Devious little dictators.

 

Well, today I woke up with some spoons! As I sit here talking to you, I have a list of things I want to achieve. But I have to treat spoons with respect, or they will be my undoing.

Having spoons is so novel and rare, that I find instead of rejoicing, I am afraid. "Why would you be afraid of having some spoons?!" you ask. Good question.

Feeling energy or having spoons is so unusual and longed for, but it's fraught with dangers for the unwary. Dangers of overdoing and ending up with no spoons not only for tomorrow, but a few days after.

Spoons have the ability to dictate your life: you must treat them with respect. The desire to run with them is sometimes overwhelming. The urge to clean, shop or socialise is great. It can consume you.

And spoons will consume you, if not treated with respect. By respect I mean, circumspect and planned activity. For if given into, the spoons will not only be evaporate quickly, but so will your joy, optimism and future few days.

Like a lion tamer, appreciate the power behind these beasts, and hold them back with whip and chair if necessary. They will then serve you well, if allowed some calculated leeway as you pace yourself in small bursts.

Remembering to pace oneself is so critical to enjoying those spoons. And surely, spoons or extra energy should be an occasion to rejoice, but given that they have the  power to rule you , for the unwary, they can be devious little dictators

The spoons have won!

I have been trying to become a night owl. It seems that everything comes together after dinner.

The morning stiffness is gone, the pills have kicked in but the clock says it's bedtime. I am not ready to go.

My thinking is clearer after dinner. And the wisdom that comes from twenty plus years of fibro and chronic illness has kissed me on the face and whispered, "Stay with me. The night is but a pup!" and I have tried staying.

I have persisted in being a night owl until the book falls over my face, or I have woken with a start because my head has dropped onto my chest as I have fallen asleep in front of the TV or computer. And this has set the tone for the next day. 

It is not unheard of for me to fall asleep in the passenger seat, garrotting myself with the seat belt as Chris drives us to an appointment or shopping. The midnight productive hours have not equipped me for a fruitful, productive day and I find myself fantasizing about my bed.

The day seems so long, and half way through, I succumb to bone weariness and crawl into my bed. The night owl has flown to sleep until evening, and though I could sleep until then, I know it's not likely.

You could say that the circadian rhythm has won. As much as I would like to be a night owl, fibromyalgia and other illnesses will call the shots and a nighttime ritual of early retirings  will be in order. Just to survive the next day. Just to have some spoons!

After a recurrence of fibro flares, I can see that for me, being a night owl is not an option and I am better off having a regular bedtime. The circadian rhythm has won! And by dictating my lifestyle choices, so have the spoons!

 

I hope his mother's not nearby!

So I went into my laundry to check on my dryer. Out of the corner of my eye, I saw something move very, very fast from Xena's litter tray area.

Moving the laundry hamper out of the way, I saw a brown baby snake. He looked like a worm but he had a fat head of the snake variety.

I knew it wasn't a worm because he was too fast and as I watched him, he slithered back under the door into the back yard.

Flinging open the door, I thumped my broom to scare him away, but he had already disappeared. Probably under the house.

There's a half inch gap under the back door. Enough for a baby snake to get in. Chris is going to fix a metal door draught stopper strip along the underside of it.

It's made me slightly (much) frightened. Not that I wasn't expecting to run into a snake eventually with living in the country. I just didn't expect that it would be in my home!

I hate snakes and confess to momentarily thinking of moving or burning the house down! But I quickly came to my senses.  I hope his mother's not nearby! 

At least it has a name!

Most of us  have waited  many years for a  fibromyalgia diagnosis.  Meanwhile while we wait,  we have been  treated as malingers and have often been  offered ill  informed advice from  people who don't even understand what  fibromyalgia is.  Many of us have been  dismissed by doctors or told it is all in our heads as they write a referral to a psychiatrist! 

