on keeping the dishes and the washing up to date. It hasn't been too difficult really as I have planned in advance for the inevitable fibromyalgia flare that comes after a respite.

Most people who don't suffer from fibromyalgia would call me a pessimist, but we Fibromites know how fickle our body is and how greedy it is for spoons. We never can have enough spoons to say we are energetic. Spoons are energy measures

It's enough to have enough spoons to take a shower some days, and we usually suffer after for it in spite of the pride in ourselves that we made the effort and did it..and the luxurious feeling that being dainty brings.

No, we are realists who accept that our bodies are treacherous. They lure us into a false sense of joy in a seeming abundance of spoons- well enough spoons to make us believe that we can change the sheets, bake a cake, vacuum the lounge room or go shopping. In real life shopping, not just on the computer.

Knowing better really, but delirious in the freedom that a few spoons brings, our joy knows no bounds and we actually dare to live like we did before Fibro claimed our lives, bodies and joy. And we keep living in the moment full of joie de vie until the joy and spoons are gone.  

No, I knew from 20 years experience that my respite from pain would be short-lived and it was.  But because of planning for it, it hasn't seen me in a total mess, overwhelmed with meals and mess.

I had my dishwasher and I kept up with the dishes. I did a load of washing a day and I dried it in the dryer. But my greatest life saver was my frozen dinners I have in the freezer. They saved the day.

In all honesty, though I haven't kept the house running smoothly all by myself. I have had to enlist Chris to help me with stacking and unstacking the dishwasher and I asked him to put his own clean clothes away as soon as they came out of the dryer.

He has been really good actually- a blessing really. He also encourages me to take a nana nap, and feeling so fatigued and sore, I am so glad. We all need a hand when we are feeling so wretched and when you got no spoons everyone has to help! 

My thermostat's broken!

 

Once I passed menopause, I thought I would be free of hot flushes and sweaty nights, waking up in a bed of sweat and feeling nauseous.

However, fate was not kind to me and as soon as I finished the menopause, I became ill with fibromyalgia.

To be honest, I am never at a normal temperature. On blood thinners for heart stents and antiphospholipid syndrome (or sticky blood), I feel the cold keenly and on any given day while everyone in my home wants to turn the heating off or down, I am there pleading my case for more heat.

Ten minutes after the heat is put up for my benefit, I have to turn it off again. I feel sick- I am sweaty and unwell.

About an hour before I go to bed, I turn my electric blanket on as I feel the cold so much. I sink into the warmth as it soothes my fibro muscle and spinal pain. A couple of hours later, I wake, sweaty, nauseous and out of sorts.

I strip the minkie blankets off but I feel cold so I put some back. Five minutes later, I am hot again and I stick one leg out of the blankets and fall sleep again.

This cycle of hot/cold repeats through the night. I am turning like a rotisserie chicken! Thanks to fibro, my thermostat's broken.

My cactus sofa

                            

We all like to find a comfortable place to sit or lie down. You know, somewhere to put one's feet up and just relax. But I am finding with my fibromyalgia flaring and my spinal problems that this is not easy.

No matter where I sit or however comfortable a chair looks, it's usually uncomfortable. Take for instance the new computer chair I recently bought to solve that problem.

It looked so suitable on the website and I was certain it would do the trick, but when it was finally assembled, it was not comfortable and it seemed to aggravate my lumbar region, making my legs go numb.

As far as furnishings go, the chair wasn't cheap and like so many things I have bought to relieve pain, it is not being used.

The lounge suite with recliner ends can't be used either. The recliners are so hard to get in and out of. Thanks to fibromyalgia giving me muscles the size of sparrows' knee caps, I cannot operate the side lever to bring the recliner footrest out.

If Chris helps me with that, I also cannot get out. I have no muscle power in my legs, thanks to fibro again, torn knees, and spinal problems. The only good thing it's for is to lay on.

