Lovely stuff

As a long time member of the Fibromyalgia Club, I usually wake feeling unrefreshed and aching all over. I have never been hit by a bus or train, but I would imagine that early morning stiff feeling would be akin to it.

Almost in a trance, I find my way to my kettle and turn it on. I grab the milk out of the fridge and proceed to take my blood to determine how much sugar I have in my diabetic old body. Like my weight, there is always too much of it.

Whilst the bread is toasting, I check my diary to see if there's anything we have to attend to or go to. With fibro fog my second nature now, I write everything down so that I don't forget it. In spite of aches and no spoons, if I don't have to leave the house today, I may do a little soft shoe shuffle. No wait- not a shoe shuffle- a slipper shuffle.

Really, it's sad when you come to think of it. A day with no appointments or shopping makes my day. I don't even care that the bins go out more than I do. 

Pyjama days are splendid days and I look forward to any excuse during a fibro flare to allow me to lounge around in my nightie and dressing gown. On days like that, it is enough that I brush my teeth and wash my hands. Forget the trauma of taking a shower. That's a good day job!

With high blood readings lately, I have had to be strict with limiting sugars, but because I hate my tea with none or worse still, with artificial sweeteners, I only allow myself one treat: a cup of white tea, one teaspoon of sugar. Stirred not shaken.

My first cup of tea in the morning is the one I enjoy the most, and I find I can limit tea sweetening during the day. Give me the joy of a refreshing, uplifting *sweetened* cuppa in the morning and I will be a reasonably happy little diabetic warrior the rest of the day.

Most people need a coffee in the morning, but for me, it's tea all the way. I can't live a happy life without my morning cup of tea with milk and one: it truly is lovely stuff.

 

The only nice thing about it

So we went to the doctor yesterday to get our results from blood tests taken a few days ago. My blood pressure was 140/90 which was slightly better than last time, but still high.

He asked was anything bothering me and I had to tell him I am worried about Chris. Both of us have heart failure, high blood pressure, diabetes and cellulitis plus I have fibromyalgia. 

We both have pitting oedema on our feet and legs and the fatigue that comes from obesity and feeling sick. Dressing and showering is shared in that we help each other and because of exhaustion from showering, we shower every second day, taking opposite days. That way, we can help each other.

Our love language is touch in the form of massaging each other's feet and legs and our speech revolves around spoons and how much sugar is in everything that passes our lips.

We rarely leave home any more except for the doctor or chemist and our rubbish bins go out more than us. The highlight of our day is to discover we don't have any appointments or need a blood test. We are extremely relieved to know we can just stay home and have a PJ day.

It is unusual to call on us and not find at least one of us having a nana nap, particularly if we haven't slept well the night before.

When massaging Chris's feet or watching him sleep upright so that he doesn't feel like he's drowning in his fluid, I become anxious about how ill he looks and I fret that I will lose him.

I can't bear to think of that and when I do, I have to give it to the LORD in prayer and trust that He will grant us more time together.

All this angst does nothing to alleviate my fibromyalgia pain or help me get over a flare and I find myself taking mild pain relief every 6 hours. As the doctor advised.

Our home is able to be company ready in half an hour as it is basically tidy all the time. True, there may be slippers in the lounge or a cup on the table, but this can easily be fixed. I just close our bedroom doors to hide the permanently clean but unmade beds.

We love our home as we feel it nurtures us and even though we only may be gone a few hours when we have to go out, we find we are really looking forward to coming home again.

When we were engaged, we agreed that it would be nice to grow old together and we have. Twenty-five years later, it isn't so nice. But thank goodness we have each other and that's the only nice thing about it.

We both are spoilt girls

With heart failure and certain blood pressure tablets, my feet and legs puff up with fluid. I have pitting oedema which means that the indent when a finger is pressed on the limb, stays for a long time. My heart is not working as it should.

At the end of the day, when we watch TV together, Chris will automatically reach for my feet and gently massage them, rubbing the fluid upward towards the heart. He also rubs my toes which burn and sting with neuropathy from diabetes.

The other night as Chris rubbed my foot, Xena jumped up onto the couch and lay beside me. Not wanting to miss out on cuddles, she put her paw up on Chris's arm, purring loudly. It was a lovely relaxing time and helped lift our depression. 

Neither Chris or I are doing too well physically at the moment. Chris's sugars are uncontrolled and he has fluid on his lungs from heart failure.

Such is the loving nature of this man that he rubs my feet continually, even when he needs his own done. I do rub his feet and legs at least once a day and when I cut his toe nails for him. But it must be said that his ministrations to me are more frequent than mine to him. I simply have no spoons at the end of the day. 

I manage the house with all that entails and Chris knows that my spoons are in short supply, especially with a fibromyalgia flare, and so he seeks to bring me some comfort and pleasure at the end of the day.

Xena seems to pick up on the loving atmosphere and always makes sure she's between us in order to be included in the cuddles. 