We Fibromites know it's not in our heads but our muscles, tendons, neck, knees, and joints. We can hardly stay awake in the daytime, and given that we can't even sleep at night in comfort, we are often sleep deprived and anxious as we await our diagnosis. One that we are hoping will be key in helping overcome this horrid syndrome as well as validate our pain to others. 

All these things prior to diagnosis are all brutal in their own way. And most pain relief does not really help us even after a diagnosis of fibromyalgia. The pain is debilitating. So are the flares which are limiting. The spoons for daily living are scarce. Or non existent. 

It hurts us further that the fibro fog that robs us not only of clear thought but words, is the only thing that people can notice. All other stuff is invisible therefore to some our pain doesn't exist, especially as we usually don't look sick... 

As there's no cure and very little that helps, our life doesn't change much after a diagnosis of fibro.. but even so, it is some small comfort that at least it has a name! 

 

Another repeat: flarus maximus

 

I am beside myself in pain with my fibromyalgia. My muscles are feeling like they are being shredded as I move them. It is agony to extend them and typing kills me...

The weather has been inclement- very changeable with summer/winter in one day and frequent showers. It plays havoc with my fibromyalgia.

I am done in. Truly done in. I cannot stand the pain and need to sleep forever... yes. forever. just to escape. the. pain. and I painfully talk to you,  tapping out letters like a woodpecker. 

The depression and sense of failure threatens to overwhelm my consciousness: I have no friends to speak of for I only have enough emotional energy today to try to continue to exist without taking all of Chris's Tramadol as a desperate way of going on... or not.

It's a lonely path.  However,  I just realised that I do have a friend who requires no emotion of me: my bed. Yes it's my one only true friend at the moment.  I am giving in. Today is going to be cancelled due to my "flarus maximus".

I just want to stay in bed!

So today I woke with everything aching and no spoons. Yes, another flare of fibromyalgia. Actually, I am pretty sure my body is permanently flaring, it's just a bad day. Another one.

Everything within me says that I should stay in bed, but today is our grandson's birthday and a BBQ has been organised. I simply have to go.

So far, I have showered, dressed and breakfasted. The shower almost killed me this morning. The water felt like thousands of needles pricking my sensitive skin and it was a real effort to raise my arms to wash my hair.

I was so worn out by the end of my drying off that I had to lay down for a bit. Dressing came much later, as did taking our bloods and administering Chris's insulin injection.

We have to leave soon and we are fortunate in that our hosts live close by. A long drive today would be too off putting and we usually love going on long drives. But not today.

When we get home I will be doing a light dinner for us and that is all. It has to be. And I have to be content with that.

Fellow fibromites will know that when you have no spoons, even breathing is an effort. If it wasn't for making memories today, I would be content with posting this and going to bed. I just want to stay in bed! 

 

A bit of a wash then au revoir!

So today our fifth wheeler is getting cleaned on the inside and after that we are going to take it to get cleaned outside and put it up for sale.

I have mixed feelings about it really. Our dreams of touring round Australia turned to dust when I tore my meniscus in my left knee and since then I have also damaged my right knee. I walk like Tin Man in the Wizard of Oz! 

The RV was well suited to the Fibromyalgia lifestyle as it was small and easy to clean. But after tearing my meniscus, even the two steps to the bedroom and ensuite were too difficult to negotiate. In the end, I was housebound as it has seven steps at the entry.

We haven't thrown out the idea of travelling altogether. Eventually after selling the fiver, we will buy a campervan that is easy for me to get in and out of and go away for weekends. That is the hope anyway.

Today's to do list:

•  I have dishes to do, 
•  make our bed
• fold a load of washing from yesterday.
• Fish, chips and salad for dinner

I'm not lazy!

You would not believe over the years how many people have shown their ignorance of fibromyalgia by gasping in horror when I say I do not have the strength or muscle power to even sweep my floor.

Because fibromyalgia is an invisible illness, people often think (and sometimes even voice) that I am lazy and a malingerer.