And speaking of laying- even my bed is hard to get comfortable in. With muscle pain at an excruciating crescendo by the end of the day, no matter how I lay, it feels like I am trying to sleep on a concrete slab!

I only have panadol osteo for pain relief as my doctor is very hesitant to give me any and I will not take Valium as a muscle relaxant. I was addicted to it for years as it was the first thing they gave me in hospital for my many weeks of traction for my Schuermann's Disease.

Fibromyalgia is a pig of a disease/syndrome. It rules my life and leaves me nowhere to turn off and seek some comfort. When you couple that with another malady such as my ankylosing spondylitis, it drives one over the edge emotionally.

As someone in need of some pain relief and her doctor too afraid to order it, I am seriously considering changing doctors. Until that happens, you will find me lying on my cactus sofa.

A little time to slumber

                                                

A little time to slumber all my days spent in the sun,

My idle hands were folded my daily chores not done.

I wasn’t at all rebellious as into the sky I’d gaze,

I just left my daily duties as in the sun I bathed.

I read my book for hours dishes soaking in the sink,

The meat still in the freezer for I didn’t stop to think

What I needed for dinner it lay frozen in a lump;

I’d serve meat of something be it chops or steak or rump.

Just a minute of my surfing turned to hours of my day,

As I sat online chatting to people far away.

Imagine then my panic as at last I looked around,

To see the clock now telling  my man was homeward bound.

What a rush of my adrenaline making me quickly scamper

To launder clothes still waiting in the dirty laundry hamper.

The bed was pulled up in a hurry the dishes washed and left to dry,

As I boiled up some veggies and set the meat to fry.

Which would likely take forever for it hadn’t completely thawed

And I so wanted dinner ready as soon as my man hit the door.

Feeling very guilty as I served our dinner late
I decided my many forums would henceforth have to wait.

© Glenys Robyn Hicks

“Yet a little sleep, a little slumber, a little folding of the hands to sleep; so shall thy poverty come as one that travelleth; and thy want as an armed man” Proverbs 24:34

My Cleaning Schedule

           

As you know, I have now been approved for 2 hours of  home help a week. It has been a difficult time lately with a fibromyalgia flare that never seems to end. 

I have my sister here with us for the moment, so having some extra help especially in bedmaking, will help me immensely.

Just keeping the washing up to date, menu planning, cooking, dishes, food shopping, bill paying, and organising medicines for the week and ordering them from the doctor and chemist, is enough for me to cope with.

So this extra 2 hours will help me immensely. Maybe then my fibromyalgia flare will finally go away!

 

WEEK - MEL-6/9/2024

KITCHEN

MY BED AND CHRIS' BED

TOILETS/ ENSUITE

FLOORS

WEEK - TANYA -13/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS/ENSUITE

FLOORS

WEEK - MEL- 20/9/2024

KITCHEN

GUEST BED AND MY BED

TOILETS / SHOWER

FLOORS

WEEK - TANYA- 27/9/2024

KITCHEN

GUEST BED AND MY BED 

TOILETS / SHOWER

FLOORS

The only perk of being old

 

As you probably know, I have been feeling really unwell since I had RSV and this has coincided with a severe fibromyalgia flare from helping my sister move.

My Aged Care case manager came and visited me last week and she could see I wasn't coping too well with everything. 

She told me that I could have a cleaner come weekly instead of fortnightly from next week onwards. I was truly blessed to hear that.

I can have one of the beds changed each visit and alternate other chores like stovetop cleaning and shower cleaning.

It is good timing for me too. My Roombas have all died together... they seem to have a 2 year lifetime..

Anyway, knowing help is coming has lifted my spirits.  I guess getting the Aged Care Home Care package is the only perk of being old...

It doesn't take much!

As you know, we have my sister here with  us until she finds a new rented home. She's been here for 8 weeks now and I have been taking care of her.

My twin, like me, has fibromyalgia, heart and lung problems and has recently had RSV. It went through our house.

