The only positive thing for spoonies

 

I was talking to my daughter this morning. She also has fibromyalgia. She asked me what plans I had for today and I told her I was planning to take a shower.

We laughed at how ridiculous that sounded and then we realised that once again, it's all about spoons and being organised.

Given the nature of fibromyalgia, one can never plan anything until we wake up each day, and then it is entirely dependent on pain and energy issues. 

We can never be spontaneous, but have to weigh up the need or desire to do something against the reality- having enough spoons to see us through the day.

If one thinks there just may be enough spoons to go somewhere or do something, we then go in to planning mode. We may cook dinner in the slow cooker instead of preparing something at the end of the day.

Perhaps we will go to a doctors' appointment and must organise our day with the idea that dinner is taken care of via the slow cooker and the bed will be inviting and will be calling us as soon as we get home.

We become experts at planning our lives as we go, and despite fibro brain fog, we usually can think on our feet as to what would be possible on any given day. Today I am making a slow cooker stew for dinner and saving my spoons for that shower. 

I really hate being ill, and I can't think of any positives about fibromyalgia and other trials we spoonie friends have to endure. But the one (the only) thing I can think of for us is that chronic illness has made us masters of organisation and planning. 

You better go check yours out!

 

So as you know I have been having problems staying awake. Even after 8 hours of sleep, I battle keeping my eyes open during the day.

This has had me perplexed and I have blamed my fibromyalgia, which still may be a part of what I have been struggling with, but certainly not all.

Going through my refrigerator last week, I sorted through the side top shelf on the door where I keep Chris's insulin injections and my thyroxin. Checking the dates, I was shocked to see that my thyroxin was out of date by two months!

I quickly discarded them and put a new week of indate tablets in my pill container for the week. No wonder I have had peeling skin off my face, hair loss and fatigue...

It's been 6 days so far with little change, but I would expect the synthetic thyroid hormone to build up in my system soon... I am hoping I don't have to wait long.

I am so switched on with medications and foods and so on that have a limited shelf life, but this time, it fell through the cracks...

Considering I have been battling a long term fibromyalgia flare for about 10 months... yes nearly 11 months since moving here, I guess I have to cut myself some slack. Nevertheless, when I discovered the out of date meds, I did tell myself  that I am an old sausage! And I am!  You better go check yours out! 

It starts with you

  

Lately, I have realised that one of the reasons for my high blood pressure is probably in the way I stress about not being able to do what I want due to fibromyalgia.

Although I know that I am not to blame for being ill, I sometimes find myself berating myself and feeling cross that I am a lame duck. It really gets to me at times.

Often I succumb to false guilt, the guilt that comes from matters that are not in my control, and it is easy to go to the Pit of Despair. You do not want to go there.

On rare occasions, I burst into tears and it is then that Chris usually comes to my rescue, pointing out that it's not my fault, that whatever needs to be done can wait or he promises that he will do it...

It made me think that sometimes I am my own worst enemy. By self-condemnation, I am making a sad situation worse for myself.

When I realised that it was my thinking that makes me get so down sometimes, I smiled at the irony: usually I am trying to validate my tiredness and pain to "normals"- those who do not live with chronic pain and no spoons. Now the "normals" are validating me.

So today, after cleaning my kitchen and making lunch, I am going to "the beach" again. I am going to relax and only get up again when it is time to cook tea.

I am going to start to speak to myself as I would speak to someone else who was ill and blaming themselves: lovingly and kindly. Which just doesn't come naturally to me. I have patience with everyone except myself.

Taking the pressure down

 

There's no nicer time of the day than the evening. All the angst of fighting pain and battling fatigue with fibromyalgia, diabetes, angina and spinal problems is over for the moment...

Whatever the worry of checking and medicating sugars and blood pressure is has been and gone..it is what it is.

As the sun goes down and the moon rises, there is the hope of a restful sleep and whatever chores were meant to be done are either completed or waiting for tomorrow.

We can rest and wind down, enjoying whatever simple pleasures we have left after the raviges of pain and illness. Whatever helps us unwind and take the pressure down is welcome and wanted..

