On 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.

Basking in a new world

Over the years, I have spent many a time in a hospital bed.  For weeks at a time, I would lie in traction with Scheurmann's Disease, with hardly a visitor to see me.

I recall every time my mother came in to see me, she would ask if my (then) husband had been in. The answer was no. In fact, he would drop me off at the hospital entrance and then take off speedily. I would only see him again when I got home.

It got so bad that I would never let him know that I was trying to pass a kidney stone or needed another bout of traction until the moment I had to be admitted for treatment. Then all hell would break loose. It was just a sad state of life wherein I wasn't noticed or wanted until a meal had to be cooked or a shirt ironed.

Of course, I would lay internalising why he wouldn't visit me, and the end result was captured in one solitary, heart breaking and mind numbing word: rejection.

In between hospital stays, I limped along life, serving my husband and family, yet feeling terribly alone and miserable.

In the course of time I left my abusive husband and married Chris 4 years after leaving. All came crashing around my ears when I got fibromyalgia. 

I came home from seeing my rheumatologist for my wide range chronic pain and fatigue, and along with a negative result for lupus, came the diagnosis of fibromyalgia.  The trip home seemed unbearably long as I rehearsed in my mind the scene of rejection again awaiting me with this latest news.

You can imagine my amazement when Chris made me a cup of tea as he listened to the diagnosis. He was the epitome of compassion and love. When he handed me my cup, he was astonished to see me burst into tears: not tears of pain like before, but tears of love, happiness and relief!

Holding me against himself, he said he was so relieved I didn't have lupus, and vowed to help me in any way he could with this new thing called fibromyalgia. 

He was true to his word and together we learned about this new enemy that threatened to destroy my happiness. We vowed to never give it the power over us to come between us.

Twenty two years later, we speak in terms of spoons and nana naps and Lists. Pacing and paracetamol and heat pads are our love language.  

As for the young woman watching out for her husband from behind the curtain: she has gone now, to be replaced by an older happier woman basking in a new world of love and that vital word for all fibromites: validation. 

In my dreams!

Ever since I was a young girl, I have dreamed of being an energetic housewife, baking and cooking from scratch. I would keep an immaculate house as well and my washing would be as white as snow.

Of course, I would iron everything that was on the line and my pantry shelves would be well organised with the spices kept in alphabetical order. And it was so for the first two years of my first  marriage.

But then much sickness came into my life, heralded by displaced discs and Scheurmann's Disease, and the dream evaporated as quickly as my energy and eroded discs.

This dream kept springing back in fits of discontent with myself and no small amount of false guilt. With the onset of heart disease, diabetes and fibromyalgia, the dream became a nightmare that taunted me. 

Perfectionism pointed its' knobbly finger at me, taunting me and demanding I try harder. It insisted that I find my worth in my homemaking abilities as a woman, and I was miserable as well as in pain.

It took until I was into my 20th year with fibromyalgia to realise that my worth as a woman was not on how well I kept my house. 

I decided to focus on the fact that God loves me just as I am and that helped remove the false guilt.

So now, in my 67th year, and my maladies worsening, I have had to put the dream to rest. I am never going to be the woman of my dreams. I have someone come to clean for me once every two weeks and I have learned to be grateful.

Only in accepting your illness can you find peace. Our womanhood is not only about keeping an immaculate house. And as I look at my clean house today, I am glad that we have the Aged care package that allows home care help. 

As I talk to you now, I smile at the irony: my energy comes through the woman who cleans, and my home is still clean. I have a maid in my later years- and that's something I thought would only come to be in my dreams! 

Today's lists of to do's are:

Make our bed

Do a load of washing

Fold yesterday's clothes

Make a sweet curry stew with rice for dinner

Light at the end of the tunnel

The Victorian Government has lifted some of the Corona Virus restrictions for us. Although Chris and I will be taking it slower than the recommendations, we are glad that there will be a little more freedom for everyone.

My fibromyalgia is badly effected by the stormy conditions we have had in the last few days, and I have not blogged because frankly I have done nothing here at home.

It is so hard to function when you wake up with no spoons. Today, I have managed to get dressed. Not bathed or showered- just dressed.

I will be cooking chicken chow mein for dinner and that's it!

I have experienced a new thing with my fibro: my tendons in my arms feel like they are tearing when I extend my arms. Truly excruciating! Plus I have pain in my sternum which is mimicking heart pain. I find no relief taking my Anginine tablets so I think it is the fibromyalgia.

I hate fibro with a passion: it is as debilitating as the Scheurmann's Disease back pain I endured before it finally fizzled out and my vertebrae recalcified or whatever they do to heal. Ten years in the making, whatever it was. With only a slight curveture and a foot that points inwards.

So, fibromyalia seems to be set to stay as my thorn in the side. But I won't let it snatch my joy away in knowing the virus seems to be controlled. At least with that there's light at the end of the tunnel.