We are so grateful!

 

We are so happy to be celebrating our silver anniversary today.

It's been the best 25 years of our life and we are very grateful that the LORD arranged our chance meeting with a very happy ending..

I need him awake and aware

 

I was a bath a day girl all my life. It just was so nice to soak and think of pleasant things as the warm water soaked away the aches and pains of the day. This was great until my knees packed up and I couldn't get out of the bath.

So obviously the next thing to do was to become a shower girl, and that worked for a while until fibromyalgia took over my life and sucked my spoons dry. I simply had no energy after a shower but that wasn't the worst of it.

No, the worst of taking a shower for me has now included panic attacks whilst in the cubicle. I am so unsure of my knees being able to hold me up that I hyperventilate. Not good when you have limited oxygen in the first place thanks to a hole in the heart and asthma.

I have tried all the hacks for taking a shower safely and peacefully: I have a shower seat, I turn the exhaust fan on so that the steam isn't too bad, I do not have the water too hot. But it doesn't really help much. 

Once the adrenaline takes over and my breath is cut short, the angina kicks in and my heart pounds like a sledge hammer. So I try to not have water running over my face as this sets the panic mode off.

I have managed to shampoo my hair with my back and face away from the stream of water and I have a very quick wash routine so to ensure my ordeal has been successful as well as quick.

In the old days, Chris used to help me shower, but alas, with his heart failure and chronic fatigue, he has enough trouble showering himself and I don't want him exerting himself on my account.

I have got a shower down to a reasonable time and I can be in and out in 10 minutes- out as in dry, powdered and in my PJ's. All I have to do is dry and brush my hair.

Because my spoons fail me really quickly, I brush my teeth before the shower and have my ablutions at night. I can just stagger to bed if need be. And sometimes it is needed- a shower in the daytime can knock the wind out of my sails for the entire day at times.

I admit it galls me that all my little pleasures like bathing and showering make me feel like I have run a a marathon, but it is what it is. What was a routine like breathing every day is now planned with precision around Chris's sleeping pattern. I need him awake and aware in case I fall. 

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. 

Part of your tribe

Sadly, I walk the lonely path of mental illness and chronic illness and it can be a lonely path.

However, I have been blessed with a caring and gentle husband who stays beside me and who has my back. It is such a comfort to know that his love isn't conditional on how fast I spin my wheel.

If you have someone like that in your life, consider yourself blessed. In this cold and crazy old world, it's hard to find a good heart.

Thank God for people who support us in our illness or disability- they truly are God given. Cherish them. They are kindred spirits and part of your tribe...

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.