The drapes are closed, the fire lit, the kettle has recently boiled and a tea tray awaits our attention..a final sip of our favourite beverage accompanied by quiet reflection and conversation.

One knows that the morning will bring its own anxieties that life struggling with chronic illness brings, but for the moment the hope of a restful night's sleep resides in our bosom... hope is what keeps us going.

As we lay at last in our bed awaiting sleep, we can reflect on those things that light the wick in our candle of hope. Those things that have given us comfort and peace throughout the preceding day..they are worth remembering...

Being thankful for the good things in our day helps us get a better sleep and is a way of taking the pressure down...

It changes you, man!

 

So I have been feeling a little on edge lately. My fibromyalgia flare has returned with a vengeance. I haven't been sleeping well.

With an ongoing feeling of malaise, body aches and a constant headache, I find I cannot abide much noise. The TV up too loud leaves me clenching my jaw. Even the constant click of my rusty torn kneecaps as I get up and walk somewhere drives me insane. 

I want to lock myself away in a silent world. Not forever, just for a while until the flare passes. If ever. You get to feel like this is how the rest of your life is going to be and it aint pretty.

For the moment, I am being selective about what I listen to... too many decibels are actually painful to me at this time of the Mother of all Flares. Likewise, too much light hurts my eyes and makes my headache worse. 

It's something you wouldn't expect to have happen unless you have fibromyalgia. Nausea, light, cold, heat, pressure on skin, itching all over, hives, dry eyes, crusty nose and dry lips all vie with the noise to  reach a climax of sensory overdrive that gets unbearable. 

So, the answer to the picture here is yes, I have and I would make that annoying toy take its' last squeak. It is something I can control. And goodness knows, there's not much a Fibromite can control these days of flares.

I will hunt and pursue the droning fridge, the dripping tap, the ticking clock, the loud TV and even the squeaking toy on days of Flaring. They will cease and desist. Even if I have to shoot them sky high. Because some days, squeaks and drips are intolerable. I hunt them to survive, and I feel ruthless, for it changes you, man! 

Resistance is futile

Fibromyalgia is a really difficult illness/syndrome to live with. It's the most painful and yet invisible of illnesses. It is difficult to diagnose and there's no specific test for it.

It's infuriating that you can go years without a diagnosis. Especially frustrating when doctors dismiss you. Even worse if they suggest it's all in your head, when everywhere hurts so much you could cry. And do.

My diagnosis after many years of suffering and tests was clinched when my skin came up in red welts after the rheumatologist pressed on my trigger points. I have since learned that it's called dermagraphica or skin writing. 

One can never leave fibromyalgia or move away from it. One is never really out of a fibromyalgia flare as the smallest over extending of energy drags you back into another one.

Fibromyalgia brings emotional pain too as one tries to avoid looking ill but fails as the pain overrides the best of our intensive acting like a "normal"

There's no cure  and one really doesn't move on but moves through it flare by flare, day in day out, year by year.  One staggers through it. Lives it 24/7.  Endures it. 

No matter how hard we try to live a normal life, fibromyalgia accompanies us like a cloak of gloom around our shoulders. We soon learn we must accept it, for resistance is futile....

Plans for today: Today I had the lady come to clean our house and tomorrow we have a house inspection. My plans today are to keep the dishes under control and put away a few clothes from the washing today. Dinner will be pea and ham soup cooked in the slow cooker. 

Flaring badly, I see a nana nap on my horizon...

It's going to be a PJ's day

 

The rain is pouring down.  Xena is still asleep on my bed.  Chris is watching TV and I have got the breakfast dishes  in the dishwasher. 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 Kingfishers 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 onto the decking 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.

I'll just leave this here

 

Most nights I don't remember my dreams unless they are nightmares. But last night I dreamt that the Rapture was imminent and I was approaching strangers, asking them if they knew Jesus as their Saviour.

It wasn't scary by any means, but I felt all the angst, as I desperately tried to present the Good News of salvation to people. The urgency was intense.

I woke up hyperventilating and took a trip to the bathroom. When I returned to bed, I was sure that I wouldn't dream about it again. But I did. 

The second time was more urgent than the first time, and I was rapidly presenting the path of salvation to someone and was desperate that they be saved.