But until I am diagnosed, she is alone in suffering with Lupus. There's a question mark over whether or not I have it too. We are mirror image identical twins.

So suffice it to say, I have been looking after her and part of that is making sure she eats well. 

As I told you in a previous post nutrition can extend our life and certainly makes for a more pleasurable life. So I made sure my sister was eating lots of vegetables and fruits and red meat at least 3 times a week.

At her last doctors visit before moving in with us, she was told that the Lupus had made her very anemic so much so that she needed an iron infusion. She didn't cook much when she did cook... and sometimes her diet was not very nutritious. 

So, as I mentioned she's been with us for two months and her new doctor- (our doctor) ordered baseline blood tests. The results showed her iron has improved and she no longer needs an iron infusion.

This reinforced my belief that good plain homemade meals made from scratch with lots of vegetables and fruits, help extend one's life. The proof is there in the blood tests, for the life is in the blood. 

By eating well and staying well nourished, life can be made more enjoyable and prolonged. All it takes is a balanced diet and a little thought in purchasing our food. It doesn't take much! 

We walk that path together.

 

It's a sad fact that lately Chris and I wake up each morning feeling exhausted. We can sleep for 8 hours or sometimes 9 and still feel tired.

We ache all over and carry the "just woken up" brain fog all day. Our morning routine consists of bloods to check the blood sugar levels and then an insulin injection for Chris followed by a hearty breakfast of pills swallowed down with a nice cup of tea.

Our love language is spoons and our song of lamentation is that we don't have any or that it won't be sufficient for the day's activities. We live just to take another nana or grandpa nap.

Of course I have a double whammy of woes, with my diabetes and fibromyalgia. The pain never departs except for the brief few minutes Chris rubs my feet. I have the combined effects of peripheral neuropathy, in my toes especially and the foot pain that comes with fibro.

With ongoing chronic fatigue, I am certain to fall sleep just 5 minutes into my foot rub. I joke and tell Chris that these days it's better than sex!... only between us- I think it's true! I mean when everything hurts and it's hard to breathe with angina and pulmonary hypertension, foot rubs now are the only pleasure in life that steadies my breathing and still relaxes me..

And talking of breathing, that RSV flu type virus is still hanging around. Not as bad, but bad enough to have me keep my asthma puffers strategically placed at my dining table, computer desk and bedside. It too drains my energy and adds to the joy of a fibromyalgia flare.

Statistics show that more women have fibromyalgia than men, but I often wonder if Chris' chronic fatigue and constant body pains are indeed fibro... there's no particular test to find out, but it wouldn't surprise me at all...

Meanwhile, he lives the horrible life of a fibromite, but at least he doesn't have to validate himself with me. We walk that path together...

Not any time soon

 

These last few weeks have been difficult to say the least. We have been moving my sister in here until she finds a new home for rent. With fibromyalgia flaring, the spoons have not even been seen.

To top it off, RSV has been in our house and we have been knocked down like flies.With Chris, Julie and I all suffering from heart and lung problems, RSV hit us hard.

I caught it off my great-granddaughter when she came for a visit a week before she developed symptoms. Being a sharing person, she passed it on to her mother, Chris and Julie then me.

Chris only had symptoms like a bad cold and was ill for about a week, I was very ill with it lasting two weeks and Julie was sickest of all with hers lasting three weeks. Julie has lupus so it played havoc with her health.

This is not a virus to be played with. It honestly nearly carried Julie and I off. Julie told me it was worse than when she had Covid. I can only attest that it made me sicker than when I had pneumonia. I have never had Covid, and I tested myself at my sickest point. It was negative.

Now I am feeling a bit better but it has left me very exhausted and requiring frequent rests and/or nana naps. Maybe it's that and my fibromyalgia flaring. It was hard work moving my sister..

So to today: I am slowing trying to get my home into order. My floors need vaccuuming and mopping. My toilets are in need of a good clean and I need to conquer Dish City and Mt Laundry.

I will get there but not any time soon.