She loves her Daddy too and we consider her as our feline child-and because she loves her Mummy as well, she purrs contentedly as she wonders which one of us is a spoilt girl. We both are spoilt girls.

This too will pass

 

It's been nearly a week without spoons. I have absolutely no energy to speak of and have just been focussing on keeping the clothes washed, kitchen clean and cooking.

I suppose it's my fault. With some recent spoons, I probably overdid it and hence the Flare of Flares. It's sort of predictable with fibromyalgia. But I was hoping to break out of the pain/fatigue cycle. I haven't.

 

The doctor has become concerned about my blood pressure being high 160/90 and has been trying to get me to give myself a once a week injection of a drug that's supposed to help me lose weight as well as keep the sugars low. I don't want it.

My feelings are that once you inject something, you have to put up with any side-effects for another week, unlike oral tablets that you have some control over. You can stop taking them: not so with injections. Yes, you can stop using them but the chemical is in your system for a week.

I am sick enough with the antibiotics I am taking for suspected cellulitis in my leg. They are very rugged and have given me thrush as well. But I need to finish the course to heal my leg.

So because I have an infection, I am listening to my body and taking a nana nap if I need it. And I don't feel guilty for napping.

I am trying to keep upbeat and not stress too much. It's hard for me as Chris is suffering with his heart failure as well.

I know better days must come and that's why I chose the picture above. With prayer and leaning on the LORD, this phrase often comes to mind:  "this too will pass" and it will- eventually. 

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 handmaiden, aka 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! 

The downside of country life

So  the other night I was going into my bathroom when I noticed this huntsman on the frame near the door. My heart nearly stopped!

Walking into the bathroom, I must have passed close to this horrid spider who could easily have jumped on my head and such is my fear of spiders, it possibly would have killed me in a cardiac event brought on by fear!

Not an overly big spider by huntsman standards, he would have been about 3 inches across. But he was big enough to induce panic in us as we scurried to find a broom and the fly spray!

I didn't want to lose this guy as we wouldn't know where we would find him, so there was a great over use of flyspray and frantic loud bangs of the broom. Suffice it to say, he got a burial at sea!

It is said that they come in pairs, so we were watching everywhere until his mate was found. And she was...

I was in the adjacent laundry and found her sunning herself on the glass panel in the back door. I grabbed my flyspray and went to spray it, but then realised that she was outside the door. She too had to be gone because I didn't want her coming in the house. I'd had enough excitement with her mate's intrusion.

A few sprays of the flyspray had her on the move, and a few heavy thumps of the broom, and she was no longer. Except for food for the birds and ants. 

Indeed, I had to chuckle at how fast I moved, considering my two damaged knees and fibromyalgia. It's marvellous what an adrenaline rush can do for a body! 

Not only did the fear of losing the huntsman to perchance come back to terrorise me, rattle me, but so did realising that I had married a man who refused to rescue me from dangerous wildlife! Such was my expectation of my knight in shining armour! :)

Don't get me wrong: I still love living here in the Australian bush with my liver-lilied Chris,  but snakes and huntsmen are definitely the downside of country life.

Sex isn't everything.

This picture reminds me of Chris and I in the kitchen... I often can be washing the dishes and he will come behind me for a cuddle.. I still blush and giggle like a school girl!  I usually go weak at the knees when he kisses the back of my neck, and I turn around and kiss him passionately.  Finally, we break away, breathless with romance and laughter!  Most times, he then pitches in and helps me finish washing up.

This little dalliance of ours to us is quite romantic and that coupled with the fact that Chris helps me with the dishes, makes me feel nurtured and happy- it doesn't take a lot for me! Which is good, because money is short for a lot of flowers and chocolates.

We do go out together for meals whenever we can salt away a little money.  Nothing too expensive, but we bring our own ambiance!  Just looking into each others' eyes and holding hands over the table reminds us of our early days together and keeps us focused on each other.  Truly, we do adore each other.

Because money is in short supply, and because we constantly laugh together and cuddle often, we feel that special occasions such as Christmas, birthdays and Valentines' Day aren't necessary to show affection and love. We in fact, do not buy gifts for these for each other. And it is perfectly fine with us. We do, however look at our wedding photos and reminisce a lot on our anniversary or any other date significant to us...

I think it may be the fact that we are an older married couple that makes it easier to see romance in ways that younger couples don't.  With age and fibromyalgia and heart and back problems and Chris with his diabetes, sex is either umcomfortable or impossible. So both Chris and I look forward to a bubble bath at home with a good back wash and nail trims or a foot or back massage.  We do that for each other on a regular basis. To us, nurture is romance!

Chris loves me bringing his breakfast into him in the morning. This to him is romantic and although his not buying me presents and sending me cards may seem that he is an unromantic man, nothing could be further from the truth.  He sings to me! We have some special songs that he says were written just for us, and he will play them on the computer, and take me in his arms and croon to me as we dance slowly round the living room.