When I woke from the second dream, I prayed and asked the LORD what did all this mean and if it meant something that I needed to do, then let me know and I would do it.

It was no mistake that I got a link to a You Tube vlog of  the imminence of the Rapture and all the prophecies that are being fulfilled daily now. Time is short.

I had my answer- and so, to whoever is sitting on the fence, get saved now.  You do not want to spend eternity in hell and Jesus is the only way of salvation.

Because of the intensity and realism of the dream, I feel compelled to reach out and talk to you. You need to be saved because there isn't much time. Jesus is coming back for His church- the believers.

The world is going to be in a horrible state after this and you do not want to be left behind. God loves you- all of you who are still on the fence. I don't know you, but He does. He wants you to trust Him.

Whoever is sitting thinking about the future, know that the future is Hell if you are unsaved, but eternal life and joy in Christ for those who are saved-and you need to make a decision to trust Him and get saved now. The Age of Grace is nearly over.

Jesus knows who you are and you know where you stand in this matter. I have heeded my dream and done as I must.  I'll just leave this here.

© Glenys Robyn Hicks

Jesus said unto her, I am the resurrection, and the life: he that believeth in me, though he were dead, yet shall he live:  John 1:25

Welcome! Come in and lie down!

                                                    

So yesterday we  had plans to visit my son and my twin sister who share a house together..I had been looking forward to it for a while.

When it was time to rise, I didn't feel well enough to go and it was only because I had to deliver some medications that I made the effort to leave the house. My fibromyalgia and polymyalgia were both flaring and my body was missing the Prednisolone...

On our way there, I kept falling asleep, only waking up when the seatbelt garrotted me... I felt weak and disoriented.

By the time we arrived after a 40 minute drive, I couldn't focus and after ordering McDonalds online for lunch, I fell asleep at my sister's computer.

We ate lunch and I still felt like my head was full of cotton wool and my muscles especially in the neck and shoulders were so sore I nearly cried.

My twin and son who has chronic pain issues from a work injury and fibromyalgia, told me to go and lie down in her bed. My sister joined me and my son went to his room, leaving Chris to watch TV and/or sleep.

I don't know how long I was asleep, but Chris came in and asked to go as he was feeling unwell with his high sugars and wanted to go while it was still daylight.

We quietly let ourselves out and took the scenic easy route home...and I slept on and off throughout the journey...

Next week my twin and I will be 70 and they are planning to come to our place. Although I am looking forward to seeing them, I know it will be a shortlived visit.  

Chronic illness in the form of fibromyalgia, polymyalgia and lupus for her, dictate our lives somewhat... in spite of the best intentions, spoons dictate rigidly and always win.

We will eat, they will leave to go home to sleep. It looks very like I will be saying, "Welcome! Come in and lie down!" 

    

             

I find that very relaxing

 

If ever a picture epitomises you and your home and lifestyle, it's this one. A lady dressed sensibly and warmly with knitted socks looks out of the window watching the birds feed from the bird feeder. 

Her cats also watch, but with ulterior motives, mentally stalking them as prey. She has a cuppa in her hand and seems wholely relaxed.

Like our home, she has a blanket over her armchair, protecting it from the cats and adding a homely touch.

I would love to visit her home as I feel like we would be kindred spirits...

Anyway, today is the first day off the Prednisolone. I tried to halve the tablets but they crumbled. So I will be going off them cold turkey. I was only on them for four days...

My polymyalgia is improving but I still have a headache. I have just taken some paracetamol for that.

The Roombas have been run, I have pulled my bed up, done breakfast, bloods and meds and a load of washing which is now in the dryer. The weather is lovely today and I really should have hung it outside. But the PMR and fibromyalgia says otherwise, so I will have to listen to my body and just go with the flow.

I have a couple of pork chops on the kitchen bench thawing for tea tonight. I will serve mashed potatoes and a salad with them.

I am going to take the rest of the day easy as I have to pace myself.. fibro is raising its ugly head again.

Meanwhile, I will sit on the couch and let the fresh air fan me as I lay in the sunshine on my couch for a bit.

From my view on the couch, I can watch the clouds and I find that very relaxing...