They cannot see the pain as my muscles and ligaments feel like they are tearing. The pain in my neck and shoulders and arms can be intense and it can last long after the floor has been swept.

Usually, it's my lack of spoons that stops me from doing cleaning, but it's muscular as well most times. I do have muscles, but they are like sparrows' knee caps! 

I honestly can no longer sweep, mop or vacuum. It sometimes gets to me because I know how most people think. Nevertheless, it is I who has to bear the pain of those tasks and the pain robs me of my rest and often is carried into the next day.

There are so many muscles involved in sweeping, mopping and vacuuming that come in to play with repetitious movements. Because they aren't used often, they whine and complain loudly.

Rather than pick up my broom I would rather put up with the rolling eyes and snide remarks of people who haven't even heard of fibromyalgia. I know what it is. I know who and what I am. And it's not lazy.

Today's tasks are:

• one load of washing
• Cook spaghetti bolognaise for dinner

When I do, I don't!

 

When I was a young woman, I ironed clothes as soon as they were bought in from the line. It was something as regular as clock work.

Gradually as the babies came and later on, spinal problems, it dwindled until I only ironed what was strictly necessary, that is- what was seen.

Twenty three years ago, my iron was kept in the linen press and only saw the light of day for service on a high holiday such as a wedding or funeral! 

As fibromyalgia overtook my life and abilities, my iron was boxed for posterity and now serves as a door stop to keep my back laundry door open when the dryer is in use!

Life for a sacrificial home keeper is difficult enough with what absolutely must be done to keep a home. There are things that must be done daily and goodness knows, there are little enough spoons or energy to do that, let alone lift a heavy appliance and stand or sit to iron clothes.

With sleep a precious but scarce commodity, coupled with tearing sore muscles, we must keep our home making simple. Ironing is simply too taxing on the chronically ill woman to seriously consider as part of a daily routine.

At first, I was particular about how I hung my washing out, in order to leave no creases and so minimise the visual effect of unironed clothes. But over recent years, polymyalgia rheumatica and arthritis vyed with fibromyalgia for first place in pain stakes.

I could no longer lift my arms to peg the washing out, and I was forced to make use of my dryer every time.

By doing just a load of washing a day, it doesn't build up and I find with less clothes in the dryer, that they come out almost wrinkle free. I try to grab them as soon as the drying cycle is over. All they require is a quick shake as I fold them and put them away.

Don't get me wrong! The OCD and perfectionist in me baulks at having to do this, but the practical and pragmatic inner woman says it is OK. It is simply my new normal.

There's plenty of tasks each day vying for first place in sucking on my limited spoons, so when I have a few spoons and I am tempted to drag my iron out of its' box: I don't!

Today's lists are:

• Clean kitchen
• Do a load of washing
• Cook chicken garlic breasts and mashed potato for dinner

Grieve and move on!

When confronted with the diagnosis of a chronic health condition like fibromyalgia, we can often grieve for the stronger, healthier person we were before it and it's like any other form of grief. 

We are angry, we bargain, we accept it, we move on. The hardest part in moving on is linked with acceptance: we have to find our new normal. 

I find there's a period of anger and denial, then acceptance. And it varies with each of us.  

Acceptance is the pathway to moving forward. So it is critical that we come to acceptance by focussing on what we have left, rather than what chronic illness has taken away from us.

As in all grieving, no one can say how long it will take us to come to acceptance, but it must come so that we can find our new normal and live our new life in that new normal.

What chronic illness takes from us is more than the physical. But even so, despite feeling down emotionally, we should and must focus on what it hasn't taken.

I have days where I still mourn the loss of basic abilities like home cleaning, showering and walking far. Today is one of pain with fibromyalgia to the point that I can't straighten my fingers and even my eyes ache.. 

My to do list today is not big, but it. is. what. it. is.

• Clean the kitchen
• Cook dinner
• Shower sometime before bed