Because I am often in hospital, Chris shows his care by staying with me most of the day until visiting hours are over, just stroking my hair and holding my hand. Or he will come with our laptop and headphones for me. My heart melts with love for him.  We can't stand to be away from each other.

Illness, medications, no spoons and age have curtailed our times of intimacy, but we manage to show love to each other in ways that are imaginative, erotic and very caring.  There is absolutely no thoughts of unmet needs- love can be expressed in ways other than full sexual intercourse, and we delight in each other regardless! If sex happens, it's a bonus!

So we don't care about no presents or cards for Christmas, or birthdays or Valentines' Day-  with the romantic sparks that still fly between us, and our little dalliances, every day is Valentines' Day. 

I thank God for Chris as I am one very blessed wife, and I tell him often.... he finds that very romantic too! We are proof that you can live without sex! Sex isn't everything! (This post has been written with my husbands' permission)

You just don't know when it will break.

 

Over the last week I have been enjoying a respite from fibromyalgia pain and fatigue. I don't know why it happened, but of course I am glad it did.

During that time I have been busy cooking meals in advance for the next time I have the inevitable flare. It has been working out really well.

I have been carefully pacing myself, allowing 15 minutes of decluttering then resting. Emotionally, it's very satisfying.

Well, I woke up this Sunday morning and have had an unwelcome guest: you guessed it: another fibromyalgia flare. So I guess that I overdid it..So today I will be reaping the benefits of preparing some meals in advance. 

Conversely, though suffering physically, I am not depressed by this: I knew my respite wouldn't last forever. But oh how wonderful it was to have some spoons and to be able to go a whole day without a nana nap!

We Fibromites in regards to spoons and flares, are definitely babies in cradles swinging from the tree tops. We know that at any time the bough can break and we will come tumbling down. 

But it's best if we just learn to go with the flow and try to enjoy the respite: the bough might not break for ages, but you never do know.

Making the most of my spoons

So for the last few days I have been enjoying a respite from fibromyalgia pain. The weather has been lovely and sunny and the warmth has permeated my being and soothed a lot of muscle pain.

I have been decluttering our home and making extra meals to freeze for later on. It has been a novelty and a joy to have spoons to do it.

Aware that it can bring on a flare if I do too much, I have been pacing myself. I do 15 minutes sessions of decluttering with a rest in between. With cooking, I do about half an hour of food prep then take a rest as well.

I am enjoying my new dishwasher too. It certainly makes keeping up with the dishes and keeping my kitchen tidier easier. And that I find, encourages me to cook.

I really don't know how long this respite will last, but I'm grateful each day that I have absence from pain and fatigue.

Until you have a respite, you don't realise how challenging your life is. So for the moment, however brief it may be, I will be making the most of my spoons.

 

Being saved is crucial if you want to live.

For those of us who regularly read the Bible, it is very apparent that even though we read of a powerful God Who chastises and punishes the wicked, we also see a kind, patient, lovingly holy God Who is full of mercy. 

The fact that God is merciful and holy is woven throughout scripture, both in the Old and the New testaments, and those who only see a harsh, punitive God have not truly read the Bible with an open heart and mind. 

Mercy, grace, justice, love, honour, fairness and compassion are hallmarks of our God Who loved us all enough to send His only Son to die for us when we were still sinners and unloving and unkind. 

The very Laws laid down in the 10 Commandments and then in Leviticus reveal a God Who knows what is best for His creation, and Who longs to teach His Children so that they will not only thrive but be holy. 

When we study the Word, a beautiful picture of our God is shown us through the Word and through His Son Jesus. He embodies the qualities of the Holy Spirit, Who Himself is the third Person of the Godhead. Here is an example of the mercy of God.

Do not let the son of the foreigner who has joined himself to the Lord speak, saying, “The Lord has utterly separated me from His people”; nor let the eunuch say, “Here I am, a dry tree.” For thus says the Lord: “To the eunuchs who keep My Sabbaths,and choose what pleases Me, and hold fast My covenant, even to them I will give in My house and within My walls a place and a name better than that of sons and daughters; I will give [a]them an everlasting name that shall not be cut off". Isaiah 56:3-5

Love, joy, peace, patience, kindness, goodness, self-control and mercy are all qualities of the goodness of our God. He is in fact the totality of holiness. 

It is because of God's Holiness, in that He is the essence and being of the above qualities is why He sent His Son to become sin in our place for He cannot abide with evil. Therefore, it is impossible to come into the Presence of God except through Jesus Christ. We must be born again or saved or we will not go to heaven.

We all know the world is getting darker and soon Jesus is coming in the clouds to take His Church- believers. If you are not saved, you will be left behind to face a great tribulation such as the world has never seen before. Salvation is still possible because God is merciful but man is not. Your salvation will come at a great price: you will lose your life.

If you are not saved, know that the Holy Spirit is wooing you and longing for you to accept Jesus. Today is the day of salvation: the Holy Spirit says, "Come!"

© Glenys Robyn Hicks

For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation. Romans 10:10